Early warnings, diagnosis, medication, side-effects, an elderly father as caregiver: a daughter talks of her mother’s dementia

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Mala (name changed) has a mother suffering from Alzheimer’s Disease, something the family found out only after years of watching her slowly-increasing forgetfulness. Care is being given by Mala’s father, who refuses help. In this interview, Mala goes down memory lane to describe the early symptoms, the diagnosis and treatment, the family’s coordination for the care, and Mala’s own hope and guilt.[note]

Dementia Care Notes: Please share something about your family.

Mala: We are three siblings; I have two elder brothers and I am the youngest. Our family is an upper middle class family, and we are all educated and pursuing good careers. Daddy retired over a decade ago, and Mummy was a home maker. All of us currently live in the same city; my eldest brother and his family lives at some distance, my other brother and his family live next door to my parents, and I live with my in-laws just a few minutes of walking distance.

Daddy (now almost 80 years old) is my mother’s caregiver, and while we all try to support him in various ways, he insists he does not need more help right now, and will ask for help if he needs it.

Dementia Care Notes: Tell us about your mother before the symptoms started.

Mala: Mummy was what we would probably call an ideal homemaker. Though a graduate who had worked for some years, she was happy to leave her job and switch to full-time home making. My father, a quiet man, worked at his job, earning money. Mummy was the one who was always there for us, her children, when we were younger. She loved to cook for us. She was very social, and was prominent within our community for her participation in various group activities. She loved oil painting, and also helped with managing the society club administration, and was always volunteering to help in this thing or that.

Dementia Care Notes: Please describe when and how she started changing.

Mala: I think the changes happened very slowly, or maybe we just didn’t pay enough importance to them. After Daddy retired, Mummy was still a very socially active person, meeting relatives, attending functions, arranging neighborhood bhajans, and so on. My brothers had moved out for their studies and jobs.

I think I first noticed Mummy’s forgetfulness around the time my marriage was fixed. We had recently moved to an apartment my parents had just bought, and Mummy would often keep things at strange places and the kitchen arrangement was all mixed up, not the way an enthusiastic cook would handle it. I told myself it was just because it was a new apartment, but it still felt a bit odd.

In the six months between my engagement and marriage, I saw Mummy behave in many strange ways. She seemed very disinterested in all the hustle and bustle of purchases for the wedding. She would tag along for the shopping as if not really interested, and even when we traveled to our home town to place the order for the jewelry, she did not seem excited at this holiday and meeting our relatives in our home town. She had been so social earlier that this detachment felt odd. My Mausi also commented on this indifference, but we all felt that Mummy may be feeling sad because the only child left at home (my brothers had already moved out) would also be leaving home soon. I thought it was some sort of “empty nest” syndrome. I had to keep coaxing Mummy to buy a new saree for herself so that she looked pretty during the wedding festivities.

During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange. It was like she was just doing things in a disoriented way, not happy about it.

During the ceremony, she walked off in a disoriented way when the kanyadaan was taking place, which felt very strange. It was like she was just doing things in a disoriented way, not happy about it.

I was especially surprised because Mummy had been so happy and active for my brother’s marriage, and even for a cousin’s marriage a few years ago, but I assumed that she was just very sad and would get over it, and besides, I was excited at entering a new phase of my own new life.

After my marriage, when I would visit my parents, I saw that Mummy had lost all interest in cooking. She had stopped cooking special dishes. Relatives told me she was quiet and inattentive. I would visit as often as I could, but I was also busy with my new life and my in-laws and career and all that. I didn’t think anything was seriously wrong with her, just that she was taking a long time adjusting to the home being empty.

I began registering that something was wrong around the time I went to my parents’ home for the delivery of my first child. It became obvious then that Mummy had really changed. For one, she seemed very scared of holding the child, and would just not pick him up. She only helped me by continuing to do the cooking, but she kept making mistakes even in that. Rice would not be soaked long enough and be served undercooked; daal would be put on the table without the seasoning. If Daddy pointed out a mistake, she would calmly say she forgot and correct the problem, but she always looked preoccupied and distant. Daddy would sometimes get irritated, thinking she was being careless or doing things wrong on purpose.

I had no idea of what was happening. I had never lived with any grandparents, and did not know whether this was the normal way that people aged..

I had no idea of what was happening. I had never lived with any grandparents, and did not know whether this was the normal way that people aged, but I thought it might be. As I was trying to handle my child, I would expect Mummy to help, for example, to set out the bath water and oil and soap. I would be surprised and irritated when she could not follow even simple instructions. Looking back, I can see that what I considered simple instructions were not actually all that simple. I would sometimes snap at her, but she would not get upset even if I scolded her.

Sometimes, as I found the child-rearing tiring, I would wonder how Mummy had managed bringing up three children, and would be awed at what mothers do for their children, and also feel very abashed about not having valued her when I was younger.

The way I saw it was, she was getting older, and ageing seemed to create more problems than what I had expected.

The next few years were very busy for me. I don’t remember too much of how she changed over those years. I would visit, of course, but I was engrossed with my family, and Mummy seemed silent. All Daddy ever said was that she was getting more and more forgetful, but otherwise things were okay.

Dementia Care Notes: How did you realize that your mother had a problem that needed investigation?

Mala: It was actually by chance. I happened to attend a workshop on dementia as part of some work, and as the doctor conducting the workshop kept explaining each of the warning signs, I felt my heart sink as I found myself thinking: Mummy has that symptom. Sitting there, finding that Mummy was showing so many of the symptoms being described, I started suspecting that Mummy could be a dementia patient.

My emotional reaction was one of guilt for not having realized this earlier. Then, as the doctors explained about “reversible” dementia, I felt hope. Maybe Mummy’s problems were a reversible form, and could be solved.

The challenge was how to convince Daddy and my brothers about the need for consulting doctors. You see, none of us had seen her problems as a “mental problem”, just as growing forgetfulness.

The challenge was how to convince Daddy and my brothers about the need for consulting doctors. You see, none of us had seen her problems as a “mental problem”, just as growing forgetfulness. Her behavior did not have that agitation or rage that we associate with “mental problems.” And the idea of consulting a psychiatrist was very alien to us all. Words like “psychological problems”, “counseling”, “mental issues”, were all frightening.

I sat down with Daddy and my brothers to discuss more on what Mummy’s symptoms were. As we talked, I heard of more incidents that convinced me that Mummy may be having dementia, though I continued to hope that it would be the reversible type.

For example, Daddy told me how Mummy, on some days, said she had no children, and on some days, claimed she had only one child, while sometimes she would correctly state that she had three children. And my sister-in-law described numerous occasions when Mummy had seemed very disoriented, wandering about the two apartments (my parents’ apartment and my brother’s apartment), not at all sure what she was doing or where she was.

We all finally decided to consult a doctor.

Dementia Care Notes: Please describe how you got a diagnosis and started treatment.

Mala: Even after we decided to consult a doctor, we had no idea where we should go. We finally opted for a well-known nursing home in our locality, visiting as normal out-patients, and were directed to a junior doctor. We had no idea what to expect.

Mummy was quite bewildered about why we were visiting a doctor. I remember her asking me, “Why have you brought me here?” and when I said it was because there may be some medicine for her forgetfulness, she smiled and said there was nothing wrong with her. All through the visit, as the doctor talked to her, she was over-cheerful.

He (the doctor) gave us no explanation, and spent no time explaining the side-effects or anything else about the medication.

The doctor did not order any blood tests or scan, and directly put her on some medications that I now recognize as medications used in Alzheimer’s Disease. He gave us no explanation, and spent no time explaining the side-effects or anything else about the medication.

I feel very let down when I think of how the doctor dealt with us. He behaved as if we were the sort of people who will not be satisfied unless given a medicine, and as if we could not understand anything. He did not even try to explain or investigate more.

Dementia Care Notes: How did your mother respond to the medicines?

Mala: Mummy’s state deteriorated after the medicines were started.

Earlier, Mummy was forgetful and disoriented and uninterested. But after starting the medicines, She became even more forgetful. Her ability to recognize people went down, too, and she started calling my father “old man” and refused to share her bedroom with him.

The worst part was that her nature changed. She became irritable and agitated. Though not outright violent, she was clearly feeling very different. She often behaved like a college girl, and would be very distressed when she saw her gray hair, which she thought was really premature graying.

When we reported the problem to the doctor, he reduced the dose. After a while, on our insistence, he agreed to do more investigation. That was when they did various tests, including an MRI which, they claimed, confirmed the diagnosis of Alzheimer’s. I had been hoping even at that point that Mummy’s condition would be a reversible one.

The investigation done at this time included a neuro-assessment, and I was present for it.

When the doctor asked Mummy if she knew who I was, she said, “Of course. She is my sister.” I was shaken up. Mummy knew my name; I had no suspicion that she thought I was her sister and not daughter. I had not thought of testing her and asking her who she thought I was. Later, my brother told me that Mummy often did not know who was who, and called most people by the name of my sister-in-law.

Dementia Care Notes: How did your mother’s condition change with the treatment? How was care given?

Mala: The doctors told us that medication helps and should not be discontinued, though they adjusted the dose. Mummy’s hallucinations continued. She would seem to see things that weren’t there. Her behavior was increasingly strange. She would talk to herself in the mirror, and also try to walk out of the apartment, insisting she wanted to return to her father’s place. All this was even more problematic to deal with, especially because Daddy was having health problems of his own by now, and he was less mobile.

Daddy became upset and irritated more often then. As he had problems walking, he would ask Mummy to fetch a plate and she would fetch something totally different, and he would think she was troubling him deliberately. Though I had talked extensively about dementia to him, he was unable to accept that her strange behavior was because of that.

We tried to get a full-time maid for Mummy, but Daddy refused. He did not want someone hanging around the apartment all day. He did agree to employ someone for the cooking, and so the maid who was employed for cleaning the vessels was upgraded to “cook” status, and he trained her to his satisfaction. Food at home was, by now, very simple fare.

Mummy’s altered personality was very stressful for Daddy. I remember he got agitated a few times and said that we should stop the medication, or place her in an old age home and that he could not handle her any more.

It was a difficult time for all of us. My eldest brother, who lived at some distance, was supporting my parents financially. My second brother, my parents’ next door neighbor, was always available for emergencies. I was unable to help, as I had also got my own duties to my in-laws and a young child, but I tried to be there emotionally for “quality input”. My father, although tired and frustrated, still refused to take help. There were many episodes that were very challenging and worrying for us all.

Dementia Care Notes: Please give some examples of problems you faced.

Mala: Once, Mummy wandered off in the morning. We just could not find her. We alerted the police and then started looking. We were very tense, but we tried to think clearly. Mummy was fond of visiting the temple, and too scared to cross the main road. We therefore started searching in the various small side-roads. After several hours, we finally found her sitting in a park, watching children play.

When Mummy saw me, she smiled. “Oh, you have come, let us go home,” she said, as if this was all very normal.

After that day, Daddy was very careful to keep the apartment locked from inside so that she did not wander.

There were lots of small problems, mainly things we did not realize were happening.

For example, my mother used to tie her hair in a bun. To all appearances, she looked neat. It was only by chance that I realized one day that she no longer combed her hair, and it was all very horribly tangled. I took her to a beauty parlor to get her hair cut short, as I knew this problem would continue. Mummy was very upset about that. By chance, a close relative was visiting those days, and Mummy assumed that this person had come home just to cut her hair, and ranted at that person for a long time, accusing her of chopping off the hair.

Dementia Care Notes: You had mentioned that your father was not well.

Mala: Yes, Daddy was having severe health problems that affected his mobility. He had been refusing surgical intervention for years, but he finally realized that he could not look after Mummy if he was unwell himself. He then agreed to the surgery.

Once Daddy’s problems were solved, he became mobile and also less irritable, and was determined to manage Mummy’s care himself. He still does most of the work for her, and refuses to either employ a full-time help or let us (his children) help.

Dementia Care Notes: Does your mother continue to get very agitated? What is her current state?

At Daddy’s insistence, we stopped Mummy’s medication. The difference was visible in just a few days. Mummy’s hallucinations stopped.

Mala: At Daddy’s insistence, we stopped Mummy’s medication. The difference was visible in just a few days. Mummy’s hallucinations stopped. When on medication, she used to have a hawk-eyed look most of the time; that changed. She was no longer disturbed. She was still very forgetful, but the agitation type of behavior stopped.

I feel very bad that she suffered so much (and so did Daddy) because the medications did not suit her.

Sometimes I want to kick myself for not finding out more about the side effects of medication, and sometimes I feel upset that the doctors did not warn us about them. Even when we told them of the hallucinations, they did not suggest we try stopping the medications.

I know that some patients benefit from medications; I have heard from friends whose parents seemed much better with medication. But if there are some patients who suffer side-effects, shouldn’t the doctors tell us about that? I had assumed that Mummy’s deterioration was because of her Alzheimer’s, and it was only Daddy’s repeated insistence that we try stopping the medication that made us agree to experiment.

Daddy is taking care of Mummy more cheerfully now. He cajoles her, he jokes with her. He has adjusted to her dementia and accepts that deterioration will happen.

Mummy continues to be very forgetful. Her other problems are also increasing, for example, she is sometimes incontinent (especially in the morning), and sometimes she forgets where the bathroom her, but she no longer gets agitated. She does not even try to walk out of the apartment any more, just paces in the apartment, though Daddy keeps the apartment door locked, just in case. Mummy is usually silent, though she sometimes talks to her pillow or mirror.

Some months ago, Mummy fell off a chair once and injured her arm that needed some stitches and also suffered from some hairline fractures. She kept trying to pluck off the bandage, and we had to be very alert for some days. My brother took leave to support Daddy for the operation and the subsequent care.

She also has some sleeplessness, and is responding well to a mild medication for that.

Dementia Care Notes: How does your father handle his own needs and life along with all the care he needs to give for your mother?

Mala: Daddy was never a very social person and is used to a sedentary life. He uses a dementia day care for some fixed days a week, and on these days, as Mummy is at the day care, he gets some hours of respite and also fits in any socializing or bank work or other work he wants to do. He is not willing to put Mummy in day care for all days, because he says he gets bored alone.

Daddy seems to have found his rhythm in looking after Mummy, who is more peaceful now. He says he will handle Mummy’s care as long as he can, and will ask us for help when he needs. He tells us he is confident we will help him, but he does not want this to affect our lives too much before need be. He keeps pointing out that we have our own families and careers and other responsibilities, too.

Dementia Care Notes: What about your relatives? Have they accepted your mother’s dementia?

When close relatives visit, Mummy is very happy. She answers all questions by talking constantly and incoherently, and seems to enjoy herself.

Mala: Yes. We explained it to them, and they have accepted. I know of cases where families face problems because relatives do not believe the patient has dementia, and in that respect we have been very lucky. When close relatives visit, Mummy is very happy. She answers all questions by talking constantly and incoherently, and seems to enjoy herself. Her answers may make no sense, but no one comments on that. They keep a friendly eye on her, and are affectionate.

The funny part is, when we explain her dementia to relatives, they often start telling us old incidents, some almost ten years old, where Mummy behaved in strange ways, like repeatedly getting lost inside their house when visiting. These relatives had also noticed her extreme forgetfulness, but had assumed it was absentmindedness, even though the incidents seemed rather odd. It is only now, when we all sit together and compare notes and get the whole picture that we realize for how long Mummy has been facing problems.

Dementia Care Notes: Your mother was very fond of socializing. Is that possible now, or has it stopped completely?

Mala: Close relatives do visit, and Mummy enjoys their visits. Neighbors do not visit, as they know she is suffering from some problem, and do not want to disturb.

Sometimes, we manage to take Mummy out for functions. We are hesitant because she is mildly incontinent and refuses to wear diapers, but short trips are still possible.

Actually, even now, a casual visitor cannot always know that she has dementia.

Actually, even now, a casual visitor cannot always know that she has dementia. When people are around her, she sits up straight, looks very dignified and gentle, and nods and smiles as if she is understanding everything, and in a short visit, her problem is not obvious to people who do not know her.

Dementia Care Notes: How well does she connect with her grandchildren? Are they able to accept her dementia and connect with her?

Mala: Mummy was very fond of her grandchildren. When they were young, say, less than six years old, they, too were very fond of her. Then they started sensing something was wrong with her, and would sometimes get irritated with her because of her forgetfulness. We explained dementia to them, and they became more patient. However, the bonding is not so good now, and Mummy does not seem interested in them. They do not interact much now.

Dementia Care Notes: As a family, how are you planning to cope with her further deterioration?

Mala: So far, we have been managing to share the work and everything is going on smoothly. All of us are concerned and participate in different ways. My eldest brother provides the financial support; my middle brother is always available for emergencies, and sometimes has to take so much leave I think it must be impacting his professional growth and career prospects. I try to stay emotionally connected and also keep reading up on dementia and making suggestions and so on. My father, of course, bears the brunt of it.

We give suggestions to Daddy, like once I tried to fix an ayah for taking care of Mummy and after great reluctance Daddy agreed. But unfortunately the ayah did not turn up the next day and daddy got a chance to say “I told you so!!” He then said that we have given it a try and now I would like to have things the way I want it. Beyond a point he is right and we have to respect his wishes.

Another thing: Daddy is very independent in his ways. He has not taken any of us in confidence about how he has arranged his finances.

When it became clear that Mummy can no longer sign, I suggested that he relooks at his investments so that her inability to sign does not become a problem, and I know that after that he changed some of his investments to manage them more easily, but he did not tell any of us the details. I do not want to be misunderstood, and am very indirect in the way I bring up sensitive topics like finances.

Another example is, Daddy does not believe in making a will. I tried to bring the topic up in a roundabout way, quoting some newspaper articles on problems elders face, but that is all I could do. I do not want any confusion after his death, but in our family, such topics are just not talked about.

I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future. T

I am very careful in what I say and how I say it, because in our family, we have never spoken of unpleasant things like death, wills etc., about what may go wrong in the future. There is an assumption that we will all manage to do what is needed, but also that negative topics should not be brought up.

One thing I felt strongly about was donating Mummy’s brain upon her death for furthering research on Alzheimer’s. What gave me the confidence to convince my father and brothers was the fact that Mummy has often spoken about eye donation and had explicitly wished that after her death if any of the body parts are useful to anyone, it should be donated. This wish I hope to fulfill when the time comes by donating her eyes for giving sight to a blind person and by donating her brain to a brain bank for the cause of finding a cure for Alzheimer’s. Who knows, someday this may help researchers to find a cure for Alzheimer’s and I may be one of the recipients!!

We do not talk about how we will handle the next stage of Mummy’s dementia. Sometimes I wonder, if something happens to Daddy, all this will collapse. There is nothing in writing, no will, no other instructions. I guess we will manage, though; we have done okay so far. The motto of my brother, for example, is “if I have to do it, I will do it.” We do not get emotional about these things.

Dementia Care Notes: Do you have any overall comments?

Mala: I feel very confused and guilty at times.

On one hand, when I put together all those early warning signs that were there, I feel we should have known about Mummy’s dementia much earlier, and got it investigated.

I have heard some specialists say that medicines should be the last resort for geriatrics, and that also makes me wonder, because other specialists are quick to prescribe medicines.

On the other hand, given the way she reacted to the medication, I am very doubtful about the advantage of early interventions that people keep talking about. In our case, medicines did not help at all; they made things worse, and we did not get proper advice from doctors. I have heard some specialists say that medicines should be the last resort for geriatrics, and that also makes me wonder, because other specialists are quick to prescribe medicines.

I feel angry at times that we did not receive good guidance from the doctors whom we first approached and sometimes I redirect the anger at myself for not doing enough of reading up when so much of information is available on the Internet. If an educated person like me didn’t do the right thing at the right time, how helpless will be those who are uneducated, completely ignorant of all aspects of the disease! How many elders may be getting accused for “deliberately trying to act difficult” when actually they may be in the initial stages of dementia!

I know that each dementia patient is different, but how is one to know what is best for our patient, our family?

Whatever you do, you are groping in the dark. You cannot know while acting if you are right, which step may help, and which may not. This makes me feel very uncertain about things, but I also feel guilty at times for having missed out what seems obvious in hindsight.

I think I spent a lot of time truly accepting Mummy’s dementia. There used to be ups and downs, good days and bad. On the days she was better, I would be convinced that her problem was minor, was reversible. There was hope, or maybe that was inability to accept. Is hope wrong? Did it delay our doing what was needed? Or accepting? For Daddy, his inability to accept continued even longer, and he was not able to connect her strange behavior to her medical problem and would get irritated or dejected. He was bearing the brunt of her behavior, anyway.

Daddy’s ability to accept her condition and to change his way of caring improved a lot after his health problem was solved.

One more observation is that Daddy’s ability to accept her condition and to change his way of caring improved a lot after his health problem was solved. Maybe if he had not been suffering himself, he would have reconciled to her problem and coped with it without suffering as much as he did.

Right now, though I am trying my best to support my parents, I am not able to do much for them. Daddy, who is close to 80 years old, does all the work and refuses to take help. I feel guilty and helpless and frustrated. But I cannot intrude; one has to accept the boundaries he has set. He keeps saying, “She is my wife, and I am the one who will look after her as long as I can,-if I was in her place she may have done much more for me” -and we have no choice but to respect his choice and decision and support from the sidelines as best as we can.

Thank you, Mala!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

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.

My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband

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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!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

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.

His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s

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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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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:

  1. She wants to be closer to the temples she loves to visit.
  2. 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.
  3. 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.
  4. 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.

Thank you, Eshwar!

[This is part of the caregiver interviews on this site. View the list of all caregiver interviews].

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.

Dementia Care Notes