Tag: challenging behaviour

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
Use this audio player to hear the page content

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.

Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse

Home > Posts > Interviews of Experts > Keeping persons with dementia peaceful and improving their quality of life: practical tips from a nurse
Use this audio player to hear the page content

Sheila is a registered nurse who has worked in Aged Care assisted living facilities (long-term stay homes for elders). She is currently working in an acute hospital where caring for patients with dementia is an everyday occurrence. She has interacted extensively with several dementia patients as part of her professional work. In this interview, she uses her professional experiences to share tips that can be used by family caregivers looking after persons with dementia in a home setting. [note]

Dementia Care Notes: As someone who has been working with patients with dementia, you must have often encountered upset and agitated patients. Please describe a couple of such experiences and how you and your colleagues resolved them.

Sheila: In my experience, when persons with dementia are admitted to a hospital for an acute medical condition, it is not uncommon for them to occasionally become agitated. This also happens in “aged care” facilities, where patients have moved in for long-term assisted living care. Sometimes this agitation is related to simple things like the patient not being able to find the toilet. Sometimes they know that they are not at their usual place, and hence have a desire to leave.

..a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost

Also, such agitation can happen even to patients living at home, and such a desire to “go home” (even though they are already at home) may be related to their mind being in a different chronological time in their history. For example, a woman with dementia may be living with her husband, but her mind is back in another time/in another house/ with her mum and dad. Persons with dementia don’t have the ability to reason that they are not children any more, and they do not know the difference between past and present, because the area in the brain that handles higher functioning has been damaged and lost.

In hospitals, patients often have to share a room with other patients, and they may not like the people they share the room with, or others may come and invade their space or touch their things etc. There are many challenges of managing patients with dementia in a group setting. There is a lot of activity because of people coming and going, and conversations happening around them, which their mind is trying to make sense of and often interweaving into their own thoughts. In “aged care facilities”, where we strive to create a home away from home, persons with dementia may share a room with one other person for company or have a room on their own, which is a lot nicer for the patient.

In both “aged care” facilities and hospitals, we try to keep the environment quieter and calmer to reduce episodes of agitation. We are better at creating a calm environment at “aged care” facilities, than we are in hospital where there is always a lot happening because the medical problems being treated require constant attention and action.

It really would be ideal to try and resolve health issues of patients in their own familiar surroundings with their own doctor who has a relationship with them. Home care, therefore, is preferable if the family can handle it. This is not always possible, and if patients do need admission to a hospital for some medical problem, then it is often best if the family members can spend a lot of time visiting, and during the visit, take their loved one away from the room to a quieter area for a spell.

When a patient gets agitated, the nurses try to assess the cause of the agitation. Do the patients need to go to the toilet? Do they need to have a drink or a snack? Has someone annoyed them? Is there too much activity or noise that is causing the patient’s agitation? Is it related to memories, for example, they feel they have to get to work, or go do the shopping, or go home? Are they in pain– a simple headache may lead to agitated behavior.

Once the cause is established and the patient’s basic comfort needs have been met, then if the agitation persists, we try to use distraction techniques.

We try general soothing conversation using a calm tone, low pitch and slower pace. We point out pictures in a mag or in photo albums and elicit conversation. We may ask simple questions requiring simple answers like ‘yes’ or ‘no’. We can elaborate and suggest a response, just to keep the conversation going, and we also take the stress out of them struggling to find an appropriate answer. We might make them a cup of tea and sit with them for a chat. We might get them singing or play some olden-days cheerful but gentle songs. We play simple children’s games with them, give them something to cuddle or just hold their hand stroking it gently. We might get their loved ones on the telephone to speak with them — this often helps to calm them down– the promise of a visit ‘later’. We might take them for a gentle slow paced walk away from their area.

If simple measures don’t work, we may use medication.

If patients are aggressive, we might just leave them alone in a safe environment and observe them from a distance. With time sometimes, the aggression may resolve. We may get another staff member to approach them, as sometimes for a while you become the ‘bad guy’ or the cause of their frustration.

Note that, to be effective while helping a patient, we need to know enough about them. Persons with dementia might not be able to tell us what their age is or what their profession used to be, or what their family members’ names are. To be able to care for them in an “aged care” or hospital setting, it helps enormously to have some background information when interacting with patients with dementia. This helps us manage their agitation better. Fortunately for home caregivers, they typically know enough about the patient.

Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

One important thing I’d like to emphasize is that we have to separate the person from the disease, so that we don’t lose sight of them as individuals. Each case is different and the challenges faced by the carers depend on what area of the brain is affected and what ability is lost.

Dementia Care Notes: Please share some tips about possible triggers.

Sheila: Some triggers for agitation may be needing to go to the toilet, can’t find the toilet, needing a drink or food, too much noise, pain/headache, something on T.V. if that is playing in the background, the tone of our voice, reacting to our impatience, feeling cold/or hot.

The time of the day can be a trigger, often at sunset (this is called ‘sundowners syndrome’) probably because in the past they had to get things ready for the family coming home, or had to get home by a certain time. Sundowning is managed best by medication, as they remain agitated till it gets dark.

Sometimes agitation is just related to memories that come up– ‘got to go to the bank’, ‘got to go to the shops’, ‘got to get the car fixed’, ‘got to get the crop harvested’ etc.

Another trigger may be related to pain, or being constipated, or if the symptoms have worsened over a few days it may be related to a urine infection or other health problems.

Dementia Care Notes: Sometimes, patients get into a sort of “loop” where they keep repeating a demand or remain stuck in an emotional pattern even when the “trigger” is resolved. Please suggest how to handle this.

Sheila: If the behavior is repetitive questions, first establish that they don’t need to go out to the toilet or need a drink or are free from pain. If it still persists, then you don’t have to become frustrated by feeling that you have to answer every time; it is just a behavior, develop a bit of a deaf ear. Involve them in some meaningful activity.

They may be acting repetitive because they are bored. If you are getting a meal ready, then give them a simple chore like peeling vegetables or shelling peas or setting the table(unbreakable dishes are a good idea, like thalis).

As a last resort, medication might be an option.

Dementia Care Notes: Please give some examples of changes we can make in our homes to reduce the chances of patients getting agitated, or wandering out, or harming themselves.

Sheila: Keep the temperature comfortable.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

Reduce the auditory and sensory stimulation. For example, don’t have the T.V. blaring loudly in the background, or have them in a room where children are running around fighting or playing noisily. Keep the environment calm, with adequate but not glaring lighting. The T.V. news is often distressing as it usually contains unpleasant, anxiety-producing negative content about wars or thieves etc. Nature shows or travel documentaries or children’s shows are often good distraction for a short while.

A dark mat (black or dark brown) at the front door often works to turn them back, because they can’t make out if it is a hole on the floor, or how to cross it.

A simple picture of a male/female and a toilet on the door of the toilet helps them locate the toilet if that is a problem.

You can also make some changes in the home to make it an uncluttered, safe environment, such as remove loose rugs/mats that they might trip or slip on.

Dementia Care Notes: Please suggest ways to keep patients engaged and active when we are busy with household chores and not able to sit down with patients for games or other activities. Please suggest activities that do not require continuous supervision, and would not frustrate them if they are alone.

Sheila: You generally can’t leave them alone for long unless they were accustomed to spending large amounts of time on their own listening to music or reading.

One good and simple idea is to have a rummage box, a bit like your grandmother’s sewing box, full of interesting bits of fabric, spools of thread, buttons, lace, and add other interesting things like colorful balls, small bells, costume jewellery etc. For men, you can have a box of nuts and bolts, small spanners, bits of wood, scraps of fabric etc.

Start them off picking up items and putting them on a table in front of them. Suggest they sort out the box or tidy up. Once they empty it out, they will often pack it up again— a few minutes of time is bought.

Instead of using a rummage box, we sometimes make a ‘fiddle mat’, which is easier to handle, and takes less space to play with. A fiddle mat is a small fabric place-mat to which we attach objects of the sort we may have kept in a rummage box. For example, we stitch on things like zippers, ribbon tied in a bow (which they can undo and fiddle with), colorful buttons, bells, pieces of fabric, things from their past that hold memories like bobbins( thread reels), bits of knitting or crochet etc. Patients often spend hours trying to get the objects off the mat or trying to ‘fix’ it. Such a mat would be simple to make at home, too.

Photograph of some fiddle mats. Courtesy: Sheila

Some people with dementia often rummage through drawers. They will pull out all their clothes and pack them away in bags as if getting ready to leave. You can have drawers they can rummage through without upsetting you, and just put everything back when they’ve lost interest later. Try not to scold them, or it will backfire on you and just make them agitated. I’d suggest you keep their everyday clothes in another area, and just let them have items in their drawers that won’t upset you if they mess it all up.

In the “aged care” or hospital setting, nurses will often take the patients with them when they are doing routine tasks like restocking cupboards etc. While the nurses are tackling the tasks, they give the patients something simple to hold or ask them for help with tasks like folding cloths.

You can do things like that at home, too. If you are doing laundry, have them sitting nearby (like you would have done with your kids or grandkids) and give them pegs to fiddle with or some folding of simple items. Again, don’t expect a task to be completed as they often lose their train of thought and can’t concentrate for long periods. Remember that you are giving them something to do to keep them occupied and happy while you are doing your own work; you are not giving them the task in order to get it completed perfectly.

If they are strong on their feet they can help you carry items and walk along with you.

Everyone wants to be useful. It would be pretty scary especially in the early stages of dementia to be aware that you were losing your mind and not being able to recognize everyday items and people.

Dementia Care Notes: Caregivers would love to spend quality time with the patients, but don’t always know how to. Please share what sort of joint games/ activities you have found patients enjoying with their caregivers.

Sheila: Some activities you could try:

Armchair exercises: Stand/sit in front of your loved one and ask them to mimic your exercises. Raise your arms over your head, then lower them out to the side. Raise your arms above your head, then touch your shoulders with your fingertips. Bend your head from one side to the other, up and down, side to side etc. raise your legs out in front, then back down. Rotate your ankles, and so on– you get the picture. Make up your own routine and keep it simple.

If they liked to paint when they were young, get some poster paints/crayons or colored pencils and a scrap book or children’s’ coloring-in books. Even if they were never too interested in painting, they will often participate and produce meaningful pictures.

Look through photo albums, talking about the people and places.

Make scrapbooks of comforting pictures. Patients can help cut out pictures and glue them down. When made up, these scrapbooks are good to look at and chat about. Fill the scrapbooks with large pictures of flowers, or scenery or animals and birds, or even household items or festivals. You can glue pieces of fabric down– choose colorful patterns or fabrics with texture that they can touch and feel.

In our “aged care” setting and in hospitals, our patients often like walking around the corridors looking at the pictures on the walls, pictures of sceneries and birds, or framed embroidery or tapestry. We always stop and reflect on the picture and have a gentle conversation about it.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

Watching happy old movies may be okay. They might fall asleep during it or walk away. Just be guided by what mood they are in.

If you take them for a drive, go somewhere not too stimulating. Avoid noisy shops, etc. A peaceful park would be a good option. Large family gatherings can be overwhelming after the first few hugs.

A soft toy or baby doll might be of comfort, especially to the ladies.

Stroking pets (if they are fond of pets) is comforting. You can always get friends to bring a calm pet over.

Asking family or friends to telephone or visit one at a time, also breaks up the day.

Dementia Care Notes: Please suggest which activity to try out, and when. Please tell us how to know how much activity is good, and when it becomes over-stimulation.

Sheila: Do activities when they are at their best/ most alert.

Think of how you would entertain a toddler at home. Similarly, the attention span of persons with dementia is limited and their ability is often limited, so keep games simple. Matching cards/pictures, playing snakes and ladders, try any children’s’ games and see what they are able to do. You will know they’ve had enough if they become restless or fall asleep.

Intersperse activities with walks. Walking in the garden is good. Point out flowers and trees on the way. Keep an easy social chitchat going even if they don’t reply. Ask simple questions on and off, and answer your own question if they’re having trouble answering.

It is better to have a daily routine. Get up around the same time, eat around the same time, and so on. Just swap the activities around every now and then.

Dementia Care Notes: Please share any other observations you have.

Sheila: I would suggest family carers try and get some time out for themselves every day just to go for a walk, or have coffee with a friend, or just do the shopping.

Friends are often willing to sit with your loved ones and read to them or talk with them, if they know what to do and what to say. If you are feeling stressed (just like you did when looking after your children when they were young), ask friends for help or time out. It is not dissimilar to minding a young child– just make sure they get to know your friend before you leave them alone with them.

It is not selfish to have time for yourself or admit you are feeling frustrated and stressed. You will feel a lot more loving if you can have some ‘me time’.

Your roles have swapped completely, and instead of having that parent you looked up to for advice, you now have a little child in an adult’s body. Some family members describe it as “living with a stranger”. If you are caring for your spouse, your husband or wife no longer recognizes you. It is recognized that carers go through a grieving process as the person they knew disappears for ever.

Go easy on yourselves. You are doing a wonderful service. Take time out so you can last the distance and feel good about yourself.

Thank you for this very informative set of tips, Sheila!

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

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
Use this audio player to hear the page content

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.

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

Home > Posts > Interviews with Caregivers > His condition affected every sphere of my life: a son talks of his father’s Alzheimer’s
Use this audio player to hear the page content

Varun (name changed) is a writer whose father has dementia (Alzheimer’s). For a few years, Varun helped his mother care for his father, but later, his mother decided to move with the father to their hometown because she felt he would be more comfortable there, and care would be simpler with relatives and friends around them. Below,  Varun shares his experiences and thoughts about caregiving. [note]

“Varun”, who gave this interview anonymously in November 2010, continued to ponder and process his caregiver experiences and, increasingly began sharing them with friends and caregivers. He is now open about this aspect of his life, and wishes to give his real name: “Varun” is “Eshwar Sundaresan.” We have retained the interview below as originally published, and have also added, at the bottom of this interview, the link to a blog post he made in September 2013, where he shares his personal growth derived from his experiences with his father’s dementia.

Dementia Care Notes: For the period your father was living with you, how did his condition affect your work, leisure, and social life? What sort of adjustments did you need to make to balance your other roles/ aspirations with this responsibility?

Varun: His condition affected every sphere of my life.

I don many roles in my professional life – writer, journalist, consultant, and others– and I began staying at home more than usual so that I could handle any emergency that presented itself. I inevitably lost some revenue, but I felt that my mother needed my presence in those first three years. On two occasions, I went overseas on important assignments and I was forever anxious about the home front. My mother handled him extremely well in my absence. During these overseas stints, I also had the guilty realisation that I was enjoying my father’s absence. By not seeing him and my mother suffer on a daily basis, I felt… liberated. I admonished myself for being a bad son, but I couldn’t ignore this overwhelming sense of relief flooding through me.

My leisure time and social life dipped to zero.

My leisure time and social life dipped to zero. If I felt like having a drink – and I did feel like that often – I drank at home, after everybody had gone to sleep. Interactions with friends happened through my laptop. Happiness moved online. I decided not to have any romantic relationships in my life for many reasons. One, I wasn’t in the frame of mind to actually contemplate romance. Two, I didn’t want to complicate my life further. Three, I knew that a special new person would draw me away from my immediate responsibilities.

The only positive development, if I could call it that, was that my father’s condition inspired me to write a short story which won an award.

Dementia Care Notes: Can you share a few challenging situations you faced while caring for your father? Can you tell us how you handled them?

Varun: Almost all the day-to-day problems we face with my father revolve around smoking. Around two years ago, I and my mother decided to curb his habit and we’re still facing the consequences of that decision.

Ever since we rationed his cigarettes – to around 5 a day – he began stealing from home to fund his habit. No matter how well we hid our wallets and purses, he dug them out. We soon realised that in this one aspect – his desire to smoke – his resourcefulness exceeded that of a “normal” person. On those days when he didn’t find any money, he began buying packets from the local shopkeeper on loan. Of course, once the nicotine entered his bloodstream, he had no recollection whatsoever of having asked for the loan. On one occasion, he willingly accompanied me to the shop and blasted the shopkeeper for lying through his teeth. ‘Everybody’s a crook,’ he thundered. Of course, the next evening, he was back at the shop, begging for cigarettes.

Once the loan-route was sealed off, he began scanning the roads for cigarette butts. If he found a butt that could offer a single drag, he’d pick it up – no matter how filthy it was – and smoke it. This new development worried us no end. We could somehow endure the social stigma of such behavior, but what if he were to catch an infection from a cigarette butt?

We temporarily reverted to his earlier quota of cigarettes, but he did not give up the practice of picking up butts from the road. This has now become an enduring ritual and we have no idea how to deal with it.

Now, he’s acutely aware of when he will be given a cigarette – like, after the morning coffee, after lunch, after the evening tea and then after dinner. So meals and beverages have become harbingers of nicotine for him. He wants to rush through them so that he can get his cigarette. Even the slightest delay in placing a cigarette in his hands provokes extreme anger. At all other times, he’s meek as a kitten.

Our only hope is that memory – which has been reduced to less than a dozen sketchy details in his mind – one day refuses to remind him that he’s a smoker.

From the above account, you may have also realised that he has become schizophrenic. One moment, his mind is plotting its way to a cigarette and the very next, he believes himself to be innocent as a lamb. At such times, he accuses us of being callous. ‘Nobody understands me,’ he cries.

He’s almost always anxious and, as is common, he keeps repeating his questions ad nauseum. When he’s visiting his sister, he assumes her to be his daughter (my sister) and keeps fretting that his grandchildren have not returned home. All we can do is calmly tell him that his grandchildren are safe and happy in another city and he has no reason to worry.

Dementia Care Notes: Often, spouses find it difficult to move from a partner role to a carer role. Can you share how your mother handled this transition? How do you think a child can support a parent who is caregiving the other parent? Any advice, looking back?

Varun: My mother is like the Rock of Gibraltar. She’s a natural caregiver. Having spent her youth in a joint family that expected her to be the dutiful daughter-in-law, she’s used to taking care of the smallest needs of a large group of people. So she barely flinched during the transition from the role of a partner to that of a caregiver.

She was, of course, shaken by the first diagnosis of dementia. During that time, and later during particularly stressful times, I just offered her a shoulder to cry on. She didn’t expect much more than that. Other than that, I interfaced with doctors and informed her of time-tested techniques from the medical world. Whenever she resisted the proper caregiving technique – because it went against her instincts – I persisted with my talks till she accepted the technique. For instance, she became quite defensive of my father when someone wasn’t empathetic enough to his condition. Alternatively, she’d try to reason with my father to behave more rationally. In such times, I had to ask her to let him be. People suffering from dementia do not understand logic. But they do understand a hug, a squeeze of the hand, a caress. My father’s especially fond of hugs. He doesn’t care who gives it or why it is being given. He responds very positively to that form of affection. So we try and give that to him. As much as possible.

I think that in today’s day and age, the child can help the parent the most by:

  • Being there, as much as possible.
  • Reassuring her that society’s perceptions does not matter two hoots. My generation finds it easier to accept this premise and I can, therefore, sell the idea to my mother.
  • Exploit the power of the internet to keep her informed.
  • Remind her that she has the resilience required to undertake this super challenge.

If I were offered the twisted choice – as to which of my parents should be affected by this condition – I’d choose my father. Because women have an infinitely larger capacity to handle pain than men. So my mother can, all said and done, take much better care of my father than vice-versa.

Dementia Care Notes: Were there things you considered or did to improve your father’s quality of life? Did it seem possible? Any tips?

Varun: My father was an ‘extra-strong’ personality in his prime. And his assertive attitude survived the advent of the disease. I realised very soon that there was no way he was going to turn obedient. We had to accept his wishes, whether we liked it or not. All we could do was to make sure that he wouldn’t harm himself (he isn’t the kind of person who’d harm others).

So these were the decisions I took:

  1. He insisted on going to the temple every morning, unsupervised. We knew it was to scout for cigarette butts on the road. And to dip into the priest’s plate for a coin or two. But if he was denied this outing, he became furious. So I decided that he would visit the temple, come what may. My mother, when she visited the temple, dropped enough coins on the plate to compensate for the priest”s and the Lord’s loss. Once he returned from the temple, he was calm. The rest of the morning and afternoon passed like a hazy summery dream.
  2. In the evening, he’d again want to go to the park for a brisk walk – and I mean brisk. Even today, he sets a Gandhian pace for the rest of us. We were reassured by the fact that the park was quite close to home. And the locality we lived in had become familiar with him and his ways. Like the kind shopkeeper, who never took offence to his outbursts, the people in the neighbourhood would, we felt, return him safe to our home in case he got lost. But he never did. In fact, he self-regulated his walks. During the first year, he would walk into distant neighbourhoods, sometimes through thick traffic. But as soon as he realised that he was losing his bearings, he restricted his walks to shorter distances. Soon, his walks began and ended in the local park. This self-regulation, I think, was put in place by his fear of getting lost. I, for one, did not want him to vegetate at home and lose his physical health – which, touchwood, is still rosy, thanks to his penchant for walking. So I decided that there would be no restrictions on his walking and I think it’s one of the best decisions we’ve taken.
  3. Upon a doctor’s advice, I prepared a photo album for him, tagging each photo with detailed annotations and dates. We kept this album within his reach. He’d open it every day and pore through it, as if he were seeing it for the first time.
  4. I took him and my mother for a workshop held by my city’s ARDSI chapter, a magnificent organization that helps families like mine. At that workshop, my mother listened to experts and other caregivers. Knowing that we’re not alone in this situation helped her a lot. She also got plenty of practical tips on how to handle aggression, repetitive questions etc.

  5. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

    We consulted various doctors regarding his medication. I had a feeling that Donep (and other brand names of the same compound) was not really helping him. If anything, it was making him more aggressive. Some doctors insisted that better results would be achieved over time. But even after years, the medicine achieved nothing productive. I consulted another doctor and with her blessings, stopped Donep on a temporary basis. We found that his mood actually improved. He was a little more lucid and a little less worked up. I suppose these drugs do have different effects on different people. Some other victim’s reaction to the withdrawal of Donep might be entirely different. My suggestion is to map behavioral patterns with the times when a particular medication was initiated. You might make a discovery.

Dementia Care Notes: Your mother finally moved along with your father to their village. What sort of pros and cons were considered while making  this move?

Varun: Well, my mother did not allow me to consider pros and cons. She was quite convinced about the move. I wasn’t. So I requested the professionals from my city’s ARDSI chapter to pay a home visit and talk to her. They did and realised that she had made up her mind. So they advised her on caregiving and also to report any discrepancy in my father’s behavior at the earliest.

There are many reasons behind my mother’s relocation. I can speculate on and/or verify a few of them:

  1. She wants to be closer to the temples she loves to visit.
  2. She wants me to rethink my own life and, perhaps, find myself a life partner. She’s come to believe that this cannot happen with them over here.
  3. She thinks that my aunt – who lives a stone’s throw away from her new residence – will offer enough emotional and physical support in case of an emergency.
  4. She feels that this is her cross to bear. And hers alone.

I have never been convinced about this move. A room in my home remains empty, awaiting their return. For the time being, I had to restrict myself to a few basic parameters:

  • Their new residence is a condo which has excellent security arrangements.
  • Around 70% of the residents of the condo are retired folks who offer great company to my mother.
  • The locality is small and cosy. Everybody knows everybody. Even auto rickshaw drivers will take you home without asking for the address. It’s that easy to get that familiar with the others. It’s the kind of place that will accept my father’s idiosyncrasies and even celebrate them!

For now, that place is their world. And I’ve made my peace with it.

Dementia Care Notes: Are there any problems being faced because your parents are now in a village? How are these being handled?

Varun: As of now, there are no logistical and day-to-day problems. The locality has accepted my parents and there’s home delivery for everything.

But my parents are currently travelling in Gujarat where my father has, on one occasion, displayed mild violence because he was denied a cigarette on time. This has made me anxious for my mother. I wonder whether she should be allowed to stay all alone with my father. What if he becomes more aggressive? So my plan is to reassess their situation once they return to our hometown and, maybe, veto my mother’s decision to stay on their own.

I fear that, at the moment, my mother’s desires are in opposition with my father’s. My mother wants and deserves a break every now and then. From time immemorial, her idea of a break has been to travel to a close relative’s home. She wants to continue this practice. But, of course, every new place adds a dimension of disorientation to my father’s mind. My mother is still young and she certainly must lead as full a life as possible. Knowing this, I’d like to explore day care or fulltime care options for my father. But my mother is quite averse to this suggestion because she feels that my father will collapse in her absence. She has circumstantial evidence to back this claim. If he doesn’t have her in his sight for more than a few minutes, he panics. So my mother is even more sceptical about allowing others to take care of my father.

A qualified doctor friend recently told me that in these cases, the caregiver becomes as dependent on the victim as vice-versa. The caregiver begins to define her own life on the victim’s condition. Without the victim’s dependence, she herself is lost. So I must watch out for this co-dependence angle.

…my mother’s state of mind must remain the most important consideration in whatever decision I take.

Having said that, I know that my mother’s state of mind must remain the most important consideration in whatever decision I take. I cannot unilaterally take a decision based on rational thought. I must make sure that she’s onboard with the decision, whatever that is.

In all these situations, I become painfully aware that I’m, after all, a secondary or tertiary caregiver. The brunt of the ailment is borne and best understood by the primary caregiver alone. I cannot be the referee in this tug-of-war against Alzheimer’s.

Dementia Care Notes: Have you and your family considered how you will handle care when your father deteriorates? Can you share some criteria/ decisions on this?

Varun: I’m quite clear that, when my father is physically incapacitated, we must have a fulltime nurse to assist my mother. Perhaps the nurse will be required before that stage. I’m mentally preparing myself for adult diapers, bedpans, a special bed, bedsores, the smell of disinfectant in the air and the constant anxiety all these things introduce to a household.

All I can do is prepare financially for this era. I’m utilising my father’s absence to undertake lucrative assignments that will fund these times.

It’s amazing how Alzheimer’s teaches one to walk the invisible line between emotions and pragmatism.

Ideally, I’d like my mother to rediscover the joy of life at her age. Maybe explore hitherto-unexplored opportunities. She doesn’t have to be chained to his bed till he passes on. I fear that, when my father does pass on, she’d be left rudderless. So shouldn’t she find parallel meanings in life right now?

…but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

But, as I said before, I cannot make these decisions on her behalf. I’ll continue to talk to her about these things, but the final decision on my father’s caregiving model will be my mother’s alone. I’ll give myself no option but to support her.

Dementia Care Notes: Overall, based on what you have seen so far, is there something you would like to share with caregivers who are just starting their caregiving journey?

Varun: To the primary caregivers, I’d say: don’t judge your loved one who’s suffering untold inner turmoil. Let him or her be. You’ll rue the fact that he is a shell of the splendid human being he once was. All the good traits will vaporise and all the vices will amplify. Don’t remember this shell. Remember the past. Remember that he was a great husband/father (or mother/wife).

To the children of the primary caregivers, I’d say: put aside your otherwise perfect life when you address this condition. If your spouse is not empathetic about your suffering parents, then find a way to balance the present and the past. Give your parents a life they deserve while not compromising the future of your marriage or your kids. The modern spouse cannot tolerate loss of control over the TV remote. So please don’t get worked up over his or her inability to tolerate the loss of peace. We live in a transitioning society. It’s up to us find the middle path. Our children may or may not turn up at our funerals. But we must delay the funerals of our parents. More than that, we must make their last mile as happy and memorable as we can.

Thank you, Varun.

Eshwar Sundaresan, writer, talks openly about his father’s dementia and about caregiving, and wishes to acknowledge his identity as “Varun” above. In September 2013, Eshwar wrote a detailed blog entry sharing more related experiences and thoughts (click here: They understand only love Opens in new window); this blog entry helps us appreciate how he has integrated and grown because of his father’s dementia and the related caregiving environment in the three years since the above interview.

Thank you, Eshwar!

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

Note. This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of persons with dementia, their families, the care environment, or professionals. Every patient, every family is different and so is their experience.

Care in a dementia day care centre: a social worker explains

Home > Posts > Interviews of Experts > Care in a dementia day care centre: a social worker explains
Use this audio player to hear the page content

Jincy Shiju is a social worker at Dementia Day Care Centre, Bangalore (a service run by Nightingales Medical Trust).  Currently, the centre services six dementia patients for day-time care on weekdays. The activities of ARDSI Bangalore Chapter are also carried out through the Centre. [note]

Dementia Care Notes: Please describe the steps you follow to admit a patient for the day care facility.

Jincy: When a client’s relatives approach us for day care facility, we first ask them to get the client assessed by our doctor. During this assessment, our doctor checks the client’s current status and identifies which areas to focus on during rehabilitation and care. We next gather information about the client from the client’s family, using our “client social profile” format, and we sit with the family to get clarifications and additional data about the client.

At the end of this information-gathering, and before we take in the client for actual care, we are therefore well informed about the client’s personal and social history. For example, we know:

  • Client’s personal history, such as preferred name, school/ education, occupation, cities lived in, languages known, family details (such as spouse, children, grandchildren and others), friends/ neighbours, pets.
  • Special memories and anecdotes.
  • Social involvement, such as whether the client likes to socialize, social activities enjoyed, etc.
  • Emotional habits, such as how the client expresses emotions such as joy, sorrow, does the client like to be touched/ hugged, how the client expresses frustration.
  • Religious beliefs and habits.
  • Behavior challenges.
  • Routine the client is used to.
  • Food habits, likes and dislikes.
  • Hobbies, activities that the client likes or may want to try.
  • Whether the client likes intellectual activities.

Dementia Care Notes: How do you handle new patients when they are admitted?

Jincy: We use a gradual approach to help the client adjust to the day care facility and staff.

The first day, the client stays with us only for a few hours, and a relative remains present.

Over the next few days, we increase the hours of the client’s stay with us. The relative remains present at the facility but sits in a different room, not visible to the client. The client is handled by our staff without the help of the relative. We use this adjustment period to get more comfortable about the client’s habits and likes and dislikes, and ask the relative for more data as we need it. The client, too, starts adjusting to our staff and facility.

Usually, after a few days, we are able to care for the client from morning to evening, and the relative no longer needs to be available for consulting.

Dementia Care Notes: Do you provide food? Are the patients comfortable eating the food you provide?

Jincy: Some families send food with the clients, and we heat and serve it at mealtimes. Others are happy to let us provide food to the client.

Dementia Care Notes: How well do the patients adjust to the day care?

Jincy: Some clients show better behavior here as compared to the agitation they show at home. Others seem agitated and restless and keep saying they want to go home. We usually manage to engage the clients in various interesting activities, and distract them from restlessness.

Sometimes, we do face problems such as restless clients trying to wander, or clients getting angry and aggressive.

Dementia Care Notes: Are some clients reluctant to come for day care?

Jincy: Yes, some clients tell their families that they do not want to come. Sometimes they even refuse to get out of the car and enter the facility. We have to persuade them. But once they enter the facility, they seem happy enough and spend the day peacefully.

Dementia Care Notes: Can you give some examples of how you handle challenging behavior?

Jincy: One of the problems we face is of wandering. Clients get restless and want to go out.

We first try to calm the clients by talking to them. If they want to walk around, we stay close with them or follow them, or we take them for a walk in our garden or to the park nearby. We do not stop them from walking, but make sure they are accompanied. As soon as they seem calmer, we guide them back to the facility.

Sometimes, we also stop wandering by locking the main door, so that they can only wander within the facility. If asked, we pretend that we have misplaced the key, or that the key is with a staff member who is not present and will be back shortly. We then try to distract the client.

Some clients insist they want to go back home. We never refuse this need, but let them know that their family will take some time to come. We may pretend that we have called the family, and that the family members are taking time because of a traffic jam. Or that our van cannot drop the client home back right now because there is no petrol or the driver has gone for lunch. Often, reassuring the clients that they will soon be going back is enough to calm them down for some time. We also try to distract them by sending along a different staff member to talk to them.

On a few occasions, when clients seem extremely restless, we may have to request the family member to come. We once had a patient who tried to climb out of the facility and was extremely agitated. After the family member arrived, however, he was very calm and it was difficult to believe that he had been so agitated just a short while ago.

Dementia Care Notes: So, in some situations, you need to call the family during the day, to ask them to take the patient home?

Jincy: This may happen for medical reasons, or extreme behavior challenges, but is not common.

In case of medical problems, in addition to immediately informing the client’s family, we also call in doctors from the neighbouring hospital to assess the client’s problem and advise us. Sometimes, the client is too unwell to stay at the day care, for example, he/ she may be having a severe asthmatic attack. Then we ask the family to take them home or to a hospital.

Sometimes, when the client is very agitated and insists on family presence, and when we are not able to calm the patient, we inform the family and request some member to come. In such cases, the client usually calms down on seeing the family member, and the family member is able to then leave. Or the family member takes the client home for the day.

Dementia Care Notes: How often do you need to call in the family to ask them to come or take the patient away?

Jincy: We have six clients currently. We usually do not need to call any of their families for help more than once or twice a month.

Dementia Care Notes: How often do you communicate with the family regarding the patient’s status and activities?

Jincy: Every day. We have a register in which we note down the daily report for a client. This is shown to the family every day by the driver who drops the client home at the end. The family signs an acknowledgement for having read this, and also uses the same register to note their comments and to inform us of any change in the client’s status or of any other problem.

In addition to this, family members call us whenever they need to tell us anything, and we also call them in case we need more information, or are facing a problem.

Dementia Care Notes: You have patients from different regions of India. Is language a problem at times?

Jincy: Usually, we are able to understand the client’s language because we have staff members who know the language, or are able to guess the meaning by asking questions. Once in a while, we face problems with a particular word; in such a case, we call the family to find out.

One such incident was when a client kept saying “peshaab” and we did not know what it meant, and were unable to guess. The client seemed insistent and agitated, and soiled himself by the time we managed to contact the family and understand that peshaab means urine.

Usually, however, families inform us of the words the client will use and we are prepared for handling the client.

Dementia Care Notes: Under which situations do you refuse to accept a patient for daycare?

Jincy: Currently, we do not accept bed-ridden patients for day care. However, we have another facility, Nightingales Centre for Ageing and Alzheimer’s, that accepts bed-ridden patients for short and long stay.

Dementia Care Notes: Are some of the patients incontinent? Do you accept such patients? How do you handle incontinence?

Jincy: Most of our clients are able to tell us when they want to go to the toilet. We also keep watching them for any restlessness. In any case, we take them every hour or so, so that there is less chance of accidents.

In case of accidents, we clean the clients and change their clothes. We have extra sets of clothes for such accidents.

Some clients, who are more incontinent, use diapers.

Dementia Care Notes: What is the ratio of patient to nurses right now at the day care centre?

Jincy: The ratio is one nursing aide to 3 patients.  The nursing aides are trained staff who help them with various activities, and two social workers who provide training and guidance and make sure that the care is being given properly. There is also one housekeeper and one driver.

In addition to these persons, we also often have volunteers and counsellors who come in for additional support.

Dementia Care Notes: What sort of activities do the patients spend their time on?

Jincy: In addition to the normal activities like walking, going to the toilet, and eating, we have activities that clients enjoy, such as games. Our staff spends time talking to the clients if the client likes it. Sometimes, we arrange for programs like pet therapy and art therapy. We also take clients for outings. The type of activity and the time spent on it depends on the client’s ability and interest.

Thank you, Jincy!

The day care centre described above is no longer operational, you can check our city wise resource pages for what is currently available in various cities.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Dementia Care Notes