She would simply hold on to me for support: a husband cares for a wife with dementia

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Ramana Rajgopaul, a successful professional manager, gave up his lucrative career to become the caregiver for his wife after multiple cerebral and cardiac infarcts. His wife has since passed away. In this interview, he describes his experiences and emotions as his wife’s caregiver. [note]

Dementia Care Notes: Please describe the symptoms and state of your wife, which led you to give up your career.

(from left) Ramana’s father, Ramana’s wife, and Ramana

Ramana: My wife’s short term and long term memories were shot to pieces. Both would work some times, but most times, they would not. She could not recollect names, places or events and if some one explained, she would pretend to understand, but it was just that, a pretense. The only two people she recognized and was comfortable with were our son and me and here too, the past had no meaning or resonance for her. Simple things like taking medicines and prescribed food were a problem because she would not remember if she had taken or not. Anything or place out of the familiar would result in panic attacks for her and if either my son or I was not around, she would simply go into a shell and it would take hours to come out of that shell.

On a few occasions, she went out to walk on her own, when I was not around, and even within our own locality, she got lost. Luckily on all occasions, people who recognized her brought her safely home.

Although our house is in Pune, I was at that time pursuing my career in the South, while my son and daughter-in-law lived in Pune. My wife found living in the South with me difficult because she simply could not manage the language and did not like being alone at home when I used to work 10 to 12 hours a day. She had therefore returned to Pune to be in her own home and live with her son and daughter-in-law. I would come to Pune whenever I could, for weekends or holidays, or because of emergencies.

When, after my wife’s infarcts, it became clear that she needed more care, we tried using live-in paid help for her, but she rejected this caregiving alternative by simply withdrawing into her shell.

When, after my wife’s infarcts, it became clear that she needed more care, we tried using live-in paid help for her, but she rejected this caregiving alternative by simply withdrawing into her shell and I decided to wind up my bachelor set-up in the South and return to Pune to be with her. I could not leave the care entirely to my son as he had his own career and marriage to manage.

Dementia Care Notes: How did you phase out of your career into this caregiver role? What was the response/ reaction of your colleagues, friends, and relatives? How did you cope with it?

Ramana: My employer was a friend who knew the problem and had met her on a number of occasions. He was a great help when she had her first infarcts and knew the problem. When I finally had to quit, I simply had to explain to him the situation I found during my brief weekend visit to Pune. Being a man of great compassion, he reduced the notice period and relieved me in two weeks after I handed over to a selected relative of his. I played a consulting role on the telephone for four months afterwards for which, too, he made generous payments.

Dementia Care Notes: How did you equip yourself for this caregiving role? Please describe the sort of work involved, and how it changed across the years, as she deteriorated.

Ramana: There was nothing that I would have NOT done for her.

I simply asked her cardiologist and neurologist what I could expect and what I would need to do and did that. Luckily for me, her problems were essentially to do with her heart and there was no further deterioration in her physical or mental condition. I just had to assist her in medically managing her condition.

Caregiving involved seeing that all possible comforts were provided to her. For example:

  • Seeing that there was always hot water available in the bathrooms, beds made and her clothes laundered and shelved, wholesome and nutritious food provided on time, etc.
  • Seeing to proper administration of medicines in the correct dosage and at specified times.
  • Arranging for, and accompanying her to pathology tests and doctors’ appointments. Arranging to fill in prescriptions.  
  • Accompanying her for, and urging her to do physical exercise as advised by the physicians.
  • Answering and making phone calls to friends and relatives who wished to keep in touch with her.
  • Seeing that she did not face any embarrassment due to lapses in memory, particularly with respect to names and places when people visited.

In short, I did everything I felt was needed to keep her healthy and happy.

Dementia Care Notes: Was your wife aware of the nature of her problem, and how it would progress? How did she respond to it?

Ramana: On some occasions, she would be aware that she had problems with both her physical and mental condition. On others, she would be confused. And so, she simply allowed me to run her life. I do not think that she ever thought that her condition would deteriorate. When she could not walk on her own, she would simply hold on to me for support and finish her quota of walk.

I believe that she knew that she was totally dependent on me but that did not bother her, except when I was not around.

Dementia Care Notes: Did you face situations where the ignorance of others caused pain or embarrassment to you or your wife?

I was always around for her to avoid the embarrassments…

Ramana: Fortunately for me, the people who mattered in our lives, knew that there was some problem and treated her with the same affection and regard that they had for her before her infarcts. I was always around for her to avoid the embarrassments anyway.

Dementia Care Notes: Please share some instances of isolation you faced because of either the caregiving work, or poor understanding of your situation by others. How did you handle it?

Ramana: I had to completely overhaul my life style. I had to give up going to my club, going out with friends or visiting them, weekend outings to nearby hill stations etc. That was the most difficult part as I was a gregarious bon vivant. Friends did not understand then, nor have they understood till date, as I used that period to develop a more peaceful and quieter, less expensive lifestyle. That period also saw me develop further into my spiritual pursuits and I am better off for that.

Dementia Care Notes: Seeing a spouse lose her memories is sometimes likened to losing a part of yourself, and your dreams of a happy retired life together. What has been the emotional impact of it on you?

Ramana: Our retirement plan was to travel within and outside India at first and then to retire to a small farm-house. Naturally, all that had to be given up as she was simply unwilling to get out of her immediate comfort zone/familiar environment. Many things that I could not have shared with her during my hectic career life had to be permanently kept away from her as she simply could not relate to any of my stories from those experiences. This was frustrating, as I could not make my peace with her for the years that I was away while she ran the household and our family affairs.

Today, without her, I simply do not have the motivation to revive those plans. I have also taken on a new caregiving responsibility for my father and so, it looks like that the plans have to be permanently given up. I do not think that there will be any great emotional impact on me because of that, as I am a different person now than the person I was before my wife had her infarcts.

Dementia Care Notes: As your wife deteriorated, were there some moments when the measure of the loss hit you particularly hard?

Ramana: In all honesty, no. I enjoyed our time together after all those years of spending so little time with her and was content to be around for her. As I had said earlier, I changed.

Dementia Care Notes: Please share some special, tender moments when you connected deeply with her in spite of her dementia.

Ramana: Every evening we used to go for a walk to the local park. We would sit together and our friends would come and sit with us after their walks and we used to have a lot of fun at each other’s expense. While mostly she would not understand what was going on, there were occasions when she would participate and those were special moments for all of us. Escorting her to the park, walking along with her during her walk for exercise, and returning with her back home, were all tender moments. They were very fulfilling and enriching.

Dementia Care Notes: When you were actively caregiving for your wife, what sort of mechanisms did you use to stay physically and emotionally fit for the caregiving?

Ramana: Daily Yogabhyas and meditation. I practice Vipassana and these two activities kept me physically and mentally fit. As odd as it may sound, my daily prayer sessions helped too.

Dementia Care Notes: You handled your wife’s caregiving along with other family responsibilities, especially the care of your father. How did you balance and prioritize these?

Ramana: My father came to stay with us just four months before I lost my wife. The only problem was that she often could not recognize who he was. When my father came to live with us, my wife and I moved out of our ground-floor bedroom to an old office room, so that my father could live on the ground floor in our old bedroom. My wife found this very confusing, especially as she often forgot who he was.

My father was and continues to be quite physically independent and so I did not have to do much for him till his fall and fracture much later. Problems of prioritization between care for my father and my wife never arose as my father understood my priorities quite well. It is a sense of déjà vu now with my father’s memory playing tricks on him!

Dementia Care Notes: When your wife passed away in March 2009, your caregiver role ended suddenly, and you suffered the loss of a life partner. How did this impact you, and how did you emerge from it?

Ramana: I am still living with that impact.

I knew my wife as a friend for eight years before our marriage and we were married for forty years. We had a very strong relationship and suddenly to be without that anchor as it were, was initially quite difficult. My siblings, nephews and nieces, grand nephews and nieces, my wife’s cousins, all came at different times to, shall we say, cheer me up and get me back to normal.

I have a major surgery scheduled a few weeks from now. As my big surgery problems loom ahead, I remember that, on all four occasions earlier when I needed surgery, my wife was by my side during the operations while simultaneously running our household. I will miss that this time around.

I have got over the loss but I can’t say that I do not miss her.

Dementia Care Notes: Looking back now, what advice do you have for other spouse caregivers?

Ramana: It has been my experience that each case is different. The extent of the dementia has different ramifications on the depth of care giving.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

I was fortunate in that my experience was less of a strain for us as my wife was not violent or totally helpless or difficult. So, the advice that I can give is likely to be related to experiences similar to mine, and that would be to develop, if one does not already have it, a sense of humour and not to take oneself too seriously.

I learnt to handle ‘whymeitis’ by spiritual pursuits and discussions with my Vedanta Guru. It helped me, but I do not know if I could give that as an advice to all care givers.

Dementia Care Notes: What is your wish-list about changes around you, in people, in society, in employment environments, to better support persons thrust into a caregiving role for a person with dementia?

Ramana: Only one item on the list. Development of support groups everywhere like AA, NA, Alanon etc., for caregivers. Perhaps something like Caregivers Anonymous!

I am available 24/7 to any caregiver, who wants a sounding board, a sympathetic ear, counsel, and in the case of people in Pune, and/or any other help that I can render. I would consider it a privilege to be of help to other caregivers rather than treat them as invaders of my privacy.

I can be contacted via email – rrajgopaul@gmail.com.

Thank you for sharing your inspiring story, Ramana!

[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.

A family recognizes dementia and adjusts for it: a social worker narrates her family’s story

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Bharathi, 57 years old, has a degree in psychology and is a social worker who volunteers some time with dementia patients. When her 83 year old aunt started behaving strangely, she realized that the symptoms could be dementia, and gave the family brochures and literature on dementia. This led to a proper diagnosis and the family was able to learn how to help the aunt, who is now much better and happier. In this interview, Bharathi shares her story. [note]

Dementia Care Notes: Please share the salient events prior to the diagnosis.

Bharathi: My aunt and her family used to live in Vizag before they moved to Bangalore. My aunt is 83 years old. Her husband (my uncle) is 90 and very active and articulate (he writes stories). They live with their eldest daughter (60 years old) and her husband, who is 75 years old. Another daughter is in the USA.

Around eight years ago, Aunty lost her son, and this was a very big shock to her. She also started becoming forgetful, for example she would forget to switch off the gas. She put on weight. All this was diagnosed as a thyroid problem, and doctors said that the problem had probably been there for a long time. However, her forgetfulness continued even after treatment.

After coming to Bangalore, Aunty seemed worse. She fell down twice on her way to the bathroom one day. She was unable to get up the second time and became bedridden after that. Doctors who checked her said it was “old age” and that she might have suffered from a stroke or something like that.

Aunty deteriorated rapidly after that. Though she talked about old times, she sounded confused and was often unable to express her needs. She ripped off her diapers and soiled herself often. When her husband tried to clean her, she would get agitated. She also developed bedsores.

Aunty often shouted in those days, for example, shouting at Uncle because he was watching TV. She could not sleep at night and remained in an agitated state. Her voice also sounded different and more commanding, which alarmed and worried the family.

Another thing: Aunty could no longer tell what she was eating or drinking. For example, she could not make out whether she was having tea or coffee, and even immediately after a meal, she could not say what she had eaten.

The family was puzzled and worried by all this, and did not know what could have gone wrong. They felt she had totally changed, and suspected a mental problem.

I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia.

As my volunteer work included dementia patients, I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia. When they read what I had given, they also felt that this could be dementia, and decided to consult doctors to get a diagnosis.

Dementia Care Notes: Your aunt was placed under observation after the diagnosis, right?

Bharathi: By the time Aunty was diagnosed, the family was quite overwhelmed by the situation. They knew they would have to adjust many things to fit this diagnosis. Aunty had bedsores, she often shouted, she would not lie straight, and it was very difficult to clean and bathe her. They decided to place her under observation for a month at a specialized ageing and dementia centre where experts could observe her and help her improve while the family made the required adjustments.

Aunty’s younger daughter, based in the USA, was familiar with dementia. She came back to India to help. While Aunty was under observation, the family started understanding more about dementia. They learnt how they could communicate with Aunty and help her.

Uncle felt very lonely at home without Aunty when she was under observation. He felt he had no one left at home with whom he could share things. After so many years of living together, he was used to talking to her and he missed her a lot. But the family needed this time to adjust to this new phase.

Dementia Care Notes: How did the observation phase change your aunt?

Bharathi: Aunty had improved a lot when she returned home after the one month under observation.

One very important part was that she had stopped shouting. This had been a major problem earlier.

Another thing was that she was no longer ripping off her diaper, which made it much easier for the family to ensure that she remained clean and hygienic.

Her bedsores had also healed, and she was able to lie straight in bed.

Aunty also seemed much more cheerful and talkative, and was no longer agitated.

… when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month.

One thing, though. At the end of the one month stay, when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month. She has told us that she wants to stay at home with all of us around her. I think one reason she is more open to talk and listen is that she doesn’t want to be sent to a hospital. The very sound of an ambulance frightens her.

Dementia Care Notes: How is care given at home now?

Bharathi: The family, having understood that she has dementia, is now fully set up to help her.

For example, they now have a hospital bed for her, so that she can be made to sit up for meals and can also be lowered easily. They have put an air bed to prevent bedsores. They also have a nurse who comes during the day to bathe and clean Aunty and help in other chores.

In addition to this, the family has made a lot of effort to understand what Aunty is going through. They have adjusted their way of talking to her to take her dementia into account, and they have also learned how to help her. The daughter from USA is also working hard to see if she can help her mother improve.

One thing to remember here is that everyone in this house is a senior citizen. Aunty is 83, and her husband is 90. Her eldest daughter is herself 60 and caring for a bed-ridden patient is tiring for her. The eldest daughter’s husband is 75, and needs physiotherapy because of back problems. In spite of this, everyone is managing to take good care of Aunty now that they understand the problem.

Dementia Care Notes: How is your aunt doing now?

Bharathi: Aunty is doing really well now. She talks a lot about old times. Sometimes, she sings old songs. She also forgets a lot, but she admits that she is forgetting things, and sometimes asks when she will get better. She no longer gets angry or agitated, and is therefore easier to take care of.

Aunty loves to have her family around.

She still has problems in the way she understands the people around her. For example, she calls her daughters “akka” as if they are her sisters. She calls her husband “father”, but when she is asking us where he is, she will say, “Where is your uncle?” She is also not able to recognize the photograph of the son who died eight years ago.

But though she mixes up relationships sometimes, she knows we are all family.

But though she mixes up relationships sometimes, she knows we are all family. She recognizes us when prompted, and sometimes even otherwise. She particularly enjoys seeing her grandchildren. When people visit, she acts like a hostess and tells her family members to give them something to eat.

Aunty wants to get better. Currently, she is unable to wear specs and is lying down most of the time, but maybe, if she improves, we will be able to make her wear her spectacles and she will be able to see people and things better, and even read again. We are hoping this will be possible.

Another thing we are trying is to ensure that she does not have to cope with too many changes around her. It is possible that the move to Bangalore was a setback for her because of so many changes.

Overall, Aunty seems quite happy and positive, and the family members understand what she is going through and have changed their way of doing things so that she is comfortable and happy.

Thank you for sharing, Bharathi!

[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.

When you are in the rut of things you can’t think: a doctor-caregiver shares

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Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility. [note]

Dementia Care Notes: Could you give us background information about the case and the sequence of events?

Vidya: Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.

Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.

Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.

As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.

But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own and we all decided to get some home-help. My mother employed a ‘nurse’ from a well-known organization in Kerala. With this, we started a phase where we used a number of such ‘nurses’ to care for Granny.

These nurses were not actually trained in nursing, so to say. They were just young girls in need of a job, who had taken on the task of caring for an ill person as best as they could, for a fee. Some of them had previous experience elsewhere. Some were good at heart, some were hygienic, others were not. We had to manage with what we got as we had no other source of home help.

After we began using home help, Granny continued to stay at my aunt’s place for a couple of years and then moved to my mother’s house for roughly a year and a half with the ‘nurse’.

The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems.

One major problem was that the ‘nurse’ would suddenly leave and go home for reasons best known to herself, or because she had finished her tenure (of max. 5-6 months at a time ). During the absence of the nurse, my aunt (or my mother) had to manage Granny’s care on their own. That was quite a task as Granny was a heavy woman. I lived separately, and though close by, I could only help sometimes with the care. The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems. Granny’s third and youngest daughter, (she was in her fifties) lived in another state; she would come many times to help her sisters with the care especially during the absence of the nurse.

Granny (along with the nurse) was next moved to the city where her third daughter lived. After living for a while with this daughter, Granny was moved to a long-term stay and care facility for older people where she passed away after three years.

Dementia Care Notes: Can you look back at the years between the possible onset of dementia of your grandmother and the point when it was formally diagnosed, and share with us what you think can be done to facilitate early diagnosis?

Vidya: The best possible thing to do is to keep evaluating the person’s health from time to time with proper assessment by qualified doctors and based on that , necessary investigations.

One could then try and control any imbalance of substances for instance-lipids. Or rule out other things like thyroid problems. There can be many things that need to be looked into. A proper control of various parameters could possibly slow the progress of the condition.

There are different causes of dementia as well that need to be evaluated. Perhaps there were other problems also that needed to be addressed in Granny’s case that could have made her better. And who knows, initially it may not have been dementia at all. I can’t be sure because I didn’t get all the parameters checked and I think I should have consulted someone else as well. But now, thinking back, we may have come to the definitive diagnosis too soon, too easily.

Dementia Care Notes: Often, people assume that if there is a doctor in the family, this doctor is responsible for, and will ensure that everything that is needed is done. As you are a doctor, did you experience this expectation?

Vidya: Well, my family did look towards me for suggesting the next, best step, but it was more of a responsibility that I felt on my own rather than it being implied or stated.

Dementia Care Notes: Did your professional background equip you sufficiently for what you needed to do? In what aspects of caregiving did it help? In what aspects was it of no particular advantage?

I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

Vidya: At that time, I thought that as I was a doctor, I had the advantage in caring for my grandmother. But now looking back, I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

Because of my being a doctor, I could get direct access to other doctors to discuss Granny’s condition. This was only of limited help as the city where we lived lacked facilities to provide actual care to older persons in her condition.

Dementia Care Notes: As a granddaughter, looking back to those days, can you share a couple of incidents that were frustrating or where you felt inadequate and helpless/ agitated?

Vidya: One such incident I would say was when Granny , not knowing what she was doing messed up the whole room with her poo and everyone was tired and frustrated with the cleaning and the awful smell. It was physically very demanding.

Dementia Care Notes: Can you share a couple of incidents when caregiving was fulfilling and heart-warming?

Vidya: On some occasions when Granny could recognise people around her I felt I could still feel her around with us, and it felt all worth while.

Dementia Care Notes: Your grandmother was finally transitioned to a long-term stay facility. Can you share with us the pros and cons that the family considered for the decision, and what the emotional impact of the decision was? What would you now advice people in a similar situation to think of?

Vidya: The decision to do so wasn’t easy because the whole idea was new to us – that of Granny being taken care of, away from us. It would mean seeing her less often and her being with people she didn’t know and who we hoped would be good to her.

But at the point of time, it had become physically impossible to take care of her in any of her daughters’ houses as they were old and had their own health problems. I lived in my father-in -law’s house so I couldn’t have Granny living with me. Besides, were we doing the best for her anyway? I don’t know. It was only gratifying to see that she was with family.

Each family has to make up their mind as to what and how much they can do and then take their own decision.

Dementia Care Notes: In your caregiving situation, your grandmother was looked after, turn by turn, by all her daughters. Do you have any tips on how sharing the care responsibility between diverse family members can be made smooth for both the patient and the relatives?

Vidya: I would say all three daughters shared in the responsibilities and tried to coordinate as much as possible, especially in the trying weeks when the caregiving nurse had completed her tenure and went back to bring a replacement.

Communication between the family members is the key to a smooth functioning of caregiving.

Dementia Care Notes: Is there anything else you wish to tell other caregivers?

Vidya: Looking back, I think that all of us in our family were not really prepared for the caregiving, though we did our very best. We didn’t know exactly what we were facing and what it could lead to. So we didn’t know what care was needed, and we didn’t plan for it. We fell in the turmoil of getting things done. For example, I didn’t sit back and think–What am I doing? Is this the right thing? Is there anything else? Maybe many other caregivers are in a similar position today, as we were then. Because sometimes when you are in the rut of things you can’t think….

I would advise caregivers to spend some time locating expert professional help to understand what sort of care will be required, and then to plan how they will give the required care.

Thank you for your time, Vidya.

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

Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience. Some names and details have been changed to protect the identity of the interviewee.

Dementia Care Notes