Bharathi, 57 years old, has a degree in psychology and is a social worker who volunteers some time with dementia patients. When her 83 year old aunt started behaving strangely, she realized that the symptoms could be dementia, and gave the family brochures and literature on dementia. This led to a proper diagnosis and the family was able to learn how to help the aunt, who is now much better and happier. In this interview, Bharathi shares her story.[note]
Dementia Care Notes: Please share the salient events prior to the diagnosis.
Bharathi: My aunt and her family used to live in Vizag before they moved to Bangalore. My aunt is 83 years old. Her husband (my uncle) is 90 and very active and articulate (he writes stories). They live with their eldest daughter (60 years old) and her husband, who is 75 years old. Another daughter is in the USA.
Around eight years ago, Aunty lost her son, and this was a very big shock to her. She also started becoming forgetful, for example she would forget to switch off the gas. She put on weight. All this was diagnosed as a thyroid problem, and doctors said that the problem had probably been there for a long time. However, her forgetfulness continued even after treatment.
After coming to Bangalore, Aunty seemed worse. She fell down twice on her way to the bathroom one day. She was unable to get up the second time and became bedridden after that. Doctors who checked her said it was “old age” and that she might have suffered from a stroke or something like that.
Aunty deteriorated rapidly after that. Though she talked about old times, she sounded confused and was often unable to express her needs. She ripped off her diapers and soiled herself often. When her husband tried to clean her, she would get agitated. She also developed bedsores.
Aunty often shouted in those days, for example, shouting at Uncle because he was watching TV. She could not sleep at night and remained in an agitated state. Her voice also sounded different and more commanding, which alarmed and worried the family.
Another thing: Aunty could no longer tell what she was eating or drinking. For example, she could not make out whether she was having tea or coffee, and even immediately after a meal, she could not say what she had eaten.
The family was puzzled and worried by all this, and did not know what could have gone wrong. They felt she had totally changed, and suspected a mental problem.
I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia.
As my volunteer work included dementia patients, I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia. When they read what I had given, they also felt that this could be dementia, and decided to consult doctors to get a diagnosis.
Dementia Care Notes: Your aunt was placed under observation after the diagnosis, right?
Bharathi: By the time Aunty was diagnosed, the family was quite overwhelmed by the situation. They knew they would have to adjust many things to fit this diagnosis. Aunty had bedsores, she often shouted, she would not lie straight, and it was very difficult to clean and bathe her. They decided to place her under observation for a month at a specialized ageing and dementia centre where experts could observe her and help her improve while the family made the required adjustments.
Aunty’s younger daughter, based in the USA, was familiar with dementia. She came back to India to help. While Aunty was under observation, the family started understanding more about dementia. They learnt how they could communicate with Aunty and help her.
Uncle felt very lonely at home without Aunty when she was under observation. He felt he had no one left at home with whom he could share things. After so many years of living together, he was used to talking to her and he missed her a lot. But the family needed this time to adjust to this new phase.
Dementia Care Notes: How did the observation phase change your aunt?
Bharathi: Aunty had improved a lot when she returned home after the one month under observation.
One very important part was that she had stopped shouting. This had been a major problem earlier.
Another thing was that she was no longer ripping off her diaper, which made it much easier for the family to ensure that she remained clean and hygienic.
Her bedsores had also healed, and she was able to lie straight in bed.
Aunty also seemed much more cheerful and talkative, and was no longer agitated.
… when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month.
One thing, though. At the end of the one month stay, when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month. She has told us that she wants to stay at home with all of us around her. I think one reason she is more open to talk and listen is that she doesn’t want to be sent to a hospital. The very sound of an ambulance frightens her.
Dementia Care Notes: How is care given at home now?
Bharathi: The family, having understood that she has dementia, is now fully set up to help her.
For example, they now have a hospital bed for her, so that she can be made to sit up for meals and can also be lowered easily. They have put an air bed to prevent bedsores. They also have a nurse who comes during the day to bathe and clean Aunty and help in other chores.
In addition to this, the family has made a lot of effort to understand what Aunty is going through. They have adjusted their way of talking to her to take her dementia into account, and they have also learned how to help her. The daughter from USA is also working hard to see if she can help her mother improve.
One thing to remember here is that everyone in this house is a senior citizen. Aunty is 83, and her husband is 90. Her eldest daughter is herself 60 and caring for a bed-ridden patient is tiring for her. The eldest daughter’s husband is 75, and needs physiotherapy because of back problems. In spite of this, everyone is managing to take good care of Aunty now that they understand the problem.
Dementia Care Notes: How is your aunt doing now?
Bharathi: Aunty is doing really well now. She talks a lot about old times. Sometimes, she sings old songs. She also forgets a lot, but she admits that she is forgetting things, and sometimes asks when she will get better. She no longer gets angry or agitated, and is therefore easier to take care of.
Aunty loves to have her family around.
She still has problems in the way she understands the people around her. For example, she calls her daughters “akka” as if they are her sisters. She calls her husband “father”, but when she is asking us where he is, she will say, “Where is your uncle?” She is also not able to recognize the photograph of the son who died eight years ago.
But though she mixes up relationships sometimes, she knows we are all family.
But though she mixes up relationships sometimes, she knows we are all family. She recognizes us when prompted, and sometimes even otherwise. She particularly enjoys seeing her grandchildren. When people visit, she acts like a hostess and tells her family members to give them something to eat.
Aunty wants to get better. Currently, she is unable to wear specs and is lying down most of the time, but maybe, if she improves, we will be able to make her wear her spectacles and she will be able to see people and things better, and even read again. We are hoping this will be possible.
Another thing we are trying is to ensure that she does not have to cope with too many changes around her. It is possible that the move to Bangalore was a setback for her because of so many changes.
Overall, Aunty seems quite happy and positive, and the family members understand what she is going through and have changed their way of doing things so that she is comfortable and happy.
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Rukmini (name changed) is the granddaughter of a dementia patient who passed away in an old-age home a few years ago. Rukmini’s mother and aunt, caregivers of the patient, never acknowledged the diagnosis of dementia, and did not take it into account while caregiving. Even now, years after the patient’s death, Rukmini’s mother does not understand that the patient’s strange behavior was caused by confusion and frustration; she is convinced that the patient was being uncooperative and inconsiderate.[note]
Over to Rukmini:
I have read “Caregiver Voices” on this website and also seen stories on other websites. Many stories describe how family members changed their lifestyle, left jobs, and moved from one city to another to look after a loved one. Their main concern seemed to be caring for the patient and they tried their best to make the patient’s life comfortable while also balancing their own lives. My own story is very different, because my mother and aunt are in denial about dementia and related caregiving even years after my grandmother’s death.
Background:
Mom and Auntie (Mom’s sister) live in a small town and Nanima (Mom’s mother) used to alternate between Mom and Auntie. When Nanima was in her seventies, she suffered a series of strokes, and began behaving in a very odd way after that. The doctor told Mom and Auntie that Nanima had developed dementia and would get worse over the years.
Mom did not share the diagnosis with my sister or with me.
Mom felt Nanima’s behavior was hurtful and embarrassing. To add to the problems, Auntie claimed that Mom was not giving proper care to Nanima.
Nanima was living with Mom at the time of the strokes, and, according to Mom, she was acting “stubborn” very often. Mom felt Nanima’s behavior was hurtful and embarrassing. To add to the problems, Auntie claimed that Mom was not giving proper care to Nanima. All this stressed Mom a lot, and every time my sister or I talked to her, she complained about Nanima and Auntie.
I lived in a city which was a day’s journey away from Mom, with my in-laws in a joint family system. My father-in-law had cancer, and my mother-in-law was arthritic and a diabetic and hypertension patient, almost bed-ridden because of her problems. I had left my job to take care of my in-laws and to handle the work of our joint family. Already overwhelmed with various illnesses and responsibilities, my only way of supporting Mom was listening to her and consoling her over phone every week.
My sister lives in the USA; she is unmarried and has a comfortable job. When she realised how stressed Mom was, she invited Mom for a holiday. To Mom, it sounded an attractive way out of her current stressful life, so Mom told Auntie, “Okay, you always keep telling me how I should take care of her, why don’t you handle her for a few months, I am off to the USA to visit my younger daughter.”
Auntie promptly agreed, saying, “Yes, I’ll look after her, and you’ll see, I will take better care than you did, and she will improve”. Nanima and her full-time attendant were moved to Auntie’s home.
For the first few weeks, Auntie was very enthusiastic about the “progress” Nanima was making and kept telling Mom how happy Nanima was. But then, Auntie’s enthusiasm of looking after her mother vanished. Soon afterwards started the complaints, such as “”she is so difficult”, “the nurse has to be fed”, “she is so heavy, one person cannot lift her”, etc. Once, when very upset, she even said, “Why can’t she just die?”
Around that time, Auntie’s daughter (also in the USA) became pregnant and she asked Auntie to come over to help her through the pregnancy and the subsequent babycare.
Without consulting with Mom, or asking her to return to India, Auntie fixed up an old age home for Nanima. She then called Mom and told her. Mom didn’t offer to rush back, and Auntie placed Nanima in the home and went off to her daughter in the USA. Some distant relatives who stayed in their city agreed to check up on Nanima at the old age home every month to send the “she is okay” updates to Mom and Auntie.
Nanima died a year later in that old age home.
The word ‘dementia’ was never mentioned by either Mom or Auntie. Based on what I’ve heard, I conclude that the Mom and Auntie did not connect Nanima’s dementia problem with her odd behavior.
I was not present during the caregiving, but I was in touch with Mom over phone very frequently. I would call home every week.
Mom would tell me and my sister that Nanima was being troublesome and stubborn. Auntie would visit Mom every week, and each such visit was ending in some sort of unpleasantness, because Nanima complained to Auntie about Mom; Mom termed this as “playing politics” to cause a rift between Mom and Auntie. Often, these complaints were about food, such as not being given her meals on time, or getting stale food or the amount of food not being enough. Auntie would question Mom about these and Mom would either flare up or start crying; the whole thing sounded like a family drama of a soap-opera style.
Neither my sister nor I suspected that Nanima has been diagnosed with a medical condition that explained her behavior.
It always sounded like Nanima was perfectly fine physically but deliberately acting in inconsiderate ways.
Mom would also say Nanima was getting lazy and not taking her bath properly. She would say Nanima was inconsiderate and would go off for her walk without telling anyone. It always sounded like Nanima was perfectly fine physically but deliberately acting in inconsiderate ways. Auntie, on the other hand, believed every “complaint” of Nanima and constantly blamed Mom for not caring “properly.”
When I think back of those days, I feel quite sure that neither Mom nor Auntie tried to understand what “dementia” was and how it impacted Nanima, let alone try to see how to help Nanima.
My own exposure to Nanima was very short, and I did not guess anything either.
I would visit Mom once a year in a really packed-tight three-day trip, which was all I could manage. To host me and my husband and kids, Mom would move Nanima off to Auntie’s place for those three days, and the time I spent there would vanish in a whirlwind of visits to all relatives and friends. I would visit Auntie, too, and would find Nanima sleeping in front of the TV or in her room. I barely got to exchange a couple of sentences once in a while, and she seemed disoriented. Friends and family talked of her as a troublesome old woman.
I learned of the diagnosis a few years after Nanima’s death.
After my in-laws passed away, I was able to meet my cousins and attend family functions. Nanima had died a few years ago. On one family function, Auntie’s eldest son mentioned then that his father-in-law had dementia, and added, “like Nanima.” That was the first time I heard of the diagnosis.
Nanima had slowly gone blind because of her cataracts, but being a dementia patient, she probably did not realise what was happening
Another very shocking thing I learnt then was that Nanima had been blind. Apparently, Nanima had slowly gone blind because of her cataracts, but being a dementia patient, she probably did not realise what was happening and did not know how to tell anyone about it.
Nanima’s blindness was discovered after her dementia had advanced and she was in the old age home. Mom and Auntie were both away in the USA. Nanima’s behavior made it obvious that it would be very tricky getting her operated and making sure she followed the post-operative precautions and care. No friend or relative was willing to even consider whether Nanima could be operated and given back her vision.
The denial about dementia continues even now.
Even years after Nanima’s death, Mom doesn’t accept that she was a dementia patient. When Mom talks of those caregiving years, she only keeps narrating the difficulties she faced looking after Nanima; there is never a sentence to say that Nanima also suffered.
Auntie, too, is still overwhelmed by her own experience and has not thought that Nanima faced difficulties. Once I told Auntie that it must have been horrible for Nanima to spend the last year of her life blind and in an old age home surrounded by strangers. Auntie only shrugged and resumed describing how difficult it was for her to handle Nanima.
It is obvious that, in spite of the doctor having diagnosed dementia, my mother and aunt did not relate Nanima’s behavior to her dementia diagnosis right till the end. Given that they did not think Nanima was facing genuine problems, their way of caring was obviously full of resentment and anger, and must only have confused and upset Nanima more. It seems such a tragic waste.
In a candid moment once Auntie said, “I never expected her to live so long. I thought she was unwell, so she would die soon. I thought, her ticket had been bought, only the reservation needs to be made.” Meaning, Nanima’s death was imminent, only the actual date was not yet known.
After I heard about the diagnosis and read up on it, I asked Mom whether Nanima had been forgetful. I was told, “Your Nanima was only pretending to forget things. She could remember so many things of her childhood, how could she claim to forget what happened just a few days ago?”
From what I’d read, I had learnt that forgetting in dementia often followed this type of pattern. I told Mom this and showed her an article but Mom refused to believe me and would not read the article.
Mom and Auntie seem to have forgotten the disagreements and upmanship they had over caregiving.
I remember one specific issue that had been a cause of conflict between Mom and Auntie. Mom used to give Nanima toast and butter for breakfast, because that was “normal” at home. Auntie had always been critical of this “laziness” because, to her, breakfast should have been stuffed paranthas. On a few occasions, Nanima apparently said she had not been given any breakfast, and Auntie believed it. When Auntie took over Nanima’s care, for the first few days, Nanima seemed to enjoy the change and Auntie was quick to point out this to Mom (in what Mom called a “gloating” way). But a week later, Nanima was refusing paranthas and had to be switched back to toast.
Within a few weeks of Auntie’s takeover, Auntie began complaining about Nanima, and the complaints were similar to what Mom’s complaints had been.
It is as if they have united because of their common guilt, and they are both busy convincing themselves and others that they had no option but to move Nanima to an old age home
Strangely, Mom and Auntie no longer have any differences about the quality of care they gave. It is as if they have united because of their common guilt, and they are both busy convincing themselves and others that they had no option but to move Nanima to an old age home.
Nanima’s behavior gets worse with every retelling.
The stories about Nanima’s “bad” behavior grow bigger every time they are told, as if Mom and Auntie are trying to convince everyone that it was really unbearable. Perhaps this denial is their way of coping with guilt.
Part of the problem is because our family has always claimed to have solid “values”; everyone is highly educated, in good positions in their jobs, well-respected in their social circles, and many elders are known for their spiritual and philanthropic works. In a family of this profile, one expects that everyone will rally together to do what is right. Mom and Auntie have both taught in colleges, and were known for their strictness. I have often heard them lecture others on how elders must be respected and how the new generation did not take good care of their parents and in-laws. I guess it is embarrassing for them that they placed their mother in an old age home. Perhaps their emphasis on how difficult Nanima was, is their defense against unsaid accusations.
But what I do not understand even now is why Mom and Auntie ignored the medical diagnosis and even hid it from us. They did not try to understand the reality and adjust their care to it.
Nanima was a remarkable woman, and her final years seem so tragic.
Nanima was a truly remarkable woman. Widowed when very young, she single-handedly brought up Mom and Auntie, provided them with a good education. She had to sell off her property and jewellery to do so. Both Mom and Auntie completed their post-graduation and joined jobs as college lecturers. When Nanima was around 65 years old, she distributed all remaining wealth to her daughters, saying she did not need any money because her daughters would look after her. Nanima’s life continued to centre on her daughters; she shuttled between them depending on their needs (childbirth, young grand children to look after, etc.)
I feel very bad that Nanima spent her last years in an environment where her confusion and frustration was mistaken for stubbornness, and where her daughters, whom she loved dearly, were unable to give her the tender care she needed because they could not (or would not) understand her problems.
Their lack of understanding made life more difficult for them, too. Even now, they are not at peace about this part of their lives.
Mom’s denial about dementia extends even today, to people around her.
One would think that, having seen the problems Nanima faced, and with all the media coverage of dementia nowadays, an educated and intelligent person like Mom would accept that dementia is a genuine problem.
But those years of suffering that Nanima went through, and that Mom struggled through, have taught her nothing. Mom still does not understand that a person with dementia needs to be treated differently, and that caregivers can help the patient and themselves if they understand that the patient lives in a different reality and adjust their interactions for that.
I strongly feel that even if Mom was ignorant about dementia back then, she can at least be more sensitive with patients now. But Mom’s denial about Nanima extends into denying that anyone could have dementia. She doesn’t state it that way, but she behaves as if no one could have dementia.
Recently, Mom and I visited an elderly family friend whose wife has been diagnosed with dementia. The lady’s daughter informed us of the diagnosis before taking us to meet the lady, and explained that the lady gets very upset if asked questions.
As soon as we met the lady, Mom loudly asked her whether she recognized us. The lady looked puzzled and then said, “Of course,” but it was obvious that she did not. Mom asked her, “So what is my name?” At that point, I quickly introduced ourselves, while glaring at Mom, indicating to her to stop.
Mom did not stop. Over the half-hour we were there, Mom scolded this lady for being dependent on her daughter and for having stopped cooking. She told the dementia patient that she should have more “will power”. Mom even boasted that she would never become dependent on anyone like this lady had become. I tried to shoo Mom to keep quiet, and changed the topic a few times, but Mom only flared up more, claiming that it is daughters like me and this lady’s daughter who are the real problem because we unnecessarily stop elders from doing things and are “controlling.”
At one point, Mom asked the lady, “So, which book are you reading now?” The lady said she was no longer able to read much, and Mom began scolding her for not trying hard enough.
On our way back, I told Mom that her behavior was very inconsiderate to both the lady and the family, especially since we had been clearly told about the lady’s medical problem. To that, Mom said that there was no problem that willpower could not solve, and that the lady was just being lazy, and this so-called dementia was just an excuse. “I will never become like her,” she declared.
We argued for a while, but how does one make a person understand if the person is determined not to? If a person of Mom’s profile can’t understand that dementia is caused by a problem in the brain, how can we ever spread awareness?
Mom is now in her seventies. Surely, she should accept that dementia could happen to her, too, and if so, she would want people to be compassionate while caring for her! But perhaps she is in denial because she is scared she will be like her mother and that we will treat her the way she treated her mother. Maybe it is easier for her to think she can use willpower to prevent such a problem. That is denial at its peak, but I cannot think of a way to make her understand.
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.
Nayantara (name changed) is in her forties, and lives with her parents because her father has dementia and her mother needs help in his care. Unfortunately, though her father has been showing strange behavior for years, and has been diagnosed with dementia, family members (his relatives and his wife) refuse to accept the diagnosis and insist that he is normal. When Nayantara tries to explain the problem, they accuse her of exaggerating, and sometimes even doubt her motives. They also accuse her of not taking care of her father, though they are not really willing to help.[note]
In this interview, Nayantara describes the situation and talks of the strange ways in which her father acts, and how she copes with the stress.
Dementia Care Notes: Please give us some background information first.
Nayantara: Father comes from a poor family. He has a physical deformity because of which his parents neglected him and were unwilling to pay for his education. Being a brilliant student, he funded his studies by taking tuitions for younger children. His childhood problems, however, left him an insecure person, prone to anger.
All those years we just thought he was a difficult man to live with.
Father’s strange behavior is something my sister and I have seen for many years, such as episodes of disproportionate anger and walking out of the house. My mother always considered them normal, and as they increased, we did not really think there was a problem and did not consult a doctor about them. All those years we just thought he was a difficult man to live with.
When I finally approached a psychiatrist because of some more problems we faced, the psychiatrist conducted tests on Father and gave the diagnosis of dementia. He told me that the dementia had probably been growing over the years and may have been the reason for the troublesome behavior earlier.
The diagnosis happened about three years ago, and Father has been getting worse in spite of the best care we are able to give. Earlier, he would walk a lot and talk to people; now he has withdrawn completely. Unfortunately, no one in the family believes the diagnosis and they treat him as a normal person and expect him to behave as one. This puts stress on him, because he is not able to remember the incidents they mention, and gets even more agitated. Once, for a period of a few weeks, he was convinced that I was trying to kill him. That was particularly traumatic for me, because people believed his accusations.
Currently, we have employed a full-time attendant so that he gets the attention he wants. He is relatively stable and withdrawn, and seems okay most of the time, but I am finding it a problem to balance caring for him and working to earn money to pay for the expenses we incur.
Dementia Care Notes: You mentioned earlier episodes of strange behavior, prior to the diagnosis. Please describe them.
Nayantara: Often, Father would get angry for trivial reasons. For example, if guests/ relatives had come over, he felt he was not getting attention the way he should, and would get furious. If someone else was served water first, he claimed he was being mistreated or neglected. In that mood, he would throw things (bottles, plates, whatever he could) or refuse to eat food.
He also started walking out of the house in anger. He would not come back on his own, and my sister and I would have to go around looking for him. Usually, he would always head for the park near our house, perhaps to make sure that we would find him and bring him back.
These episodes would upset everyone, and we would get angry at him after bringing him back, and he would yell back, and the whole mutual screaming would continue for two to four days before it subsided.
Sometimes, instead of getting angry and throwing a tantrum, Father would react to his perceived neglect by withdrawing totally and not talking to anyone.
Most of these episodes were related to there being a crowd in the house, such as for a family gathering or function.
All through these, my mother and others behaved as if this was normal behavior, and my sister and I also assumed this to be so.
Dementia Care Notes: What made you consult a psychiatrist?
Nayantara: Around three years ago, Father changed in many visible ways. One was that he became obviously weaker physically. He used to be so fond of long walks, but now he started spending hours at home, just sitting and looking at the wall. Though he had always been an introvert, his talking reduced to a level that was alarmingly low.
He also became very suspicious of everyone and everything, and talked as if everyone was conspiring to hurt him or rob him.
I felt this was not normal, and decided to consult a psychiatrist.
Dementia Care Notes: How did getting a diagnosis change things?
Nayantara: The main change was that I understood he had a problem and would not get so upset when he was angry or behaved in inconvenient ways.
Unfortunately, my mother and the rest of the family do not believe the diagnosis.
Dementia Care Notes: What does your mother say about his behavior if she does not accept the diagnosis? When he accuses you of mistreating him, does she believe his accusations?
Nayantara: My mother thinks Father is normal, and that all his behavior has been, and continues to be normal. She says his walking out of the house and not returning till we located him and brought him back, was normal. She believes he is still normal.
She does not believe his accusations, but has never stood up for me or defended me with him or with my aunts when he has accused me. Father always suppressed her, not allowing her to go out of the house or talk to people, and she has never developed the confidence of tackling him, so she does not know how to react to such accusations.
Dementia Care Notes: Pleasedescribe the incident where your father thought you were trying to get him murdered.
Nayantara: That was awful.
…my father became convinced that I had hired someone to kill him
I don’t know what prompted it, but my father became convinced that I had hired someone to kill him. He thought I was after his money. He told my mother; she did not believe him, but didn’t know what to say to him. He then called up his sisters in Hyderabad and they rushed over to Bangalore the very next day. He told them to go to the police immediately because his life was in danger.
My aunts began to scold me. They did not go to the police but started telling me that what I was doing was wrong and that I should not do such a wrong thing. They told me to transfer his money to their names and said that once I did that, they would look after him.
I felt very hurt, but I tried to stay in control, and told them that he was confused and not normal. They did not believe me, and kept saying I was cooking things up. I asked them to wait for a day or so and watch his behavior before deciding.
By evening, Father had started acting vague, and my aunts said that maybe there was a problem with him. I asked them to stay for another day to observe him but they said they had families to look after, and left that very evening.
I felt very bad that they had believed him and that everyone had gathered to curse me like that. I almost broke down.
Dementia Care Notes: But if they thought his life was in danger, wouldn’t they have tried to take him away from home first, instead of ‘scolding’ you? If they believed him even a little, would they have gone back and left him here, living with you?
Nayantara: I don’t know why they behaved in that way if they didn’t really believe him. The morning they came, they kept insisting that I transfer all the money to their account so that they can look after him, and when I refused, they seemed to lose interest. Maybe they spoke like that not because they believed him but because they thought he would be easy to look after and they felt he had a lot of money. I don’t know what they really believed or wanted; all I know is they kept saying harsh things to me and I almost broke down.
Dementia Care Notes: Did your aunts know of the diagnosis?
Nayantara: Yes, I had told them of the diagnosis, but they claimed I am exaggerating normal problems any old person has, just to get his money.
One thing is, Father’s behavior is not uniform. On some days, he seems almost normal. Also, when they visit for a short while, he seems normal, and his strange behavior becomes obvious only if they stay long enough, which they do not. Even if he behaves oddly, they say it is an occasional aberration, not a medical problem.
I have a medical certificate of the psychiatrist who has been attending to Father. When I told my relatives about it, they said I must have influenced or bribed the psychiatrist to give such a certificate and that I was trying to get Father declared mentally unfit to get his money.
I have stopped trying to explain that Father has a medical condition
I have stopped trying to explain that Father has a medical condition or that I have a formal diagnosis for him. What’s the point! Instead of believing me or trying to understand, they only start accusing me of things like wanting to rob Father! They are not willing to help but very quick to criticise.
Dementia Care Notes: Are your aunts still in touch with your father? Does he still complain about you to them?
Nayantara: Whenever my aunts talk to Father, he gets agitated because they remind him of something that disturbs him, or that he does not remember. They do not take his mental state into account while talking to him. I have requested them not to talk to him, but they continue to call him up once in a while, and every time they do so, he gets disturbed and becomes difficult to handle.
Dementia Care Notes: Has he often shown fear of attack and murder?
Nayantara: There was once a period of one-and-a-half month when Father thought that my mother was trying to kill him and would become very agitated if he saw her. For that entire period, my mother moved to my room and made sure that Father did not see her. As Father was mainly staying in his room all the time, we were able to do this.
Then, there was this phase when he was convinced that something was being stolen from his room every day. He would open and close his cupboard several times (all in the evening, after 6pm) to confirm that everything was still there.
Poisoning is another thing Father was very scared of. Once he stopped drinking milk for several days, claiming it did not taste the way it should and had been poisoned.
His paranoia was so great that for several months, he made it a daily routine that I should touch him and swear that I would not cheat him or kill him. He even insisted that I fall at his feet as part of this daily swearing. He made me write this on stamped paper as a guarantee and kept this paper carefully in his cupboard, as if that was protection.
Dementia Care Notes: Are there other strange behavior patterns you’d like to share?
Nayantara: Well, Father acts strange in many ways. Medicines, for example. He will keep acting suspicious of his medicines and say he wants a medicine changed. He refuses to take the old medicine, claiming it is ineffective, or that it will harm him. I therefore have to consult the doctor and get the medicine replaced, typically by another brand for the same medicine.
He seems very insecure in spite of all we do to keep him safe and happy.
Another thing that bothers Father is the thought of death. He is very scared of it, and cannot bear to see any death in any TV serial. He cannot even bear to see someone cry, and makes us put off the TV if there is a scene involving crying. He seems very insecure in spite of all we do to keep him safe and happy.
On some days, if I touch him affectionately, he looks happy. On other days, he reacts to that gesture with surprise and says, why, what’s wrong, am I dying?
Father’s disorientation causes all sorts of problems and it is not always possible to prevent them. For example, he likes to drink hot milk very early in the morning, and so I keep it in a flask. I heat it late at night so that it is still hot when he takes it at his usual time. One day he decided to have it earlier, just after I’d prepared the flask for him, and he poured the milk directly in his mouth instead of using the glass I keep near the flask. The milk was so hot it scalded him, and he spilled it over his body. As a result, he got boils in his mouth and all over his body and it took many weeks for the boils to go because he is a diabetic. We need to be very careful all the time, because he does not know what he is doing.
Sometimes, when I go out, Father feels uncomfortable and wants me back. For this, he complains of things that he knows will make me rush back. A few days ago, for example, I had gone out and I got a call from home that Father was complaining of severe chest pain. Though I suspected this was not so, I could not take any risk, and rushed back. I talked to the doctor, who said that there was a pill he needed to take if he genuinely had pain, but he should not take the pill if there was no pain. I took the pill to him and told him what the doctor had said, and Father just shrugged and said that he didn’t have any pain.
One more thing: Father is very good at hiding things. Because he wants to have money easily available, I have given him a thousand rupees. He keeps this money on him all the time. He even holds it in his hand when he is changing his clothes or having a bath. Sometimes, when he cannot hold it, he hides it in his room, but he always manages to find the money. He may tell the attendant looking after him where he has hidden the money, but he also instructs her not to tell anyone else or the money will get stolen.
Dementia Care Notes: Please share any incident which was heart-warming for you.
Nayantara: Once, my guru was supposed to come home for a visit. I was very tense as I thought Father would complain about me to him, telling him how bad I was, how I did not care for him, spilling out all those complaints as he did when his sisters came.
But when guruji sat down with Father, Father was very mellow. He told guruji that I was looking after him very well, and that I was a very good daughter and that he doesn’t have to worry about anything because I am there with him.
I was totally stunned by Father’s words, and very touched. I felt that, deep down, Father appreciates what I do, and so my effort is worthwhile.
Dementia Care Notes: Please describe your father’s current state.
Nayantara: Father is totally withdrawn now. Once, he would walk several kilometres every day, but now he stays in his room all the time. He does not try to walk out of the house any more; I think he is scared that we will not bring him back.
He also needs help for his normal activities, like batheing and eating. We have got a full-time attendant to help him, and I think that is good because he is very happy that there is someone with him all the time. He keeps telling her to do things, get me water, take the water away, put on the fan, put off the fan, fetch me the kerchief, keep it back, and so on. When he would do it earlier with my mother or me, we found it difficult to handle because we would have to drop whatever we were doing to attend to his demands, but this attendant is employed for just this work, and she is able to do what he wants, and he is happy he is getting the attention he likes to get.
Healthwise, Father also has several other problems. He has gastroparalysis, and is a diabetic and hypertensive. He also has vascular disease and is a cardiac patient. This means that we have to keep taking him for various checkups, and that is a struggle. Because of his dementia, he is often paranoid and wants to change doctors because he starts claiming that the current doctor is trying to poison him.
There are days when the situation depresses Father. In spite of all we are doing to keep him happy, he claims that he wants to die, and threatens to jump out of the window. That hurt me, because we are really doing so much to keep him happy. What else could we do? But he is not happy. We have taken precautions to make sure he cannot jump out of the window, but the fact that he thought about it made me very sad.
Dementia Care Notes: Please describe how you and your mother cope with the stress of caregiving.
Nayantara: I am fortunate enough to have a good circle of friends who understand my problems and I can talk to them and meet them. In addition to meeting friends, I love music, and I sing to overcome my stress. I have also found ways to feel more at peace about caregiving now.
My mother, on the other hand, feels neglected and lonely. She gets depressed if I go out of the house, and wants me to stay at home all the time, saying it is my duty to stay with her and not go out. I would earlier listen to her, but then I realised that I cannot pause my life because of this; my life has to go on in parallel.
Dementia Care Notes: You mentioned that you are more peaceful about caregiving now. Please share what has helped you do what you must do.
Nayantara: What has made the greatest difference is my de-personalizing the situation. Earlier, whenever I interacted with him, I thought of him as my father, and of myself as a daughter, and all sort of expectations and disappointments and hurts came in, because I did not want to be accused of all sort of things by my father. I expected affection, and there was none.
Now, before I go in his presence, I remind myself that he is a patient, and that I am like a nurse. That gives me the strength to take any criticism or agitation in my stride.
Father knows that I am more important in his care than others who work for him. When he has a problem, like when he thinks he is unwell, he calls me to tell me about it, though he may not tell my mother or the nurse. He will call me and tell me about his problem, and say I should take him to a doctor otherwise things will get worse. At that time, if my response is not the way he wants it, or if he thinks I am not paying attention or getting agitated, he also gets agitated. Once he gets agitated, he is extremely difficult to handle. Now I am alert about this, and am careful to be attentive and comforting when he voices a concern.
Also, when I feel he is getting agitated about something that I cannot help in, I move away before his agitation increases. He usually does not get so agitated with others, perhaps because he depends more on me. If I move away before his agitation is in full-swing, he forgets about his problem and becomes normal faster.
Dementia Care Notes: What are your plans for the future, with respect to caregiving?
Nayantara: Currently, having learnt so much about how to handle him, and also having found an attendant who is satisfactory, I am comfortable with the caregiving arrangement. It gets tiring on some days, and also stressful, especially when I have to rush him to a doctor or call a doctor home because he insists that his medication is wrong, but on most days, I can handle it.
…the care takes up so much time and energy that it becomes difficult to earn enough money
One concern I have is financial. I have to not just support my parents in terms of care and errands and all that, I also have to earn enough to support them financially. But the care takes up so much time and energy that it becomes difficult to earn enough money. I have to sometimes refuse work because I need to be there for my father. Also, I work from home, and cannot always do so when he is not well, or is agitated. As his state becomes worse, I do not know how I will get the time I need to care for him while also earning enough to pay for the care he needs.
Another area of concern is my own life. My parents expect me to make them the centre of their lives. My mother always says it is my duty to always be available at home, and behaves as if going out for even a few hours is some type of neglect of my parents. In the beginning, I would listen to her, but then I realised that I need to have my own life, too. But as the care increases, more and more of my own need for variety and my own “space” is getting affected, and I am not sure how I will balance all these along with earning enough money and also taking care of my parents.
Even so, I plan to take care of them to the best of my ability, as long as I can.
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.
David D’Souza lives in Bangalore. His mother suffered from Alzheimer’s Disease. Off and on for ten years, till she passed away, David and his siblings coordinated to provide care for his mother, who lived in a different city (where none of the siblings lived). Below, he shares the arrangement they used for taking care of his mother, and the problems faced.[note]
Dementia Care Notes: Please describe the arrangement for your mother’s caregiving.
David: There were two women hired to attend to my mother round the clock: Cooking, washing, batheing, washing clothes, cutting hair, cutting nails, dressing, accompanying her to Church during the first 5 of 10 years. Later my mother could not walk to Church so the attendants would walk with her in the compound of the house daily for about an hour.
When my mother became bed-ridden they continued the above and now added physiotherapy sessions every evening!
Dementia Care Notes: What were the key issues and problems that you faced?
David: In the first five years it was how to keep the attendants motivated. They seemed to be bent on extracting as much money as they could for their services. Later their dedication to my mother was unquestionable.
Another issue was arranging replacements when these two had to go on leave.
Yet another issue was that the family members and friends of the attendants also landed up at my mother’s house to visit their relatives.
…we ignored the issues of honesty of the attendants because they took proper care of our mother
The two attendants had the full run of the house, and at the end of ten years very few of the belongings, clothes, utensils and house decorations remained. But as my brothers, myself, and our families were all spread out in different cities, we ignored the issues of honesty of the attendants because they took proper care of our mother. It was an extremely small price to pay for the quality and dedication they showed to my mother.
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Rajesh is a management consultant living in Bangalore. His wife’s mother started showing dementia symptoms around 13 years ago and was diagnosed 10 years ago. Rajesh’s wife, the primary caregiver, got increasingly pulled into the care work. In this candid write-up, Rajesh shares how he failed to support his wife in the beginning. Based on his experience, he shares tips on how close family members can support primary caregivers.[note]
Rajesh writes:
This note is intended for family members close to the main caregiver, such as the caregiver’s spouse, siblings, and children.
My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.
Briefly,
I did not try to learn about dementia or its caregiving after the diagnosis. I had no idea of what to expect. I think I expected no impact.
I underestimated the amount of work my wife was doing. I did not appreciate that she was getting physically and emotionally overwhelmed. I thought she was “negative” when she looked worried. I also thought she was overreacting when she asked me to reduce travel overseas because she would not be able to handle emergencies.
Most people in India treat dementia patients like they would treat any other elder. Close relatives would tell my mother-in-law to show more “willpower.” They criticized and mocked her for her “dependence” on my wife. They blamed my wife of negligence and ill-treatment based on her mother’s confused statements and their ignorance about dementia. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments. I did not try to explain dementia facts to relatives. My wife was completely isolated by my relatives.
I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.
As caregiving took up more and more of my wife’s time and energy she had to give up the professional work she loved. She also had to give up her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realize that she needed emotional and functional support, and that she needed breaks from caregiving.
I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.
My way of looking at things changed once I increased my participation in the care. I found that some situations around care were more stressful than what I faced in my professional life with all its deadlines and deliverables. It was unrealistic to expect the primary caregiver to handle this work alone without family support.
Below are some of my specific experiences and suggestions for people close to the patient and primary caregiver:
Learn about dementia and caregiving.
After my mother-in-law was diagnosed, my wife read up on dementia and caregiving. She pointed me to references. But in my view the doctor had talked of memory loss and I did not need to read more about it. My ignorance affected many of my actions and decisions.
It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.
When my mother-in-law’s behavior became stranger and embarrassing, I thought of her as “a difficult person to live with”. It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.
I did not realize that dementia gets worse with time. So I did not plan for the fact that her care would also keep increasing.
My ignorance also meant that I could no longer talk with my mother-in-law. I began avoiding her because of her “unreasonable” behavior. It was many years before I figured out how to communicate with her.
My suggestion to anyone close to a dementia patient or the primary caregiver is to understand dementia better. Learn how it may be affecting the patient’s behavior. Understand how the problems grow with time, and how the type of care will have to be changed because of this. In the early stages, the patients are physically strong. They are leading active lives and trying to cope with the confusion and other problems but they may hide their problems and resist help. Some may be stubborn or even abusive. Things change a lot with time. Towards the later part, they are usually bedridden and cannot do even the basic tasks for themselves, when they cannot speak, and are sleeping most of the time. There are many books, websites, videos, and other resources for understanding dementia.
You must also learn what caregiving involves. This includes effective ways to communicate, helping with activities, handling odd behavior. You need to understand these to continue to interact with the patient, and to help the primary caregiver.
Tell people around you about dementia and the caregiver’s role
My experience with my relatives showed that people do not believe the caregiver’s explanations about dementia. This is especially true if they think of the caregiver as an “outsider,” like a daughter-in-law from a different community and caste. Because they do not understand the patient’s problems they do not understand that caring for such a person could be different from living with a normal elder.
One example: My mother-in-law was very uncomfortable going out, so my wife reduced her outings to what was really needed so as to reduce stress. My relatives called my wife cruel and said they would not want to be treated like this when they are old. They did not understand that a dementia patient gets stressed if the routine is changed or when there are too many new people and places. They ignored my wife when she tried explain. They assumed she was hiding her neglect and laziness and cruelty.
I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong. I thought we would not need support from others. This cutting off only made things more difficult for my wife.
I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong.
When my mother-in-law was distressed because of what my relatives said to her, I told her to “adjust” and to “ignore” them. Looking back, that was very odd of me. I expected her to be more understanding and adaptable than my relatives who were in good health and fully alert mentally.
We must ensure that persons interacting with patients do not agitate or upset them. Also, make sure that they do not judge and criticize the caregiver because they don’t know enough about the patient’s needs. Visitors should understand that the patient’s complaints may be a result of confusion and delusions.
Explanations are believed more if given by someone other than the caregivers. When caregivers explain, people think they are making excuses to justify neglect or cruelty.
Explaining the situation is not easy. You may have to do it differently for each relative or neighbour. Some persons may be willing to read a pamphlet, others may not. Some may be ready to watch a video. Some may respond better to explanations and examples of other patients. Examples could be listing other family members who had behaved strangely and may have had dementia. Or famous persons with dementia.
You may need to request someone neutral, like a social worker or a specialist, to explain.
Explanations usually have to be repeated many times before people really understand the situation.
Try to reduce caregiver isolation
Many of us think that when caregivers seem down they are being negative and defeatist and not “pulling themselves together.”
When my wife seemed quiet or looked unhappy, I assumed she was being too emotional. I thought she worried too much and that she was not able to keep things aside and enjoy life. If she tried discussing possible emergencies or problems she faced with the attendant, I dismissed these as minor problems and told her she was being negative. This hurt her deeply because she expected me to understand. As she once said, “If even you do not understand, why would anyone else?”
Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.
Many factors contribute to caregiver isolation. As the patients start needing closer attention, caregivers are more confined to home and also isolated from others. They often have to give up any work or hobbies that require going out of the house or meeting people. They cancel social outings because of last-minute care problems and so people stop inviting them. Criticism, like what my wife faced, makes them withdraw further. Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.
Family and friends close to the caregivers can help reduce this isolation. If they understand how emotionally stressful care is, they can find ways to support the caregivers and reduce stress.
My advice to people is:
Try to understand how isolated the primary caregiver may be feeling.
Think of the emotional difficulty of caring for someone who is mentally deteriorating and knowing there is no hope of improvement. Also, there is no way to know how long this care will go on.
Think of how conflicting it may be for a caregiver to imagine getting “free” of the caregiving role. Sometimes, frustrated because we could not go together for vacations, I would fantasize about the fun my wife and I would have later. I was surprised when my wife didn’t respond with enthusiasm. Later I realized that I was, in effect, asking her to look forward to a time after her mother’s death; thinking like this would make her feel guilty. She would also find it tough to go back and provide compassionate care for her mother without any sense of guilt or resentment.
When providing support to the caregiver, provide it in a way that suits the caregiver’s personality. Some caregivers like distractions and comic movies, others want appreciation of their work. Many want to be heard when they talk of their problems. They like sincere reassuring statements like “I am here to help in whatever way required”.
Don’t act preachy, lecture, or provide empty suggestions like “try to lighten up” or “take care of yourself” or “take a break”—-they sound insensitive if they are not practical.
See how you can to give the caregiver time off breaks where the caregiver can meet people and do enjoyable activities. Most caregivers do not ask for help because they don’t want to be preached to. As someone close to the caregiver, you can notice the stress and offer help.
Consider the primary caregiver’s increasing workload while making choices that affect your availability to support the person.
After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.
My professional work had peaked around at a time my mother-in-law began showing even higher degree of agitation and self-harm. My wife was busy with caregiving work. Because I was over-busy, she also had to manage various home administration tasks. These included bank work, handling my accounts, and even correspondence with tax authorities. I was travelling almost all the time. My wife was left alone to handle situations when my mother-in-law fell ill or when the attendant vanished without notice.
After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.
Dementia goes on for many years. The care needed also keeps increasing. Except in the beginning, it is almost full time work. The primary caregiver cannot do this alone, and others have to get more involved in the care. We also have to arrange for the money needed.
In long-term care facilities attendants work in shifts. There are also support staff and counsellors. The employees get weekly holidays. When the patient is cared for at home, we cannot expect one primary caregiver to do all the work alone, all day and night long, and without any break!
My suggestion is that family members should understand the real care load and plan for changes to their work commitments. This could involve:
The type of outside work being done, in terms of the time and stress involved. A very stressful job will leave you no time or energy to help the primary caregiver.
City you are working in, and travel requirements of the job. You cannot give much physical or emotional support if you keep going to other cities for work. If you travel to other countries, it is even lower.
Flexibility to handle emergencies. Your job may not be flexible enough for you to be available for emergencies. For example, if you need to be present in another city on a particular date, or if you have many difficult deadlines, you cannot help even in emergencies, when your help is critical.
You may have to look at your lifestyle choices also, such as:
Location of where you stay, the kind of house, privacy, etc. For example, you, the caregiver and the patient may have to move in together or stay close to each other. Any change of residence can severely affect the patient, so you may be the one who moves, not the patient.
The house may need changes for the safety of the patient and for making care easier. Furniture may need replacement. Rearrangement may be needed so that visitors coming to meet you don’t disturb the patient. You may need to entertain your guests somewhere else if entertaining them at home is inconvenient for the patient. If you use paid help, then you need to consider privacy and how to ensure safety of valuables.
Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls.
Not all leisure activities will be possible. Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls. You may have to depend on reading books and and taking walks in neighbourhood parks or going for short scenic drives, instead of taking weekend breaks outside the city. Visits to relatives in other cities and countries may be utterly infeasible.
Functional support.
Even if you are not good at emotional support, you can help in many functional areas. Caregiving for a dementia patient is sometimes called a 36-hour job. I think it is more than that, so every bit helps.
Here are some examples of functional support to consider:
Investigate and evaluate professional caregivers, respite homes, home nursing, as the primary caregiver may not have the time and energy to do this research.
Set up the home for handling emergencies.
Arrange doctor visits, lab tests, and getting medical supplies.
Ensure that the caregiver and the patient have nutritious food.
Arrange (appropriate) entertainment for the caregiver and patient, to give them a change and a suitable break. Make sure that the break does not create more issues later. For example, the patient may enjoy a visit by relatives, or a visit to the market, but display disturbed behavior after such a visit.
Provide respite to the caregiver by taking over the patient’s care for some time. To do this you will have to learn caregiving skills, develop rapport with the patient, and earn the caregiver’s confidence that you can do this task.
Jointly with the caregiver, re-arrange the house. This may require some bigger changes like putting grab rails, replacing furniture, and getting , equipment like hospital bed, blood pressure equipment, wheelchair, etc.
Take over some of the activities from the primary caregiver. For example, grocery and vegetable shopping, utility payments, house repair, tax returns, investments, bank work, vehicle repair, paperwork like passports, identity papers, driving licenses, etc.
In conclusion:
The primary caregiver invests a large chunk of life to care for the dementia patient. This includes giving up on professional life, leisure, and social life. Savings may get wiped out. While we cannot give them back their life, we can take out the time and energy to help them. Helping them is a meaningful way of using our own time and energy and can also be very fulfilling for us.
Thank you for sharing your experience and listing these useful tips, Rajesh.
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Ranganath Subramoney is a Dubai-based consultant. His father, now 86 years old, lives in Bangalore and is suffering from Parkinsonian dementia; the caregiving is being primarily handled by Ranganath’s 78 years old mother, but Ranganath is in Bangalore ten days a month to help, besides remaining available over phone. Here Ranganath shares how he and his siblings try to ensure that their father is cared for, and their mother does not get overwhelmed.[note]
Dementia Care Notes: Your mother has already described how care is being coordinated currently for your father by using a number of services (attendants for the day and night, and a dementia day care centre).
Ranganath: Yes, my mother has accurately described the modality used for my father’s care.
I’d like to add that while the use of attendants for the day and night is good in its form and function, any disruption in the availability of attendants throws my mother into panic.
For example, sometimes the attendant who is supposed to report for work calls up to say that he/ she will be delayed by a few hours, or that he/ she cannot come on that particular day because of some personal reasons. When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies. As a family, we are very severely inconvenienced by these situations. I am, frankly, not surprised at these problems because these attendants are required to work seven days a week and naturally need time off to attend to their own personal work and sort out their problems. A system of rotation of attendants may be more sustainable for agencies.
Another problem we face is that the quality of the staff sent varies a lot. Some attendants are well trained, others are not. Sometimes, the agency sends attendants who do not know how to do the work they have to do, and my mother has to instruct them in great detail and supervise them closely.
Dementia Care Notes: You spend ten days a month in Bangalore, and your siblings also visit as often as they can, but there are several days a month when neither you nor your siblings are in Bangalore. Please tell us how your mother handles problems and emergencies on such days.
Ranganath: My parents were amongst the first families to move into this apartment complex twenty years ago. We are fortunate that everyone in the building knows us and is very helpful. For example, if the attendant is delayed, the watchman or lift operator will lift my father to or from the bed, and so on. Neighbours also step in to help whenever needed.
If the problem cannot be resolved with available help, one of us siblings comes here. My sister in Vizag is closest, and can arrive earliest in case of an emergency. Also, I have often wrapped up my work and come here within two days to help cope with the situation.
It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do.
My mother obviously gets very tense when there is a problem. She is alone, old, and frail. We encourage her to call us whenever she wants, however small or big the problem is. It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do. We try to make sure she does not panic or feel helpless.
It is not just for setbacks that my mother needs support. The whole situation is overwhelming for her, and she feels better if she is able to talk to one of us, or to her sister or other relatives whenever she’s unhappy or worried. All of us are available to her over phone and we are very clear that large phone bills should not be a deterrent for her.
My sister talks to my mother every day. My brother and I talk to her two or three times a week, and this goes up to three times a day or more on the days when there is a problem. Basically, we do not want my mother to feel alone at any time.
We siblings also keep in constant touch with each other so that we remain updated on the situation and on my mother’s emotional state.
With all the phone calls between us and with my mother, I think the biggest beneficiaries of our situation are the telecom companies 🙂
Dementia Care Notes: How have you siblings been coordinating to share information and take decisions together? How do you share the work and responsibility?
Ranganath: I am based in Dubai. My brother is in Mumbai, and my sister in Vizag.
In the earlier days, when my father was being diagnosed and the treatment decided on, my siblings made frequent visits here to take him to doctors and make decisions on treatment and medications and so on. My siblings would call/ e-mail and inform me almost immediately of what a doctor diagnosed or advised, or what the test results were. We also surfed the Internet extensively to understand what the doctors had said, and to research the suggested drugs (will they help, what are the side-effects, and so on). Whenever possible, we discussed to decide between options.
In those early days, because of the way my business was structured, I was able to visit only once every two months, and my siblings, being present on the spot more often, took the lead in the work and the decisions.
As my siblings are both working in jobs, they were not able to keep up the intensity of frequent trips to Bangalore because their leave got exhausted. Meanwhile, I redesigned my consulting work to make more time available for trips to Bangalore.
Currently, I am in Bangalore around ten days a month, and will be increasing this over the next few months. While I and my siblings continue to talk over phone and exchange e-mails very frequently, I am taking the lead in terms of decisions as I am on the spot more often. I am able to understand the options better and see the impact of medications and can set the tone of what we do based on this.
I also make it a point to arrange my trips to Bangalore so as to overlap with my siblings’ presence here, so that we can meet face-to-face and talk about things.
Dementia Care Notes: How often are you and your siblings in Bangalore, and how do you plan to increase your availability over time?
Ranganath: My sister is currently looking after her father-in-law, a dementia patient in his late 80s. Because she already has her hands full with caregiving for her father-in-law, she is able to schedule only one trip every three months or so. However, being in Vizag, she is closest to Bangalore and therefore able to arrive here fastest in case of emergency.
My Mumbai-based brother manages a three or four day trip every six weeks or so, typically combining some leave with a weekend.
I am currently in Bangalore around ten days a month, an arrangement made feasible because of the nature of my work.
My work already includes travel, and my clients are used to getting my services mainly over phone and e-mail. Any face-to-face meetings with them are anyway scheduled in advance. I have reduced my overall work, and also told my clients about my reduced availability for face-to-face meetings.
I have been increasing my availability in Bangalore in a phased way. For the period around March 2009 to June 2010, I was here for five to six days a month. With my father’s state worsening, I ramped this up to ten days a month since July 2010. I am continuing to adjust my workload so as to increase my availability here, and by March/ April 2011, I expect to spend around three weeks every month in Bangalore.
In essence, I am relocating to Bangalore, and using this as the base of my work instead of Dubai, which means that I will be living here and traveling out of Bangalore when I need to visit other cities and countries for my work. My family will also relocate to Bangalore at a convenient point, in sync with the schooling year of my daughter.
…by increasing my availability here, I am increasing the amount of certainty every month.
The way I see it, when one of us siblings is in Bangalore, my mother gets an environment of support and certainty, and by increasing my availability here, I am increasing the amount of certainty every month.
Dementia Care Notes: Please share your interactions with your father, and his current state.
Ranganath: In the earlier days, it took me an effort to remember that he was facing problems in understanding and responding. There would be times when I’d ask him to do something, such as “turn to your left side”, and he would do nothing even after I asked him a number of times. The natural tendency in such a case was to feel irritation and raise my voice, to lose my cool. But soon enough, it became obvious to me that he did not understand. I learnt, over time, to remember that he was not able to “receive” me when I asked him to do something, and to remain calm. If he did not respond, I would bend his legs and turn him over myself.
What took time was emotionally registering the fact that his condition was not curable.
Now, he hardly says anything on his own. If people around him do not talk, he stays quiet. But he does recognize people even if he does not participate. When visitors come, and are talking, he sometimes even says something–it may be something tangential, like “should I get you something to eat” (which he cannot do anyway). Sometimes, when there are people around him, he tries telling us a joke or sing a song. It is obvious that he enjoys company.
We try to make sure someone visits him every few weeks, so that he feels good and can enjoy their company.
Dementia Care Notes: Please share any overall comments about caregiving, long-term plans, and all that.
Ranganath: I think it is natural that family members have to adjust our lives to do what needs to be done. We all have to be ready to make such changes in our lives. Perhaps we should plan ahead for such a possibility, and be mentally prepared for it.
From what I have noticed, when I am in Bangalore with my mother, it makes a lot of difference to her. She is not tense about the care, and setbacks do not make her panic. She does not feel so lonely. I am glad I am able to increase my time here, with her.
Another thing is that my father, in spite of his state, responds to and appreciates company sometimes, and I am able to enjoy moments of interaction with him. Again, my trips here make that possible.
Caregiving for my father, and supporting my mother, is a concern our entire family shares.
All of us are concerned about my mother, who is not in a state to handle care alone, and we do not want her to collapse because of this stress. Hopefully our efforts to be with her for most of the month and thus reduce the “window of uncertainty” will help; she is definitely happier and more comfortable when one of us siblings is around.
I cherish and appreciate the collective concern and care displayed by all immediate family members. Over phone and with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.
Over phone and with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.
My mother also needs to get breaks. We have been discussing the use of “respite care” for my father at specialized centres for some days a month (when none of us siblings can be around) so that my mother can visit her sister and other relatives during that time, and does not have to handle my father’s care alone.
After much deliberation we have recently taken the first step in trying this out. We have availed the respite care facility in Bangalore to place my father there for some days and brought my mother to Mumbai to spend some time with my brother and sister-in-law, hoping this will ease my mother’s stress levels and allow her to regain her composure and strength (both have been depleted over the last 18 months).
Looking ahead, if this works well, we would probably execute this plan on a monthly basis, rotating mother’s stay with my sister, etc. confident that our father is being well cared for in the Nightingale respite care facility in Bangalore.
But we are also determined to keep father with us, in his home, during remainder of the month when one of us is present along with my mother for the caregiving.
And so we learn, adjust, and act!
Thank you, Ranganath, for sharing in detail how the family is working together for the caregiving of your father and for ensuring that your mother is not overwhelmed by the caregiving.
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility.[note]
Dementia Care Notes: Could you give us background information about the case and the sequence of events?
Vidya: Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.
Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.
Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.
As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.
But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own and we all decided to get some home-help. My mother employed a ‘nurse’ from a well-known organization in Kerala. With this, we started a phase where we used a number of such ‘nurses’ to care for Granny.
These nurses were not actually trained in nursing, so to say. They were just young girls in need of a job, who had taken on the task of caring for an ill person as best as they could, for a fee. Some of them had previous experience elsewhere. Some were good at heart, some were hygienic, others were not. We had to manage with what we got as we had no other source of home help.
After we began using home help, Granny continued to stay at my aunt’s place for a couple of years and then moved to my mother’s house for roughly a year and a half with the ‘nurse’.
The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems.
One major problem was that the ‘nurse’ would suddenly leave and go home for reasons best known to herself, or because she had finished her tenure (of max. 5-6 months at a time ). During the absence of the nurse, my aunt (or my mother) had to manage Granny’s care on their own. That was quite a task as Granny was a heavy woman. I lived separately, and though close by, I could only help sometimes with the care. The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems. Granny’s third and youngest daughter, (she was in her fifties) lived in another state; she would come many times to help her sisters with the care especially during the absence of the nurse.
Granny (along with the nurse) was next moved to the city where her third daughter lived. After living for a while with this daughter, Granny was moved to a long-term stay and care facility for older people where she passed away after three years.
Dementia Care Notes: Can you look back at the years between the possible onset of dementia of your grandmother and the point when it was formally diagnosed, and share with us what you think can be done to facilitate early diagnosis?
Vidya: The best possible thing to do is to keep evaluating the person’s health from time to time with proper assessment by qualified doctors and based on that , necessary investigations.
One could then try and control any imbalance of substances for instance-lipids. Or rule out other things like thyroid problems. There can be many things that need to be looked into. A proper control of various parameters could possibly slow the progress of the condition.
There are different causes of dementia as well that need to be evaluated. Perhaps there were other problems also that needed to be addressed in Granny’s case that could have made her better. And who knows, initially it may not have been dementia at all. I can’t be sure because I didn’t get all the parameters checked and I think I should have consulted someone else as well. But now, thinking back, we may have come to the definitive diagnosis too soon, too easily.
Dementia Care Notes: Often, people assume that if there is a doctor in the family, this doctor is responsible for, and will ensure that everything that is needed is done. As you are a doctor, did you experience this expectation?
Vidya: Well, my family did look towards me for suggesting the next, best step, but it was more of a responsibility that I felt on my own rather than it being implied or stated.
Dementia Care Notes: Did your professional background equip you sufficiently for what you needed to do? In what aspects of caregiving did it help? In what aspects was it of no particular advantage?
I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.
Vidya: At that time, I thought that as I was a doctor, I had the advantage in caring for my grandmother. But now looking back, I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.
Because of my being a doctor, I could get direct access to other doctors to discuss Granny’s condition. This was only of limited help as the city where we lived lacked facilities to provide actual care to older persons in her condition.
Dementia Care Notes: As a granddaughter, looking back to those days, can you share a couple of incidents that were frustrating or where you felt inadequate and helpless/ agitated?
Vidya: One such incident I would say was when Granny , not knowing what she was doing messed up the whole room with her poo and everyone was tired and frustrated with the cleaning and the awful smell. It was physically very demanding.
Dementia Care Notes: Can you share a couple of incidents when caregiving was fulfilling and heart-warming?
Vidya: On some occasions when Granny could recognise people around her I felt I could still feel her around with us, and it felt all worth while.
Dementia Care Notes: Your grandmother was finally transitioned to a long-term stay facility. Can you share with us the pros and cons that the family considered for the decision, and what the emotional impact of the decision was? What would you now advice people in a similar situation to think of?
Vidya: The decision to do so wasn’t easy because the whole idea was new to us – that of Granny being taken care of, away from us. It would mean seeing her less often and her being with people she didn’t know and who we hoped would be good to her.
But at the point of time, it had become physically impossible to take care of her in any of her daughters’ houses as they were old and had their own health problems. I lived in my father-in -law’s house so I couldn’t have Granny living with me. Besides, were we doing the best for her anyway? I don’t know. It was only gratifying to see that she was with family.
Each family has to make up their mind as to what and how much they can do and then take their own decision.
Dementia Care Notes: In your caregiving situation, your grandmother was looked after, turn by turn, by all her daughters. Do you have any tips on how sharing the care responsibility between diverse family members can be made smooth for both the patient and the relatives?
Vidya: I would say all three daughters shared in the responsibilities and tried to coordinate as much as possible, especially in the trying weeks when the caregiving nurse had completed her tenure and went back to bring a replacement.
Communication between the family members is the key to a smooth functioning of caregiving.
Dementia Care Notes: Is there anything else you wish to tell other caregivers?
Vidya: Looking back, I think that all of us in our family were not really prepared for the caregiving, though we did our very best. We didn’t know exactly what we were facing and what it could lead to. So we didn’t know what care was needed, and we didn’t plan for it. We fell in the turmoil of getting things done. For example, I didn’t sit back and think–What am I doing? Is this the right thing? Is there anything else? Maybe many other caregivers are in a similar position today, as we were then. Because sometimes when you are in the rut of things you can’t think….
I would advise caregivers to spend some time locating expert professional help to understand what sort of care will be required, and then to plan how they will give the required care.
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.
Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm.[note]
Dementia Care Notes: Can you describe the events that led to your husband’s diagnosis?
Saraswathi: The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.
We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:
Losing balance while walking or climbing stairs.
Fits of anger and shouting.
Insisting on going for “work” (though he had retired long ago).
Insisting on going out for errands that were not needed (such as booking tickets at the railway station).
Insisting on getting updated bank and FD statements every few days, and wanting to go even on Sundays after I told him that the bank was closed.
Going out alone without telling me, such as slipping out of the apartment when I was in the kitchen.
Our family doctor said my husband should not be allowed to drive. I therefore started hiding the car keys. My husband began insisting that the car keys be placed at the same place every day, and would refuse to eat if he couldn’t see the keys. He would shout at me.
I consulted a psychiatrist, who gave no formal diagnosis but started treatment. Eight months later, after it was clear that the medication hadn’t improved my husband’s condition, the psychiatrist recommended that I consult a neurologist. Around this time, my daughter noticed that my husband was leaning to the left while walking and holding his left hand awkwardly.
My husband was able to answer most of the questions asked by the neurologist (those usual what is 100 minus 7 type of questions), and scored seven or eight out of ten. The doctor diagnosed his condition as Parkinson’s, and prescribed medication to be given in addition to the medication already prescribed by the psychiatrist.
We had to go to Mumbai again for some work around then, and so we revisited the doctor we had first consulted. This senior doctor told us, “Stop all medication immediately. When a patient walks into my room I know whether he has Parkinson’s or not. Your husband does not have Parkinson’s”. He told us to continue only one medication, which was for calming my husband.
This became very confusing for us. We therefore consulted doctors in a large, reputed hospital in Bangalore, and they diagnosed my husband’s condition as Parkinsonian dementia. We continued their treatment for eight months. This hospital used a panel of doctors for attending patients, and every visit we would end up meeting a different doctor and have to explain the case again–this new doctor would either prescribe something new, or continue the old medication. I was unhappy with this arrangement as I felt it did not give us continuity. A senior doctor I shared this with advised me to switch to treatment under the local specialist who was closer to my house.
The symptoms my husband was showing at the time he was diagnosed formally were:
Abusing.
Shouting.
Poor balance and frequent falling.
Wandering without telling.
Often, he would fall and be brought back by neighbours.
We are, since then, continuing treatment under care of this specialist.
Dementia Care Notes: What was your reaction to the diagnosis?
Saraswathi: I found it unsettling that doctors came up with different answers, especially the Mumbai doctor’s insistence that this was just ageing and his emphatic way of telling us this was not Parkinson’s.
When the diagnosis was finally clear enough, I was deeply affected.
Till then I had heard of many diseases like hypertension, diabetes, stroke, but I had never heard of dementia. I tried to be strong enough to do what was needed, but when I was told that there was no cure, I felt mentally and physically down.
The doctors gave me information on care for my husband, but did not fully explain what to expect. They did not counsel me on my own stress management or how I could stay healthy as a caregiver. I myself am old and have health problems that have become worse with the amount of work and stress I am facing. I do not know what to do about these.
Dementia Care Notes: What is your husband’s current state?
Saraswathi: My husband has become very weak and lost weight. His ability to understand and do things has deteriorated a lot. He is usually on a wheelchair and needs help to be moved from and to the bed. He needs to be helped for everything. He does not seem to know me or any of the things in the apartment. He does not really know who I am.
It is like he is not there for me. He is like a living doll.
Dementia Care Notes: What is your current arrangement for caring for your husband?
Saraswathi: Though my children do not live in Bangalore, they have set up a “pukka” system to help me care for my husband.
Currently, I use the services of a day attendant, a night attendant, and a dementia day care centre.
The day attendant arrives at eight a.m. in the morning. The night attendant (who has been there since the previous night) leaves after the arrival of this day attendant. The day attendant cleans and bathes my husband, and gives him his breakfast and medication. Around 9:30 am, the vehicle from the dementia day care comes to pick up my husband, and my husband then spends his day at the dementia day care (six days of the week). He is brought back at 4:30 pm by the day care vehicle, and the day attendant attends to him till six, and then leaves.
The night attendant arrives at eight pm and takes over care.
For these two hours, from 6pm to 8pm, I have to handle the caregiving myself. This is extremely difficult because I cannot physically do anything for my husband. For example, I cannot push the wheelchair or lift my husband from the chair to the bed or vice versa. I am very scared of risking anything, because if I get injured, who will take care of me and my husband?
Sometimes I manage to make the day attendant stay for some extra time by paying him “overtime”, but he does not always agree because he has other tasks to do.
I have considered using a full-time attendant, but am hesitant because that would mean cooking for the attendant and that can also be a problem.
Dementia Care Notes: How satisfactory are the services you use?
Saraswathi: The availability of the dementia day care centre is a very big relief, because for those hours the centre’s staff takes over both the work and the responsibility.
At home, I definitely cannot do anything without the attendants. The work involved is very tiring physically, and on the days that the agency sends a female attendant for the night shift, we face a problem because she finds it difficult to lift and move my husband around.
The two hours every evening when there is no attendant are also extremely stressful for me, given my age and frailty.
There is one more problem; our apartment is full of a lot of things. My husband used to be very fond of buying curios and he decorated our post-retirement apartment with them–of course, they mean nothing to him now. Sometimes I find some items missing. I do not know which attendant took them, and have no way to prevent such thefts. That my things are getting stolen and I can do nothing about it frightens me and makes me sad. I find it stressful. I have moved my jewelry and other precious belongings to bank lockers, and use cheques for most payments, but I have to keep cash at home for emergencies, and am scared of theft.
Dementia Care Notes: As you are living alone with your husband, you must also be handling other work and responsibilities?
Saraswathi: Yes, I handle all the work required to manage our house and our finances.
Earlier, when my husband was alert and active, he handled the bank and investment work, and paying bills and all such errands and responsibilities. Now I have learned about all these things. I make the bill payments, get bank passbooks updated, and reconcile statements and do all such work.
I also manage the house, which means doing the shopping and cooking and other house work. I cannot sit back and relax, because I am responsible for everything.
Dementia Care Notes: This is a lot of work to do in addition to caring for your husband. At 78 years, frail, and suffering from medical conditions (diabetes, hypertension), this can be very stressful. You also seem to have lost weight over the last few months. Can you tell us about your emotional state?
Saraswathi: It is true that I have lost weight–over the last six or eight months, I have lost six kilos. My BP and sugar levels are also worse, and I think it is because of all the work and the tension.
While I am managing to do whatever is needed, I feel very tired and am not sure how long I can keep doing everything. My children comfort me and tell me I must take care of myself. They are trying to see how they can take turns to come here so that I can have more days to relax.
Another reason I get stressed is that I am scared that something may happen to me. Suppose I fall down in the flat or fall ill? My husband will not even know anything. My children live in other cities; I have to depend on neighbours to call them. But who will know if something happens to me? How will they know? Yet I am also scared of having a full-time attendant living with me. That will mean cooking for the attendant, and I do not want that work to get added to what I am already doing.
My husband’s state will get worse. I am not able to think clearly about how I will manage that. I do not know what I will do. I hope my children manage to come up with a solution. Right now, I am just somehow continuing to manage my responsibilities.
Thank you for opening your heart to us, Saraswathi!
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below, Varun shares his experiences and thoughts about caregiving.[note]
“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.
Dementia Care Notes: For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?
Varun: His condition affected every sphere of my life.
I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.
My leisure time and social life dipped to zero.
My leisure time and social life dipped to zero. If I felt like having a drink – and I did feel like that often – I drank at home, after everybody had gone to sleep. Interactions with friends happened through my laptop. Happiness moved online. I decided not to have any romantic relationships in my life for many reasons. One, I wasn’t in the frame of mind to actually contemplate romance. Two, I didn’t want to complicate my life further. Three, I knew that a special new person would draw me away from my immediate responsibilities.
The only positive development, if I could call it that, was that my father’s condition inspired me to write a short story which won an award.
Dementia Care Notes: Can you share a few challenging situations you faced while caring for your father? Can you tell us how you handled them?
Varun: Almost all the day-to-day problems we face with my father revolve around smoking. Around two years ago, I and my mother decided to curb his habit and we’re still facing the consequences of that decision.
Ever since we rationed his cigarettes – to around 5 a day – he began stealing from home to fund his habit. No matter how well we hid our wallets and purses, he dug them out. We soon realised that in this one aspect – his desire to smoke – his resourcefulness exceeded that of a “normal” person. On those days when he didn’t find any money, he began buying packets from the local shopkeeper on loan. Of course, once the nicotine entered his bloodstream, he had no recollection whatsoever of having asked for the loan. On one occasion, he willingly accompanied me to the shop and blasted the shopkeeper for lying through his teeth. ‘Everybody’s a crook,’ he thundered. Of course, the next evening, he was back at the shop, begging for cigarettes.
Once the loan-route was sealed off, he began scanning the roads for cigarette butts. If he found a butt that could offer a single drag, he’d pick it up – no matter how filthy it was – and smoke it. This new development worried us no end. We could somehow endure the social stigma of such behavior, but what if he were to catch an infection from a cigarette butt?
We temporarily reverted to his earlier quota of cigarettes, but he did not give up the practice of picking up butts from the road. This has now become an enduring ritual and we have no idea how to deal with it.
Now, he’s acutely aware of when he will be given a cigarette – like, after the morning coffee, after lunch, after the evening tea and then after dinner. So meals and beverages have become harbingers of nicotine for him. He wants to rush through them so that he can get his cigarette. Even the slightest delay in placing a cigarette in his hands provokes extreme anger. At all other times, he’s meek as a kitten.
Our only hope is that memory – which has been reduced to less than a dozen sketchy details in his mind – one day refuses to remind him that he’s a smoker.
From the above account, you may have also realised that he has become schizophrenic. One moment, his mind is plotting its way to a cigarette and the very next, he believes himself to be innocent as a lamb. At such times, he accuses us of being callous. ‘Nobody understands me,’ he cries.
He’s almost always anxious and, as is common, he keeps repeating his questions ad nauseum. When he’s visiting his sister, he assumes her to be his daughter (my sister) and keeps fretting that his grandchildren have not returned home. All we can do is calmly tell him that his grandchildren are safe and happy in another city and he has no reason to worry.
Dementia Care Notes: Often, spouses find it difficult to move from a partner role to a carer role. Can you share how your mother handled this transition? How do you think a child can support a parent who is caregiving the other parent? Any advice, looking back?
Varun: My mother is like the Rock of Gibraltar. She’s a natural caregiver. Having spent her youth in a joint family that expected her to be the dutiful daughter-in-law, she’s used to taking care of the smallest needs of a large group of people. So she barely flinched during the transition from the role of a partner to that of a caregiver.
She was, of course, shaken by the first diagnosis of dementia. During that time, and later during particularly stressful times, I just offered her a shoulder to cry on. She didn’t expect much more than that. Other than that, I interfaced with doctors and informed her of time-tested techniques from the medical world. Whenever she resisted the proper caregiving technique – because it went against her instincts – I persisted with my talks till she accepted the technique. For instance, she became quite defensive of my father when someone wasn’t empathetic enough to his condition. Alternatively, she’d try to reason with my father to behave more rationally. In such times, I had to ask her to let him be. People suffering from dementia do not understand logic. But they do understand a hug, a squeeze of the hand, a caress. My father’s especially fond of hugs. He doesn’t care who gives it or why it is being given. He responds very positively to that form of affection. So we try and give that to him. As much as possible.
I think that in today’s day and age, the child can help the parent the most by:
Being there, as much as possible.
Reassuring her that society’s perceptions does not matter two hoots. My generation finds it easier to accept this premise and I can, therefore, sell the idea to my mother.
Exploit the power of the internet to keep her informed.
Remind her that she has the resilience required to undertake this super challenge.
If I were offered the twisted choice – as to which of my parents should be affected by this condition – I’d choose my father. Because women have an infinitely larger capacity to handle pain than men. So my mother can, all said and done, take much better care of my father than vice-versa.
Dementia Care Notes: Were there things you considered or did to improve your father’s quality of life? Did it seem possible? Any tips?
Varun: My father was an ‘extra-strong’ personality in his prime. And his assertive attitude survived the advent of the disease. I realised very soon that there was no way he was going to turn obedient. We had to accept his wishes, whether we liked it or not. All we could do was to make sure that he wouldn’t harm himself (he isn’t the kind of person who’d harm others).
So these were the decisions I took:
He insisted on going to the temple every morning, unsupervised. We knew it was to scout for cigarette butts on the road. And to dip into the priest’s plate for a coin or two. But if he was denied this outing, he became furious. So I decided that he would visit the temple, come what may. My mother, when she visited the temple, dropped enough coins on the plate to compensate for the priest”s and the Lord’s loss. Once he returned from the temple, he was calm. The rest of the morning and afternoon passed like a hazy summery dream.
In the evening, he’d again want to go to the park for a brisk walk – and I mean brisk. Even today, he sets a Gandhian pace for the rest of us. We were reassured by the fact that the park was quite close to home. And the locality we lived in had become familiar with him and his ways. Like the kind shopkeeper, who never took offence to his outbursts, the people in the neighbourhood would, we felt, return him safe to our home in case he got lost. But he never did. In fact, he self-regulated his walks. During the first year, he would walk into distant neighbourhoods, sometimes through thick traffic. But as soon as he realised that he was losing his bearings, he restricted his walks to shorter distances. Soon, his walks began and ended in the local park. This self-regulation, I think, was put in place by his fear of getting lost. I, for one, did not want him to vegetate at home and lose his physical health – which, touchwood, is still rosy, thanks to his penchant for walking. So I decided that there would be no restrictions on his walking and I think it’s one of the best decisions we’ve taken.
Upon a doctor’s advice, I prepared a photo album for him, tagging each photo with detailed annotations and dates. We kept this album within his reach. He’d open it every day and pore through it, as if he were seeing it for the first time.
I took him and my mother for a workshop held by my city’s ARDSI chapter, a magnificent organization that helps families like mine. At that workshop, my mother listened to experts and other caregivers. Knowing that we’re not alone in this situation helped her a lot. She also got plenty of practical tips on how to handle aggression, repetitive questions etc.
My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.
We consulted various doctors regarding his medication. I had a feeling that Donep (and other brand names of the same compound) was not really helping him. If anything, it was making him more aggressive. Some doctors insisted that better results would be achieved over time. But even after years, the medicine achieved nothing productive. I consulted another doctor and with her blessings, stopped Donep on a temporary basis. We found that his mood actually improved. He was a little more lucid and a little less worked up. I suppose these drugs do have different effects on different people. Some other victim’s reaction to the withdrawal of Donep might be entirely different. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.
Dementia Care Notes: Your mother finally moved along with your father to their village. What sort of pros and cons were considered while making this move?
Varun: Well, my mother did not allow me to consider pros and cons. She was quite convinced about the move. I wasn’t. So I requested the professionals from my city’s ARDSI chapter to pay a home visit and talk to her. They did and realised that she had made up her mind. So they advised her on caregiving and also to report any discrepancy in my father’s behavior at the earliest.
There are many reasons behind my mother’s relocation. I can speculate on and/or verify a few of them:
She wants to be closer to the temples she loves to visit.
She wants me to rethink my own life and, perhaps, find myself a life partner. She’s come to believe that this cannot happen with them over here.
She thinks that my aunt – who lives a stone’s throw away from her new residence – will offer enough emotional and physical support in case of an emergency.
She feels that this is her cross to bear. And hers alone.
I have never been convinced about this move. A room in my home remains empty, awaiting their return. For the time being, I had to restrict myself to a few basic parameters:
Their new residence is a condo which has excellent security arrangements.
Around 70% of the residents of the condo are retired folks who offer great company to my mother.
The locality is small and cosy. Everybody knows everybody. Even auto rickshaw drivers will take you home without asking for the address. It’s that easy to get that familiar with the others. It’s the kind of place that will accept my father’s idiosyncrasies and even celebrate them!
For now, that place is their world. And I’ve made my peace with it.
Dementia Care Notes: Are there any problems being faced because your parents are now in a village? How are these being handled?
Varun: As of now, there are no logistical and day-to-day problems. The locality has accepted my parents and there’s home delivery for everything.
But my parents are currently travelling in Gujarat where my father has, on one occasion, displayed mild violence because he was denied a cigarette on time. This has made me anxious for my mother. I wonder whether she should be allowed to stay all alone with my father. What if he becomes more aggressive? So my plan is to reassess their situation once they return to our hometown and, maybe, veto my mother’s decision to stay on their own.
I fear that, at the moment, my mother’s desires are in opposition with my father’s. My mother wants and deserves a break every now and then. From time immemorial, her idea of a break has been to travel to a close relative’s home. She wants to continue this practice. But, of course, every new place adds a dimension of disorientation to my father’s mind. My mother is still young and she certainly must lead as full a life as possible. Knowing this, I’d like to explore day care or fulltime care options for my father. But my mother is quite averse to this suggestion because she feels that my father will collapse in her absence. She has circumstantial evidence to back this claim. If he doesn’t have her in his sight for more than a few minutes, he panics. So my mother is even more sceptical about allowing others to take care of my father.
A qualified doctor friend recently told me that in these cases, the caregiver becomes as dependent on the victim as vice-versa. The caregiver begins to define her own life on the victim’s condition. Without the victim’s dependence, she herself is lost. So I must watch out for this co-dependence angle.
…my mother’s state of mind must remain the most important consideration in whatever decision I take.
Having said that, I know that my mother’s state of mind must remain the most important consideration in whatever decision I take. I cannot unilaterally take a decision based on rational thought. I must make sure that she’s onboard with the decision, whatever that is.
In all these situations, I become painfully aware that I’m, after all, a secondary or tertiary caregiver. The brunt of the ailment is borne and best understood by the primary caregiver alone. I cannot be the referee in this tug-of-war against Alzheimer’s.
Dementia Care Notes: Have you and your family considered how you will handle care when your father deteriorates? Can you share some criteria/ decisions on this?
Varun: I’m quite clear that, when my father is physically incapacitated, we must have a fulltime nurse to assist my mother. Perhaps the nurse will be required before that stage. I’m mentally preparing myself for adult diapers, bedpans, a special bed, bedsores, the smell of disinfectant in the air and the constant anxiety all these things introduce to a household.
All I can do is prepare financially for this era. I’m utilising my father’s absence to undertake lucrative assignments that will fund these times.
It’s amazing how Alzheimer’s teaches one to walk the invisible line between emotions and pragmatism.
Ideally, I’d like my mother to rediscover the joy of life at her age. Maybe explore hitherto-unexplored opportunities. She doesn’t have to be chained to his bed till he passes on. I fear that, when my father does pass on, she’d be left rudderless. So shouldn’t she find parallel meanings in life right now?
…but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.
But, as I said before, I cannot make these decisions on her behalf. I’ll continue to talk to her about these things, but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.
Dementia Care Notes: Overall, based on what you have seen so far, is there something you would like to share with caregivers who are just starting their caregiving journey?
Varun: To the primary caregivers, I’d say: don’t judge your loved one who’s suffering untold inner turmoil. Let him or her be. You’ll rue the fact that he is a shell of the splendid human being he once was. All the good traits will vaporise and all the vices will amplify. Don’t remember this shell. Remember the past. Remember that he was a great husband/father (or mother/wife).
To the children of the primary caregivers, I’d say: put aside your otherwise perfect life when you address this condition. If your spouse is not empathetic about your suffering parents, then find a way to balance the present and the past. Give your parents a life they deserve while not compromising the future of your marriage or your kids. The modern spouse cannot tolerate loss of control over the TV remote. So please don’t get worked up over his or her inability to tolerate the loss of peace. We live in a transitioning society. It’s up to us find the middle path. Our children may or may not turn up at our funerals. But we must delay the funerals of our parents. More than that, we must make their last mile as happy and memorable as we can.
Thank you, Varun.
Eshwar Sundaresan, writer, talks openly about his father’s dementia and about caregiving, and wishes to acknowledge his identity as “Varun” above. In September 2013, Eshwar wrote a detailed blog entry sharing more related experiences and thoughts (click here: They understand only love Opens in new window); this blog entry helps us appreciate how he has integrated and grown because of his father’s dementia and the related caregiving environment in the three years since the above interview.
Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.
Sarla (name changed) lives in the USA with her husband. Her mother-in-law, who lived in India, passed away after suffering from Alzheimer’s for some years. In the detailed account below, Sarla describes the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts came to play in the situation. We see the whole gamut of the experience–the initial denial, the spouse hiding the loved one’s problems because he wanted to remain independent and not bother his children, the problems of caring from overseas, the lack of coordination and trust, the clashes and criticisms because of differing perspectives over what care constituted, and what the end-of-life decisions should be.[note]
Sarla gives her conclusions at the end. We, as readers, may draw our own lessons on what we can do in a similar setup to avoid the problems faced by Sarla’s family while caring for the ailing mother-in-law.
Coping with Alzheimer’s from 10000 miles away
By Sarla (name changed)
You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.
What is it like to monitor a serious sickness of a loved one from 10000 miles away? You get a call early morning telling you of a problem. You stay awake all night (being 12.5 hrs behind) waiting for updates. You try to hide the panic you feel (everything seems so much more scary because you are not physically there) and stay calm for the parent who is handling the crisis. You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.
This story is about my mother-in-law and her Alzheimer’s Disease, about her care, and how our family of three siblings, two overseas and one in India, was unable to coordinate her care cordially for her sake. All the players thought they were doing the best at that time. It is about choices we all made in our lives and the consequences of those choices. It is about Amma and Papa’s indomitable spirit in the face of overwhelming health problems. And how Amma and Papa suffered, and the situation shook up and shattered the fragile balance of our family.
My mother-in-law (Amma) was an energetic vital person with a love of life, family and friends. When she got breast cancer, she fought it with her typical aplomb. Doctors were amazed at her progress. When the cancer came back in the bone, she fought it again. Being a woman of a generation where she was more used to doing things for others than herself, she felt guilty at the money that was being spent on her treatment. But she retained her fighting spirit. She loved perfumes and on one of my visits informed me that she had given all her perfumes away as she could no longer smell. The doctors did not have an answer to that.
The first sign of her behavior problems came in Aug 2004.
But before I continue, let me explain the composition of our family. My parents-in-law (Amma and Papa) have three children. My husband is the eldest son; there is another son (my brother-in-law, Bhaiyya, who is the youngest) and one daughter (my sister-in-law, Didi, who is the oldest). Both the sons live in USA. Didi lives in Delhi. In 2004, when the problems were first noticed, Amma was visiting Didi. Bhaiyya was in India for a visit, which made it a packed house with various spouses and children. Amma got disoriented about where she was. Bhaiyya took her to a doctor, who did an MRI, found some ‘anomalies’ and recommended some medicines, saying it would help her memory. Amma refused to have them. My husband, visited soon after and he, too, was not able to convince her to take the medicines.
But Papa insisted that she was mostly ok and this was just aging. He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.
When we would call Papa from the USA, he would tell us that Amma was forgetting more. He told me this when I visited them in Delhi in Sep 2005. I found Amma to be a little quieter. She showed some signs of memory loss (asked where Didi was and then recalled that she lived in another house). But Papa insisted that she was mostly ok and this was just aging. He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry. Amma was a fun loving person, too. The three of us drove to India gate and had ice cream. It was, looking back, the last fun thing we did together. My husband visited in Dec 2005 and they celebrated the parents wedding anniversary with Didi’s family. Amma displayed most of her spirit and dry wit. In spite of the fun they were having, my husband felt that Papa was trying to tell him something, but could not draw it out of him. When my husband returned to the USA, he told me, ‘I guess Amma is having some memory loss but they are hanging in there’.
In those days, (2005) Amma and Papa were living by themselves in an apartment in East Delhi. Amma was 81 and Papa was 90. They were tough, independent people. All through Amma’s cancer treatment they handled the doctor visits to a hospital over 20 km away without help. This was not a small feat in Delhi traffic.
Before I describe how Amma’s condition progressed, I’d like to digress a bit to explain the sibling relationships here, because these created unfortunate dynamics later and affected Amma’s care.
Didi (my husband’s sister) had a stressful life trying to earn a living for herself and her family by giving tuitions. My husband and I had helped her financially for many years, including financing her children’s education. This had strained our relationship and resentment was building up towards ‘the rich brother and sister-in-law’ who had nothing to worry about. In their mind we had a perfect life in the US – quite luxurious, and no financial responsibility as we did not have children.
Bhaiyya (my husband’s brother) lived in the US. My husband had put him through graduate school in the US, and supported his family financially for several years. So there was the suppressed resentment from his side also towards us.
Around 2005, when Amma and Papa were living separately, and Amma had started showing some signs of disorientation, their face-to-face interactions with the three children were limited.
Didi was living in Dwarka, the other end of Delhi. She visited Amma and Papa about once a month and spent half a day with them. Bhaiyya would call Amma and Papa about once a week and talk for 15 minutes. He visited India once in six years because it was too expensive to travel with a wife and children.
We talked to Amma and Papa at least 3 to 4 times a week. Papa would stay with the same story about Amma. When we tried talking to Didi to find out more, she told us they were ‘fine’. My husband tried telling her that she should take Amma to a doctor for a checkup. She ignored it and continued with the status quo.
The turning point came in May 2006, when Didi went to an extended family function and saw Amma dressed in a non matching salwar kameez. This made her take notice as Amma was ‘looking bad’ in front of so many other relatives. She talked to Papa and the truth started to emerge. In the last few months, Amma had been unable to take a bath herself. She had no awareness of personal hygiene and would go out with uncombed hair. Papa finally told us that she would wake up in the middle of the night and get violent with him. All these symptoms were disturbing and completely new to us – we did not know what was happening to Amma.
What followed was a traumatic time for the entire family. It was difficult to persuade Amma to go to a doctor – when she was taken to VIMHANS on a pretext, her first reaction was accusing ‘You people have brought me to a mental hospital’. She was diagnosed with having Alzheimer’s Disease, something we probably knew at the back of our minds, something my husband had been saying for some time, and I did not want to believe. Various medications were prescribed for this, the most notable one being Aricept.
It was quite clear that Amma and Papa could not live alone any more. We managed to convince a very reluctant Papa to move to Dwarka to be close to Didi. This happened in Dec 2006. He still wanted to live independently, just be in a flat close by.
The move, though unavoidable, made Amma’s condition deteriorate more rapidly. She was apprehensive about changing her home. By the time she got to the new place, she was unaware of her new surroundings. She stopped recognizing family members though she had some spurts of recognition. It seemed like the change in environment had impacted her negatively. There was a paid caregiver assigned to taking care of her and preparing the food. Papa had taken over supervising the caregiver and managing the house. Didi visited and checked on them when she could. We, along with US based Bhaiyya, were paying the rent for the house, and for all the household and medical expenses.
I visited Delhi in Apr 2007. It was a shock to see Amma even though I had been adequately warned on the phone. Though she had lost the power of recognition, she could be very animated if someone talked to her. She lived in her own reality, an extension of the life she had led. It showed me that if a person in this condition could be kept engaged, their quality of life could be better. Papa was running ragged but as tough as he could be. He insisted on taking care of Amma, and giving her the medicines himself, something we were no longer confident he could do. We had already had an earlier episode of him giving her the wrong dosage. This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other. They were living their destiny together.
This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other. They were living their destiny together.
In early May 2007, the paid caregiver left Amma and Papa alone in the house and took off for hours. Papa tried to help Amma out of bed and they both fell. As a result of the stress, he had a severe asthmatic attack. He was always very careful about his health, but his lungs had been getting weaker in the recent years. They called Didi, who rushed them both to the ICU. And we got a call, one we would not forget for a long time. My husband was coincidentally leaving for India in a day (looking back maybe it was fate?). Soon after he got there, Papa passed away, no longer having the energy to keep going. He was 92 and had stoically taken care of his wife during her illnesses for over six years.
Until now my husband, Didi, and Bhaiyya had been talking – any resentment between the siblings was well hidden. Things took a dramatic turn after Papa’s death. It became about control and stress about assets, though there were not that many assets to fight about. Papa’s will transferred all assets to Amma, who was unable to act on her behalf. Their bank accounts did not have any nominees, so were essentially frozen. Being overseas it was difficult for us to figure out how to resolve this, and Didi had no interest in doing so. I think she knew we would continue to bear the financial responsibility of taking care of Amma and eventually their assets would go to her and her two siblings, the direct heirs. This way her share would not be depleted. She also probably thought that her brothers would relinquish their share to her as they ‘would not need it’, which probably would have been true had the relationships not deteriorated. It pains me to say this as I write this, but unfortunately we had enough reasons to come to this conclusion.
But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.
Amma had a bigger setback after the fall. She lost mobility and now had to be moved to stay with Didi. Didi had never treated her very well and this was the last thing Amma would have wanted. But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away. My husband agonized about it a lot. I tried to console myself with the fact that at least she was not aware of what was happening to her. But of course she was, at some level. A few days after her fall, Amma contracted a urinary infection, developed a potassium imbalance and had to be hospitalized. After being in critical condition, she recovered somewhat and returned home. But this time she was unable to swallow and had a feeding tube inserted in her. All this happened in the space of two weeks after Papa passed away.
Even the doctors started saying that her condition was terminal and using a feeding tube was unnecessarily prolonging her life. Didi felt that she could not bear to remove it. To be honest, even today I cannot begin to imagine what it would feel like to have to make that decision. I can just quote something a friend of mine, who initially worked in nursing in the US, told me – ‘at some point it is not about what you feel and how it would affect you, it is about not making them unnecessarily suffer if there really is no hope’. As we saw, it was easier said than done.
In the United States, a lot has been written and discussed about end of life decisions, living wills etc. I don’t think it is that common in India. Amma did not have one but we knew her spirit – she would never have wanted to prolong her life like this. My husband felt very strongly about this – he also reiterated that Amma had told him in one of her coherent states (before the fall) that she did not want to live any more. Since there was no written statement, the jury will remain out as to her exact wishes. One could only surmise them.
The relationship of my husband with his siblings went progressively downhill after this. We were the ‘evil ones’ who did not want Amma to live. In Jan 2008 my husband visited India to meet Amma. I visited a couple of months later, in March 2008–seeing Amma in that condition was something I would not wish on anyone. My husband made a trip again in early May 2008 by which time her condition was worse. We also felt Didi was spending money with complete disregard to budgeting, as it was not her money. Didi accused my husband of being unpleasant and interfering. It did not seem possible to have any meeting ground, and the brother and sister were barely on speaking terms.
Amma remained on a feeding tube for one year. It was removed by Didi three weeks before she finally passed away, at the end of May 2008. It was an agonizing time for my husband and I, but we could not find a better answer. All the siblings had to agree before something drastic like removing the tube could be done. We got news of her passing away through a text message – neither Bhaiyya nor Didi had even bothered to call us.
Today, almost three years later, my husband, his sister, and his brother, are still not talking. The distribution of Amma and Papa’s limited assets has still not happened, as we deal with processing of a succession certificate in Indian courts. All we want to do now is honor their memory. Without going into details about this, we feel betrayed by the way Didi handled this affair.
What are the lessons I take away from this? Would we have done anything differently? Here are some of my thoughts:
If you have very independent parents, as they age, maintaining their independence versus having them move in with you because they need help, becomes a fine line. By the time my in- laws desperately needed help, we could not get them their preferred kind of help, and they ended up depending on Didi. It was too late to have them come live with us.
I am aware that when parents move in with one of their children at a younger age, it poses its own challenges – I hear that from friends. The younger people feel constrained and in some cases find the older people interfering. The older people have their own opinions about how the younger ones lead their lives. Some old people are not very nice to their children and daughters-in-law etc. It is not always possible for everyone to get along. But I would hope that most younger people would soften, as they see their parents get more vulnerable as they age, and then want to take care of them. I was a strong proponent of my ‘independence’ when I was younger. Today I feel it would be a small price to pay if I could make the later years of the life of my own parents better. I have also observed from watching friends and relatives who have taken care of aging parents while they live with them, that this ends up being the best thing for the parent though it is of course often very hard for the younger people who are caregivers.
These days, at least in the USA, we have more counseling help available on how to handle an Alzheimer’s/dementia patient. But when that patient is living with their spouse, controlling the behavior of the spouse becomes equally difficult. They are the same age group with less control over their responses and reflexes. There are no easy answers to this.
All personal paid care givers, nursing attendants require tight supervision. Having them know that they are accountable to a younger person may help somewhat. Without assigning blame, the neglect displayed by the paid caregiver proved to be a costly one for us. She felt she had complete control of the house with two old people in it – there was not enough accountability.
In fact I would say that this whole area of hired caregivers needs to be addressed (a topic for another write-up) – we could have personal online reviews of agencies to start with, for example.
We have to find ways to have parents communicate all their problems clearly early so help can be obtained. It is very generous of them to not want to bother their children, but they have to be persuaded that letting them know everything is the right thing. I find that older people get even more diffident in their communication. In my in-laws’ case, I think Amma and Papa might have been comfortable taking help from my husband and me, but we were far away, so they did not want to trouble us. They were not so comfortable with their daughter, and their pride and self-respect prevented them from asking Didi for help except in desperate situations. They were hurt by her indifference and had become sensitive.
As loved ones start aging (I use that term because this could happen to anyone, not only old parents) we need to remain observant about changes in behavior and health conditions. That may help in detecting problems early. In Amma’s case, I believe all of us were in denial for some time about an upcoming serious problem. It is too scary to confront, but somehow one has to find a way to persuade the person going through it, that it will help them. In her case, given the treatments available today, treatment a year earlier may not have helped the inevitable progression. But in the future there may be other options. All the symptoms Amma had were new to us and we learnt as we went along. We started educating ourselves as we went through it. Years after Amma reported losing her sense of smell, I read an article describing the fact that this could be an early sign of Alzheimer’s. It seems like new things are being discovered about this, which is encouraging.
Above, I have included some background about sibling dynamics to analyze for myself what caused the relationship to deteriorate to a point of no return. Maybe some things are very specific to our family situation. Though we were not able to, I believe one should try one’s best to keep sibling relationships at a workable level.
End of life decisions, however tough, should be discussed at a time when it is not emotional, which is as early as possible.
End of life decisions, however tough, should be discussed at a time when it is not emotional, which is as early as possible. Make a living will by the time you are 50. Ideally don’t let what happened to Amma in the last year of her life happen to a loved one.
In conclusion I would like to dedicate this to Amma and Papa. Their indomitable fighting spirit and courage through the ordeals will always be an inspiration to us.
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.