Tag: caregiver stress

Caregiving challenges, trained ayahs, depression: a caregiver’s story

Home > Posts > Interviews with Caregivers > Caregiving challenges, trained ayahs, depression: a caregiver’s story
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Neena (name changed) is a Gurgaon-based chartered accountant with 22 years experience. She has now quit work to manage care for her mother-in-law, who is now dependent for all activities. In the interview below, Neena describes the caregiving situation and its challenges, and how she handles it. [note]

Dementia Care Notes: Please give us some background information about the patient.

Neena: The patient is my mother-in-law, aged 86 years, a graduate in music from Vishwa Bharati, Shantiniketan. She has 2 sons (aged 57 & 50),daughters-in-law , 4 granddaughters, and a grandson. Her husband passed away in 1993 and she lived independently in Calcutta and Mumbai from 1993 till 2005. She suffered a heart attack in June 2005; she had to undergo angioplasty, had a pacemaker implant in July 2006. Then she suffered vertebral fractures arising from a fall in the bathroom in July 2007, which led her to become bedridden. This led to an acute salt imbalance in her system and she was comatose for about 10 days. She spent the year 2007 mostly in hospitals, and then slowly started recovering.

Memory failures began, and the physician informed us that the symptoms pointed to dementia. They started about a year ago and gradually got worse. My mother-in-law remembers old memories like they happened yesterday, but what happened today or yesterday does not have place in her memory. Earlier a hyperactive lady, she does not wish to live as a dependant. She has simply lost the will to carry on because she has become totally dependent. It is impossible to cross the wall she has put up around her.

All the incidents since 2005 mentioned above occurred during my mother-in-law’s visits to our home, until finally she was so dependent that she could not go back at all. She is still under our care.

Dementia Care Notes: What is your role in the patient’s care?

Neena: I am the primary caregiver, with a lot of support physically and emotionally from my husband in assisting wherever he can.

Dementia Care Notes: What are the current symptoms?

Neena: A major dementia-related symptom is acute loss of current memory and lack of connectivity with family members , their conveniences , even concern for the caregiver. I have found her to be very rude both with me and the ayah – perhaps she feels we force her to go through her daily chores like walking, eating herself, etc. She tends to go through phases of aggression and hallucination, and then phases where she is very quiet.

My mother-in-law’s situation is complicated because she also has several other medical problems. For example, she is very prone to sodium imbalance. We know by now that when she seems disoriented or keeps repeating the same thing without being able to control herself or when she is very sluggish, it is time to get a blood test and to increase her salt intake. Keeping her heart condition stable is a major concern for the attending physician. My mother-in-law also has other problems, such as osteoporosis, a tendency for epilepsy attacks, hypertension, etc., and needs around 20 medicines every day. Managing all these problems on a daily basis is a challenge for us.

Dementia Care Notes: Please describe the current care arrangement for the patient.

Neena: There is no long term care for such old people in and around Delhi. She is at home and has a full time ayah to look after her. I and my husband ensure she has everything else she needs.

Dementia Care Notes: If some caregivers/ relatives are in different cities, how is caregiving coordinated and responsibility shared?

Neena: Caregiving is not shared between her two sons. My husband, the younger son, has taken full responsibility. Very occasionally, the elder son stays in our house if we go for a vacation for a few days.

Dementia Care Notes: Can you share some of the challenges you face (or have faced) in caregiving?

Neena: The biggest challenge is to get the patient to try to help herself by keeping up some basic activities e.g. eating, walking to the toilet, walking in the house, listening to music, or even watching television. While she does things and stays active when we are telling her to do things, she stops her activity as soon as we stop telling her to do things.

Her agitated calling out upsets the whole family, including my kids who are often studying in the apartment and get disturbed.

Currently she will not let her ayah leave her line of vision even if the ayah wants a break to eat or to go for her bath. We also have a household maid to help in the other chores, and we have to make this household maid sit with my mother-in-law when the ayah is taking a short break, otherwise my mother-in-law will keep calling out for her ayah, raising her volume without stopping to even breathe( literally). Her agitated calling out upsets the whole family, including my kids who are often studying in the apartment and get disturbed.

In situations like this, I quietly shut the door to her room so that she tires herself out and stops. I know she cannot fall off the bed. She will not even try to lift herself up from bed because she does not want to do anything herself. She has no awareness that she can reduce the rate at which she is becoming more and more dependent. Her physician feels I am pampering her, but I don’t see what other choice I have!!

Dementia Care Notes: For which activities is the patient currently dependent?

Neena: She is dependent for every activity.

Dementia Care Notes: Please share some caregiving incidents that you found fulfilling/ heart-warming.

Neena: In the initial stages, every time there was a crisis and she was rushed to the hospital it would be a relief to be able to bring her back home. Once she told me, “You must have been my mother in your earlier life, that is why you take such good care of me. Even God knows that I should be in your house when I have a major ailment coming and that is why I come to you every year.” ( For three consecutive years this had actually happened).

Dementia Care Notes: How supportive have relatives and friends been? How do they help you?

Neena: Initially everybody sympathises, but then in the end it is only the primary caregiver who has his / her hands full.

Children at home can be amazingly supportive because they see what it takes. I remember once I came back from office to find my daughter ( then 15) studying in her grandmother’s room for her CBSE class X examination the next day, because her grandmother had complained of a chest pain and was restless! My son of 14 years often takes over from the ayah when his grandmother goes for her walks around the apartment, and even gently coaxes his grandmother to walk a little more.

Dementia Care Notes: Please describe the adjustments/ compromises you have made in your life to care for the patient.

I have two teenage kids and my husband travels a lot, and my family depends on me for running the house and managing her care. I could have continued working, but the stress got to me so I simply QUIT.

Neena: I am a qualified chartered accountant, but I had to finally give up my profession after 22 years in service because of the lack of availability of hired help on a continuous basis to assist the patient in her daily chores. It was simply getting impossible to deal with the stress of the ayah leaving and training a new one. And dodging the office. I have two teenage kids and my husband travels a lot, and my family depends on me for running the house and managing her care. I could have continued working, but the stress got to me so I simply QUIT.

Dementia Care Notes: Do people around you understand dementia? Are they able to interact with the patient?

Neena: Dementia is not a word understood by many. I heard about it from doctors, researched and understood some of it.

Ayahs used for looking after patients are untrained maids who claim they know patient care. While feminine instincts help them handle a part of it, not all ayahs are willing to understand the nuances. Some come to work only for the money and don’t wish to understand the work involved or tolerate the stress. When I get an ayah who understands, I get some relief, but ayahs are around for a maximum of 5 to 6 months at a stretch.

Dementia Care Notes: Have you faced/ are you currently facing social isolation or stress because of your caregiver role? How do you handle it?

Neena: Self inflicted social isolation happened in the early phase when both my husband and I were afraid to stay away longer than essential. When we ventured on any short holiday- 2-3 days we would get a call from my mother-in-law saying she was dying and we must be back that day. The ayah would be stressed, and so would we. We had moved from Calcutta to Delhi and we had no relatives here. That made life more difficult because we knew no one we could leave her in the care of. Her elder son was in Mumbai and could not come because he had a job to handle too!!

Gradually we got used to the stress and learnt to recognize the false alarms. Finally we started extending the length of our vacation. In 2008 we did a 15 day road trip to Leh, Ladakh, when my husband’s brother came and stayed with my mother-in-law for 10 days.

Dementia Care Notes: What sort of additional resources/ facilities/ services would help you in better caregiving?

Neena: A very essential need for such patients and their caregivers is an old age facility / respite home where the patients can be cared for in hygienic and clean conditions. While some really nice facilities have come up in and around Kolkata (my mother lives in one such), there is nothing around the NCR region. It is my dream to one day start a facility here and then gradually in other metros as well.

Dementia Care Notes: Any other comments?

To everybody whose aged parent is being looked after by another sibling / spouse, I would say, please give your support to the primary caregiver, because caregiving is one of the most difficult and emotionally draining phase in their lives and every bit of emotional support helps the caregivers cope with the stress.

Neena: When you look after a parent who is very old and suffers from dementia, the biggest challenge is to keep the primary caregiver from getting into acute depression . A newborn will never challenge whatever you do to care for him / her but a geriatric who needs as much care will challenge you at every step because they become the parent who has seen it all…If the caregiver child has siblings, the parent with dementia will complain to these siblings about how she / he is uncared for, etc. Often siblings who are not responsible for the care, and are living far away, tend to believe the perspective of a patient, and do not understand that the patient is unwittingly thinking only of her/himself). This often leads to misunderstandings amongst siblings and in the end leaves the caregiving family feeling very let down.

To everybody whose aged parent is being looked after by another sibling / spouse, I would say, please give your support to the primary caregiver, because caregiving is one of the most difficult and emotionally draining phase in their lives and every bit of emotional support helps the caregivers cope with the stress.

Thank you so much for sharing this, Neena.

[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.

She was only pretending to forget: A family in denial even after the patient’s death

Home > Posts > Interviews with Caregivers > She was only pretending to forget: A family in denial even after the patient’s death
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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.

Thank you for sharing this, Rukmini.

[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.

Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared

Home > Posts > Interviews with Caregivers > Supporting the primary caregiver: Mistakes made, lessons learnt, tips shared
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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.

[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