Tag: diagnosis denial

My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver

Home > Posts > Interviews with Caregivers > My mother is my top priority now: a daughter describes how she became an informed and empathetic caregiver
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Nadira (name changed) is a highly-reputed consultant who has executed sensitive and critical assignments with several well-known multi-national companies. She is now taking a break from professional work and residing in India, caring for her 80+ mother who suffers from Alzheimer’s. In the interview below, Nadira shares how the progression of her mother’s illness reflected in behavior changes, how the family took time registering that these changes were different compared to earlier, more regular difficult behavior displayed by her mother, and how she has now educated herself on the condition and developed the patience, love, and empathy required to care for her mother.[note]

Dementia Care Notes: Please share some background information related to your family and situation.

Nadira: I was the first person in my extended family to leave home at 17 years of age – to study abroad and shape my future. I am the youngest of three children; my sister and brother are much older than me. It always seemed to me like there was a whole generation missing between my parents and I. Because of this, my relationship with them was always fraught with confrontations and rows, especially in my late teens and early twenties.

The relationship with my mother in particular was pretty fractious, probably because we both have very similar personalities; we are both headstrong individuals with quick tempers. Our blow-ups were frequent, harsh and at times even violent, because she seemed to be possessive and always wanted to have her own way.

After I left home for studies, contact with my parents was restricted to short annual visits. My contact with my siblings who were married and lived different parts of the world, was even less.

My parents lived in India by themselves because my siblings and I were settled abroad. Looking back now, I realize that my mother started showing symptoms of dementia around the mid-1990s. Without any knowledge of what he was dealing with, my father took care of my mother until 2001, at which stage my parents moved in with my older sister. Sadly, my father passed away barely 15 months after the move. It was after my father’s passing that my mother’s condition was diagnosed. My sister handled my mother’s care for seven straight years after this diagnosis, and then I took a sabbatical and moved to India with my mother to take care of her so that my sister could get a well-deserved break.

Dementia Care Notes: Please describe the initial symptoms that your mother showed.

Nadira: My mother began to act strangely around the mid-1990s, and this became more pronounced over the years. Some examples of such behavior:

  • Frequent episodes of forgetting things, like leaving milk on the stove till it burnt, or repeatedly opening the same container to check what was in it;
  • Lost interest in cooking;
  • Lost interest in dressing smartly (she was always immaculately dressed);
  • Repeatedly asking the same question in quick succession;
  • Very suspicious of my father’s motives and behavior;
  • Frequent outbursts of anger to the point of nastiness.

Dementia Care Notes: How did the family respond to such behavior?

Nadira: As my siblings and I had all settled abroad, my father was our mother’s the primary caregiver. Our visits to India were infrequent, and during our phone conversations he rarely shared his difficulties with us. It was only on our short visits that we experienced his situation first hand.

I think my father sensed that something was not quite right with my mother, although he never regarded it as a medical problem. He was extraordinarily patient with her, particularly in the later years, and was very concerned about who would care for her after his death.

In the earlier years, he would sometimes tell me, “She is very difficult now” or “Please find me somewhere else to live; I want to live separately”. I didn’t realise that this may have been said out of a feeling of exhaustion or frustration in taking care of her. Instead I wondered if it was a sign of the marriage breaking up. In hindsight, however, I know that the marriage became stronger and they needed and loved each other more in their twilight years. In fact, my mother became increasingly dependent on my father and would do nothing without him, and he, in turn, was tender and compassionate in his care of her.

In those years, my visits home would start off well for a couple of days before the terrible rows started. My mother would be very possessive and hated my going out to visit other family and friends. I had no understanding of her situation and became extremely frustrated with her behavior. Our rows were very nasty and often ended up with a bitter, hurtful exchange of words and sometimes even physical violence. Often I would pack up my bags and leave to stay someplace else. She would then soon seek me out to where I was staying and apologize saying “Please forgive me, I know I was not nice to you, but I can’t remember what happened; please come back home.” I went back sometimes, but often didn’t because I assumed her behavior was just her usual ‘nonsense’.

My sister related similar hurtful experiences on her vacations in India, with fights that made her pack up and leave the house, taking her young children along, to stay elsewhere instead.

Throughout this period my sister and I saw our mother’s behavior as gradual worsening of the sort of person she’d always been. It never occurred to us that something may be medically wrong with her.

Dementia Care Notes: What happened when your father’s health started failing?

Nadira: Only when he turned 90 did my father allow himself to admit that he was unable to handle my mother’s care alone. He agreed to move out of India to live with my sister. My sister became their sole caregiver from then onwards. Just over a year after the move, he suffered a massive stroke that left him completely incapacitated and bedridden. As he grew frailer by the day, my sister and I were concerned that, perhaps worry about our mother’s care after he was gone may be ‘holding him back’. One morning when nursing my father, my sister assured him that he need not worry about mother and that we would take good care of her and that he could ‘move on’ if that concern was holding him back. Our mother overheard this, and interpreted it to mean that we didn’t want him to live and in effect were “murdering” him, and she became uncommonly agitated and accusing. We felt terribly hurt by her words and accusations.

Dementia Care Notes: Your sister was the primary caregiver for seven years. Please share data from this period of your mother’s care.

Nadira: After my father’s death, my mother insisted on coming back to India and it was then that we first had her examined by specialists. She was diagnosed with ‘senile dementia’ and I recall the doctor telling us then that it was not reversible and that we should make arrangements for proper round-the-clock care for her. At this stage my mother was adamant about living in India, even if it meant living on her own. As a family we thought it would be therapeutic for her to be in familiar surroundings in the aftermath of my father’s death, so we went along with it for a few weeks.

My sister and I took turns in caring for our mother for a few weeks at a time. This was one of the toughest periods in caring for her. Being in familiar surrounding didn’t seem to help. She got increasingly agitated by the day. Everything seemed different from what she remembered it to be or wanted it to be. She would get very angry and even throw me out of the house. I would often sit on the pavement, late at night waiting for her to calm down and let me in again. We were all grieving for our father in different ways, but I could not empathize with her behavior, and it literally drove me away. I was unable to take care of her even for a few weeks because of her ‘irrational’ behavior. Thereafter the responsibility for my mother’s care reverted completely to my sister.

After a couple of days of living alone in our hometown in India (with hired help) my mother realised that she could not live on her own and was moved temporarily to a relative’s place until my sister could make the required visa and travel arrangements for her to move out of India and back to her home. The nature of my work at that time involved a lot of travel, often at short notice. I worked long hours, and lived in hotels and serviced apartments. There was no possibility of my taking my mother with me and giving her the care she needed, even if she agreed to let me care for her. I did, however, take on all the financial responsibility as my contribution towards her care.

My sister had a demanding job and her children were still in junior school when she took on the care of my mother. She juggled all of these, set aside her own differences and conflict with our mother, accepted my mother’s condition as a fact, and took care of her for seven years.

For the first couple of years after my father’s death, I avoided visiting my mother. This was because both my sister and I felt that my presence aggravated my mother’s symptoms, possibly due to our past strained and fractious relationship. My mother seemed to tense up just on seeing me. So for those first few years, my sister handled the actual care of my mother alone. These were also the most difficult years in terms of my mother’s strange behavior. There were incidents when my mother wandered off because she wanted to “go back home.” She also became progressively incontinent but refused to admit it. She refused to bathe or clean herself, and threw tantrums to eat. It was exhausting for my sister and the home help to trail my mother and clean after her and keep the home from smelling unpleasant. My sister always had to be on the guard in case my mother wandered off.

After around three years of my father’s death, within a short period of three months, my mother suddenly deteriorated physically in a very visible manner. She lost weight, started having problems walking and developed a shuffling gait. My mother had been prescribed anti-psychotics but my sister gradually discontinued them as she felt that they were not helping.

I finally visited my sister around that time, and was shocked to see the state of my mother. She looked incredibly small and shrunken and was barely mobile. At this time the behavioral symptoms she displayed included:

  • Depression.
  • Suspicion and delusions.
  • Increased bouts of sleep, especially in the daytime.
  • Poor appetite.
  • Very poor short-term memory.
  • Hallucinations, especially at night.
  • No inclination to communicate.
  • Unable to distinguish between reality and TV.
  • Generally helpless.

It became obvious to me then that caring for my mother was a very strenuous task. While I could not afford to stop working, I decided to commit to going over to my sister’s home at regular intervals and take over our mother’s care so that my sister could get a break. It was the first time in years, during this visit, that my mother and I did not have a row, and this helped me make the decision to take a more active role in my mother’s care. I also began to read up, research and understand the illness afflicting my mother.

Although my mother’s care was very challenging at times and she was becoming increasingly dependent on hands-on care, she also exhibited spells of lucidity and tender moments. I remember once, I noticed that her toenails needed trimming. I sat her down on the stairs and began cutting her nails, when she started crying and said “I can’t believe that I’ve reached this stage and that you have to do this for me. I used to do this for you not so long ago.” I found myself crying along with her and reassuring her that it was her time to be pampered.

Dementia Care Notes: Please describe the next phase of caregiving.

Nadira: After seven years of continuous caregiving, my sister finally said she needed a longer break. As it happened, I had just completed some very intense and stressful assignments and was planning to do something different for a while, and so I agreed to look after our mother in India for a few weeks to give my sister vacation time.

Those few weeks in India were an eye-opener for me. My mother seemed to be so much happier. Friends and family were dropping in to see her after many years; she struggled with remembering names but she knew most faces. She revelled in her new surroundings, loved the attention she got, and the fuss I made 24/7! The thought of making her go back to live with my sister, in a country and environment where her life was very different, seemed unfair at this stage of her life.

So my siblings and I discussed other possible care giving options. We decided to keep our mother static in our home town in India, and agreed that we would take turns to come down here to care for her. I thus set up a home that would be comfortable for caregiving, and large enough for all of us to have our own space. We also agreed that the bulk of the caregiving would be taken up by my brother as he had now retired and had fewer responsibilities. I redesigned my professional commitments so that I could get enough breaks to come to India and take over care whenever my brother needed to get back to his home country for a few weeks to manage his affairs.

This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

Unfortunately, after a few months my brother found he could not cope with the changes that this arrangement entailed. He changed his mind about his commitment. This meant I had to turn down a new assignment and return to India to again take charge of my mother’s care. My siblings suggested that we place my mother in an institution, but this was not an option for me. This situation obviously led to terrible strife among us siblings, and was made worse by poor communication between us.

In the last year, since I took charge of my mother’s care, I have educated myself further on dementia and caregiving. I have benefited from caregiver Support Group Meetings and have had the time to think of ways in which I can be more productive in the area of caregiving.

Dementia Care Notes: Please share how you got your mother diagnosed and how the family responded to it.

Nadira: In the early years my father knew that something was amiss ‘mentally’ with my mother but did not consider getting medical help as he assumed it was related to aging. However, he was quick in getting medical attention if it had something to do with her physical well-being.

Although we had our mother examined just after my father’s death, and we were told that there were ‘multi infarct lesions on the right side of her brain’, and that she had dementia, neither my sister nor I took the trouble of finding out more about this illness at that time. We just accepted it as a fact and cared for her to the best of our abilities. Seeking specialised medical attention or research on what could be done for her, did not occur to us for reasons I still don’t understand.

It was only when I took charge of my mother’s care again, seven years after the initial tests, that I took her for a proper check-up and diagnosis. We didn’t even have the original MRI and other medical records from previous tests to compare the changes that had taken place in the intervening years.

We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness.

I often wonder why it took us so long to realize the consequences of her medical condition and why we did not research to see how best to provide effective care. We are all highly educated in our family, intelligent, articulate and have very successful careers. There are enough books on the topics and information is so easily available on the internet. And yet, we didn’t bother to educate ourselves on our mother’s illness.

Were we so caught up in our own lives that we neglected the fact that she suffered an illness and was not ‘just getting old’? All three of us lead very busy lives of our own in different parts of the world. Speaking for myself, it is possible that I did not want to face the fact that there was a problem that needed to be dealt with, thinking it would interfere in my life and add to the stress of my own high-profile career. And I have this ‘incredible’ ability to shut things out of my mind when I want to.

Or it may have been that the reason for our inability or unwillingness to see this as a medical condition was our impression that her behavior was a continuation of old characteristics, which were getting worse with age. But could it possibly be that we were in denial and not wanting to face up to the consequences of her medical condition? After all, our aunt (our mother’s older sister) had died of dementia. She had even wandered off from home and remained missing for almost two weeks, a very traumatic time for all of us.

Or perhaps was caused by a combination of all of the above factors.

Whatever it was, although our mother was being cared for to the best of our abilities, we were slow off the mark in caring for her in an informed manner. That’s for sure.

Dementia Care Notes: Please tell us about your family history of dementia.

Nadira: My aunt died of dementia well over a decade ago. I had seen her once in the early stages when she showed symptoms such as repeatedly asking the same question. Another instance comes to mind when she had come down to visit my mother and stay for a while. No sooner had her son left after dropping her off, she became insistent that she had to go back immediately although the plan was that she’d stay the week. The ruckus she caused did not leave my parents any option but to take her back immediately. The family would not talk of the problem except implying that “something was not right in her head”. Then, there was the incident of wandering I just mentioned earlier, when my aunt walked out of her home and was found in a pathetic state almost two weeks after she had gone missing. Even after this incident, no one talked about her medical condition. Next I remember being told that she was bed-ridden, and then that she’d passed away.

At a recent family gathering of my cousins when discussing my mother’s health, we realised there could have been other elders in the family who probably had dementia. We recalled family anecdotes narrated to us by our respective parents that indicated that our grandmother exhibited extreme forgetfulness (such as being unable to recognize even close relatives) and other typical dementia symptoms. However, no one had linked these stories together earlier on to realize that dementia could be running in the family.

Our recent awakening, though, has had some benefit. My uncle (my mother’s younger brother) who is around 80 years old and had been showing dementia symptoms for some years has been diagnosed recently, when he is still in a relatively early stage.

Given the family history, my sister and I are aware of the possibility of our developing dementia later in life. This is something we need to think about, and plan for, more seriously in the near future.

But even now, not all of us in the family understand dementia and how it affects behavior. My brother, for example, still feels that my mother’s current behavior is no different from what she showed fifty years ago–this is in spite of the fact that I have shared with him all my research on dementia.

Dementia Care Notes: You have recently consulted doctors for your mother. What is her current state, and what do doctors advise?

Nadira: My mother is currently wheelchair bound, and can only walk very short distances (like room to toilet) and only if supported. She is also incontinent. She is confused with languages, often speaking in one when she thinks she is speaking another. All her personal hygiene needs have to be taken care of by others.

However, she is still able to talk sensibly at times and has moments of lucidity, when she can recognize faces. On a good day we can play games, listen to music and sing along or read the newspapers (although she ends up reading the same line repeatedly!). She can still do some mental arithmetic and even tries to cheat when we play games :-). She eats well and loves her food.

My mother has always had mood swings. Every few weeks she has an episode of extreme agitation, often also showing delusions and hallucinations. Then, for some weeks, she is much calmer, even slipping into a depressive state where she cries and says despondent things like, “Why am I alive?”

We have seen this for years, but had never thought of investigating it or consulting doctors for it. After talking to doctors now, I realise that these mood-swings may not be because of dementia, but could be due to some form of clinical depression, and may be treatable.

We have seen this for years, but had never thought of investigating it or consulting doctors for it. After talking to doctors now, I realise that these mood-swings may not be because of dementia, but could be due to some form of clinical depression, and may be treatable. I am consulting doctors to see a way forward, because managing the mood swings would greatly improve my mother’s quality of life.

Dementia Care Notes: What is the current care arrangement for your mother?

Nadira: Currently, I am the primary caregiver. I have a paid attendant who attends to my mother’s food and hygiene. My mother has grown very fond of this girl. We never leave my mother alone in the apartment; if I need to go out, I do so only when the attendant is at home to keep an eye on my mother.

My mother has her own room and bathroom. The bed she sleeps on is very low so that she does not hurt herself in case she falls. There is protection on the floor in case she does fall. The bathroom has side rails to help her sit up straight; the toilet seat is padded for her comfort. The tiles were replaced to make them anti-skid. I have a large mirror in her room – this helps her to reorient herself, especially when she wakes up in the morning, to who she is and how old she is. There are a few pictures of the family in the room. At times these pictures have a negative effect so they are placed in a way that she can’t see them all the time.

As my mother spends a large portion of the day in bed, I have had an air mattress installed to prevent bed sores. I also use incontinence under-pads on the bed at night to minimize soiling of sheets and mattresses. Also used are incontinence “pants” instead of diapers as these are easier to put on. Besides, because they are pull-ups my mother assumes they are normal knickers. I used to import both the under-pads and pull-ups from overseas, but have now managed to source these in India. I have a supplier who delivers my monthly supplies to my home.

The most time consuming part of my mother’s care is batheing and getting her cleaned up every day. On good days we might spend about ½ an hour. On difficult days this could stretch to an hour or more. But once she is up, my mother is not very difficult to handle. She has a healthy appetite and eats two meals a day. Most often she manages to feed herself. She is not dextrous enough to eat with a spoon, so often she uses her fingers, which means we have to pay particular attention to hygiene. Wearing diapers can make one’s skin itchy and she scratches herself at night. So we make sure we wash her hands thoroughly and always keep her nails short.

Her diet is managed carefully to ensure that she does not suffer from bowel problems – she is given at least two kinds of fruit every day. She loves chocolates but this is rationed and given to her after a meal and any time before 5.00 pm. If she eats any sweets, especially chocolates in the evenings, it tends to keep her awake at night, so I avoid this as much as I can. Sometimes when she does not feel like having a second meal, she is given a glass of Ensure as a meal replacement.

Music works like magic most times to keep her occupied, calm and/or to de-stress her. She often sings along if she recognizes the song. When she occasionally asks after my siblings and she is in the right frame of mind we talk on Skype which she really enjoys. She thinks they are in the room with her! She can also occasionally converse on the telephone, but this is very rare. On a good day she enjoys having visitors and listening in to conversations even if she does not participate in them.

Dementia Care Notes: How has this past year of caregiving affected you?

Nadira: It has changed me in more ways than I thought possible.

I was always a very driven person, impatient to get on with what needed to be done, and short-tempered with people – a very hard nut to crack. Caregiving has made me discover a huge fund of patience within myself that I never knew existed! I have found myself capable of far more love and empathy than I thought I had.

For almost a year now, I have spent the bulk of my time caring for my mother, with my professional life on standby. While I have a small social circle of old school friends and extended family, and I am regular at the gym, I am living a very different life from what I was used to. For someone who worked 16 hour days 6 days a week and was on call 24/7. I now have a lot more time for myself to pursue other interests. I used to spend a lot of time travelling earlier; now I am losing air miles for not using them before they expire! The phone is more or less silent and there are only a few emails that need my urgent attention.

Yet, I can categorically say that I would not have it any other way. I am happy with what I am doing, and find the time I spend with my mother enriching.

Dementia Care Notes: What are your plans for the future?

Nadira: My current focus is on getting my mother as stable as possible, and using medical advice for components of her condition that are treatable. I have also set up a good, suitable environment of care.

My mother has a past history of “abandonment” and I would like her to always have a family member living with her. Hence, I am not considering placing her in a long-term stay facility as an option–I suspect placing her in such a facility would make her feel abandoned and therefore pull her down.

Once my mother is happier and better settled, I hope to work out an arrangement with my sister to take turns for care. I can then sign up for professional assignments for the months when my sister is handling care. The decision I take will be determined by my mother’s care situation, whether I do it myself or share it with my sister. My mother is my top priority right now.

Thank you for this detailed and frank interview, Nadira!

[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.

Father thought I wanted to kill him: a daughter talks of her father’s dementia

Home > Posts > Interviews with Caregivers > Father thought I wanted to kill him: a daughter talks of her father’s dementia
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Nayantara (name changed) is in her forties, and lives with her parents because her father has dementia and her mother needs help in his care. Unfortunately, though her father has been showing strange behavior for years, and has been diagnosed with dementia, family members (his relatives and his wife) refuse to accept the diagnosis and insist that he is normal. When Nayantara tries to explain the problem, they accuse her of exaggerating, and sometimes even doubt her motives. They also accuse her of not taking care of her father, though they are not really willing to help. [note]

In this interview, Nayantara describes the situation and talks of the strange ways in which her father acts, and how she copes with the stress.

Dementia Care Notes: Please give us some background information first.

Nayantara: Father comes from a poor family. He has a physical deformity because of which his parents neglected him and were unwilling to pay for his education. Being a brilliant student, he funded his studies by taking tuitions for younger children. His childhood problems, however, left him an insecure person, prone to anger.

All those years we just thought he was a difficult man to live with.

Father’s strange behavior is something my sister and I have seen for many years, such as episodes of disproportionate anger and walking out of the house. My mother always considered them normal, and as they increased, we did not really think there was a problem and did not consult a doctor about them. All those years we just thought he was a difficult man to live with.

When I finally approached a psychiatrist because of some more problems we faced, the psychiatrist conducted tests on Father and gave the diagnosis of dementia. He told me that the dementia had probably been growing over the years and may have been the reason for the troublesome behavior earlier.

The diagnosis happened about three years ago, and Father has been getting worse in spite of the best care we are able to give. Earlier, he would walk a lot and talk to people; now he has withdrawn completely. Unfortunately, no one in the family believes the diagnosis and they treat him as a normal person and expect him to behave as one. This puts stress on him, because he is not able to remember the incidents they mention, and gets even more agitated. Once, for a period of a few weeks, he was convinced that I was trying to kill him. That was particularly traumatic for me, because people believed his accusations.

Currently, we have employed a full-time attendant so that he gets the attention he wants. He is relatively stable and withdrawn, and seems okay most of the time, but I am finding it a problem to balance caring for him and working to earn money to pay for the expenses we incur.

Dementia Care Notes: You mentioned earlier episodes of strange behavior, prior to the diagnosis. Please describe them.

Nayantara: Often, Father would get angry for trivial reasons. For example, if guests/ relatives had come over, he felt he was not getting attention the way he should, and would get furious. If someone else was served water first, he claimed he was being mistreated or neglected. In that mood, he would throw things (bottles, plates, whatever he could) or refuse to eat food.

He also started walking out of the house in anger. He would not come back on his own, and my sister and I would have to go around looking for him. Usually, he would always head for the park near our house, perhaps to make sure that we would find him and bring him back.

These episodes would upset everyone, and we would get angry at him after bringing him back, and he would yell back, and the whole mutual screaming would continue for two to four days before it subsided.

Sometimes, instead of getting angry and throwing a tantrum, Father would react to his perceived neglect by withdrawing totally and not talking to anyone.

Most of these episodes were related to there being a crowd in the house, such as for a family gathering or function.

All through these, my mother and others behaved as if this was normal behavior, and my sister and I also assumed this to be so.

Dementia Care Notes: What made you consult a psychiatrist?

Nayantara: Around three years ago, Father changed in many visible ways. One was that he became obviously weaker physically. He used to be so fond of long walks, but now he started spending hours at home, just sitting and looking at the wall. Though he had always been an introvert, his talking reduced to a level that was alarmingly low.

He also became very suspicious of everyone and everything, and talked as if everyone was conspiring to hurt him or rob him.

I felt this was not normal, and decided to consult a psychiatrist.

Dementia Care Notes: How did getting a diagnosis change things?

Nayantara: The main change was that I understood he had a problem and would not get so upset when he was angry or behaved in inconvenient ways.

Unfortunately, my mother and the rest of the family do not believe the diagnosis.

Dementia Care Notes: What does your mother say about his behavior if she does not accept the diagnosis? When he accuses you of mistreating him, does she believe his accusations?

Nayantara: My mother thinks Father is normal, and that all his behavior has been, and continues to be normal. She says his walking out of the house and not returning till we located him and brought him back, was normal. She believes he is still normal.

She does not believe his accusations, but has never stood up for me or defended me with him or with my aunts when he has accused me. Father always suppressed her, not allowing her to go out of the house or talk to people, and she has never developed the confidence of tackling him, so she does not know how to react to such accusations.

Dementia Care Notes: Please describe the incident where your father thought you were trying to get him murdered.

Nayantara: That was awful.

…my father became convinced that I had hired someone to kill him

I don’t know what prompted it, but my father became convinced that I had hired someone to kill him. He thought I was after his money. He told my mother; she did not believe him, but didn’t know what to say to him. He then called up his sisters in Hyderabad and they rushed over to Bangalore the very next day. He told them to go to the police immediately because his life was in danger.

My aunts began to scold me. They did not go to the police but started telling me that what I was doing was wrong and that I should not do such a wrong thing. They told me to transfer his money to their names and said that once I did that, they would look after him.

I felt very hurt, but I tried to stay in control, and told them that he was confused and not normal. They did not believe me, and kept saying I was cooking things up. I asked them to wait for a day or so and watch his behavior before deciding.

By evening, Father had started acting vague, and my aunts said that maybe there was a problem with him. I asked them to stay for another day to observe him but they said they had families to look after, and left that very evening.

I felt very bad that they had believed him and that everyone had gathered to curse me like that. I almost broke down.

Dementia Care Notes: But if they thought his life was in danger, wouldn’t they have tried to take him away from home first, instead of ‘scolding’ you? If they believed him even a little, would they have gone back and left him here, living with you?

Nayantara: I don’t know why they behaved in that way if they didn’t really believe him. The morning they came, they kept insisting that I transfer all the money to their account so that they can look after him, and when I refused, they seemed to lose interest. Maybe they spoke like that not because they believed him but because they thought he would be easy to look after and they felt he had a lot of money. I don’t know what they really believed or wanted; all I know is they kept saying harsh things to me and I almost broke down.

Dementia Care Notes: Did your aunts know of the diagnosis?

Nayantara: Yes, I had told them of the diagnosis, but they claimed I am exaggerating normal problems any old person has, just to get his money.

One thing is, Father’s behavior is not uniform. On some days, he seems almost normal. Also, when they visit for a short while, he seems normal, and his strange behavior becomes obvious only if they stay long enough, which they do not. Even if he behaves oddly, they say it is an occasional aberration, not a medical problem.

I have a medical certificate of the psychiatrist who has been attending to Father. When I told my relatives about it, they said I must have influenced or bribed the psychiatrist to give such a certificate and that I was trying to get Father declared mentally unfit to get his money.

I have stopped trying to explain that Father has a medical condition

I have stopped trying to explain that Father has a medical condition or that I have a formal diagnosis for him. What’s the point! Instead of believing me or trying to understand, they only start accusing me of things like wanting to rob Father! They are not willing to help but very quick to criticise.

Dementia Care Notes: Are your aunts still in touch with your father? Does he still complain about you to them?

Nayantara: Whenever my aunts talk to Father, he gets agitated because they remind him of something that disturbs him, or that he does not remember. They do not take his mental state into account while talking to him. I have requested them not to talk to him, but they continue to call him up once in a while, and every time they do so, he gets disturbed and becomes difficult to handle.

Dementia Care Notes: Has he often shown fear of attack and murder?

Nayantara: There was once a period of one-and-a-half month when Father thought that my mother was trying to kill him and would become very agitated if he saw her. For that entire period, my mother moved to my room and made sure that Father did not see her. As Father was mainly staying in his room all the time, we were able to do this.

Then, there was this phase when he was convinced that something was being stolen from his room every day. He would open and close his cupboard several times (all in the evening, after 6pm) to confirm that everything was still there.

Poisoning is another thing Father was very scared of. Once he stopped drinking milk for several days, claiming it did not taste the way it should and had been poisoned.

His paranoia was so great that for several months, he made it a daily routine that I should touch him and swear that I would not cheat him or kill him. He even insisted that I fall at his feet as part of this daily swearing. He made me write this on stamped paper as a guarantee and kept this paper carefully in his cupboard, as if that was protection.

Dementia Care Notes: Are there other strange behavior patterns you’d like to share?

Nayantara: Well, Father acts strange in many ways. Medicines, for example. He will keep acting suspicious of his medicines and say he wants a medicine changed. He refuses to take the old medicine, claiming it is ineffective, or that it will harm him. I therefore have to consult the doctor and get the medicine replaced, typically by another brand for the same medicine.

He seems very insecure in spite of all we do to keep him safe and happy.

Another thing that bothers Father is the thought of death. He is very scared of it, and cannot bear to see any death in any TV serial. He cannot even bear to see someone cry, and makes us put off the TV if there is a scene involving crying. He seems very insecure in spite of all we do to keep him safe and happy.

On some days, if I touch him affectionately, he looks happy. On other days, he reacts to that gesture with surprise and says, why, what’s wrong, am I dying?

Father’s disorientation causes all sorts of problems and it is not always possible to prevent them. For example, he likes to drink hot milk very early in the morning, and so I keep it in a flask. I heat it late at night so that it is still hot when he takes it at his usual time. One day he decided to have it earlier, just after I’d prepared the flask for him, and he poured the milk directly in his mouth instead of using the glass I keep near the flask. The milk was so hot it scalded him, and he spilled it over his body. As a result, he got boils in his mouth and all over his body and it took many weeks for the boils to go because he is a diabetic. We need to be very careful all the time, because he does not know what he is doing.

Sometimes, when I go out, Father feels uncomfortable and wants me back. For this, he complains of things that he knows will make me rush back. A few days ago, for example, I had gone out and I got a call from home that Father was complaining of severe chest pain. Though I suspected this was not so, I could not take any risk, and rushed back. I talked to the doctor, who said that there was a pill he needed to take if he genuinely had pain, but he should not take the pill if there was no pain. I took the pill to him and told him what the doctor had said, and Father just shrugged and said that he didn’t have any pain.

One more thing: Father is very good at hiding things. Because he wants to have money easily available, I have given him a thousand rupees. He keeps this money on him all the time. He even holds it in his hand when he is changing his clothes or having a bath. Sometimes, when he cannot hold it, he hides it in his room, but he always manages to find the money. He may tell the attendant looking after him where he has hidden the money, but he also instructs her not to tell anyone else or the money will get stolen.

Dementia Care Notes: Please share any incident which was heart-warming for you.

Nayantara: Once, my guru was supposed to come home for a visit. I was very tense as I thought Father would complain about me to him, telling him how bad I was, how I did not care for him, spilling out all those complaints as he did when his sisters came.

But when guruji sat down with Father, Father was very mellow. He told guruji that I was looking after him very well, and that I was a very good daughter and that he doesn’t have to worry about anything because I am there with him.

I was totally stunned by Father’s words, and very touched. I felt that, deep down, Father appreciates what I do, and so my effort is worthwhile.

Dementia Care Notes: Please describe your father’s current state.

Nayantara: Father is totally withdrawn now. Once, he would walk several kilometres every day, but now he stays in his room all the time. He does not try to walk out of the house any more; I think he is scared that we will not bring him back.

He also needs help for his normal activities, like batheing and eating. We have got a full-time attendant to help him, and I think that is good because he is very happy that there is someone with him all the time. He keeps telling her to do things, get me water, take the water away, put on the fan, put off the fan, fetch me the kerchief, keep it back, and so on. When he would do it earlier with my mother or me, we found it difficult to handle because we would have to drop whatever we were doing to attend to his demands, but this attendant is employed for just this work, and she is able to do what he wants, and he is happy he is getting the attention he likes to get.

Healthwise, Father also has several other problems. He has gastroparalysis, and is a diabetic and hypertensive. He also has vascular disease and is a cardiac patient. This means that we have to keep taking him for various checkups, and that is a struggle. Because of his dementia, he is often paranoid and wants to change doctors because he starts claiming that the current doctor is trying to poison him.

There are days when the situation depresses Father. In spite of all we are doing to keep him happy, he claims that he wants to die, and threatens to jump out of the window. That hurt me, because we are really doing so much to keep him happy. What else could we do? But he is not happy. We have taken precautions to make sure he cannot jump out of the window, but the fact that he thought about it made me very sad.

Dementia Care Notes: Please describe how you and your mother cope with the stress of caregiving.

Nayantara: I am fortunate enough to have a good circle of friends who understand my problems and I can talk to them and meet them. In addition to meeting friends, I love music, and I sing to overcome my stress. I have also found ways to feel more at peace about caregiving now.

My mother, on the other hand, feels neglected and lonely. She gets depressed if I go out of the house, and wants me to stay at home all the time, saying it is my duty to stay with her and not go out. I would earlier listen to her, but then I realised that I cannot pause my life because of this; my life has to go on in parallel.

Dementia Care Notes: You mentioned that you are more peaceful about caregiving now. Please share what has helped you do what you must do.

Nayantara: What has made the greatest difference is my de-personalizing the situation. Earlier, whenever I interacted with him, I thought of him as my father, and of myself as a daughter, and all sort of expectations and disappointments and hurts came in, because I did not want to be accused of all sort of things by my father. I expected affection, and there was none.

Now, before I go in his presence, I remind myself that he is a patient, and that I am like a nurse. That gives me the strength to take any criticism or agitation in my stride.

Father knows that I am more important in his care than others who work for him. When he has a problem, like when he thinks he is unwell, he calls me to tell me about it, though he may not tell my mother or the nurse. He will call me and tell me about his problem, and say I should take him to a doctor otherwise things will get worse. At that time, if my response is not the way he wants it, or if he thinks I am not paying attention or getting agitated, he also gets agitated. Once he gets agitated, he is extremely difficult to handle. Now I am alert about this, and am careful to be attentive and comforting when he voices a concern.

Also, when I feel he is getting agitated about something that I cannot help in, I move away before his agitation increases. He usually does not get so agitated with others, perhaps because he depends more on me. If I move away before his agitation is in full-swing, he forgets about his problem and becomes normal faster.

Dementia Care Notes: What are your plans for the future, with respect to caregiving?

Nayantara: Currently, having learnt so much about how to handle him, and also having found an attendant who is satisfactory, I am comfortable with the caregiving arrangement. It gets tiring on some days, and also stressful, especially when I have to rush him to a doctor or call a doctor home because he insists that his medication is wrong, but on most days, I can handle it.

…the care takes up so much time and energy that it becomes difficult to earn enough money

One concern I have is financial. I have to not just support my parents in terms of care and errands and all that, I also have to earn enough to support them financially. But the care takes up so much time and energy that it becomes difficult to earn enough money. I have to sometimes refuse work because I need to be there for my father. Also, I work from home, and cannot always do so when he is not well, or is agitated. As his state becomes worse, I do not know how I will get the time I need to care for him while also earning enough to pay for the care he needs.

Another area of concern is my own life. My parents expect me to make them the centre of their lives. My mother always says it is my duty to always be available at home, and behaves as if going out for even a few hours is some type of neglect of my parents. In the beginning, I would listen to her, but then I realised that I need to have my own life, too. But as the care increases, more and more of my own need for variety and my own “space” is getting affected, and I am not sure how I will balance all these along with earning enough money and also taking care of my parents.

Even so, I plan to take care of them to the best of my ability, as long as I can.

Thank you, Nayantara!

[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.

Dementia Care Notes