Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts

Hyderabad-based Ritika is a 48-year old solo caregiver for her 80-year old father, while her older brother, a prosperous businessman, lives in Jammu with his school-teacher wife. Ritika entered the solo caregiver situation without realizing it, in a series of steps involving her mother’s death, her father selling his Jammu house without anyone’s consent, and his insistence on buying a house in Hyderabad where Ritika’s husband (in the armed forces) was posted.

When Ritika’s husband was transferred out of Hyderabad, Ritika moved her father to Jammu so that he could be looked after by his son, but father could not handle the Jammu winter are returned to Hyderabad. Ritika moved in with him to support him through the winter months. “I knew he was ailing and felt duty-bound to look after him for the four-five winter months,” she says. However, her father did not go to Jammu to his son even after winter, Ritika could not join her husband on his posting, and it has now been three years and she is still in Hyderabad, caregiving for her father alone. Through these last three years, Ritika has faced extreme financial hardship and emotional setbacks.

In this interview Ritika shares the sequence of events, how every relationship has been tested in the last three high-stress years, how she copes, what she thinks of her future and how she manages to carry on in spite of such an extreme caregiving situation. [note]

Please give us an overview of your father’s state and the current care setting.

My eighty-year old father, once an alcoholic and chewing tobacco addict, is now suffering from hypertension, chronic kidney disease (CKD) and middle to advanced stage fronto-temporal vascular dementia. He can walk a little bit with the walker, but is wheelchaired for hospital visits and can only travel in an ambulance since he is unable to seat himself in a car without trained assistance. He also has a permanent suprapubic catheter [a catheter inserted into the bladder to drain urine directly into a bag]. He has no bowel and bladder control and has to wear diapers at night. He is incapable of changing his diapers and cleaning himself due to severe movement problems. I do all the caregiving and cleaning etc. I am not comfortable employing a day and night male attendant because my father and I live alone. He is heading for renal failure, and is very dependent.

You mentioned your father’s addictions and consequent health problems. This must have affected your childhood, too. Please elaborate on that aspect first.

My father had a very successful career, but at home he was just a source of tension to all of us. He would come home inebriated most evenings; every day, our tension would start around 6.30 – 7 p.m. Will he come home on time? In what condition will he come home? When will he come home – these were questions that would plague us every day. Some evenings he would remain at home but get drunk at home.

He never once lost his temper or raised his voice or hand; whether sober or drunk, he remained exceedingly courteous and polite. But I would say his drinking was violence in itself and cost me much of my childhood. My mother had been a very talented and creative person, and it hurt me to see her give up everything to try and give us a proper life, and also remain so stressed all the time because of him. I recall staying up on school nights till two and three in the morning, and I mostly underperformed in school.

All those years of tobacco and alcohol abuse resulted in various ailments. He got hypertension, suffered transient ischaemic attacks (TIAs) that are basically small strokes. His kidney started failing.

I think addictions are choices, and that my father chose to continue his habits. After his retirement, he stopped drinking (though he continued with his tobacco). All those years of tobacco and alcohol abuse resulted in various ailments. He got hypertension, suffered transient ischaemic attacks (TIAs) that are basically small strokes. His kidney started failing. All these were brought on by his choices.

Your older brother lives in Jammu and your father can still travel, so why are you still looking after your father alone and all the time?

I will share what I understand about the situation; it’s a bit complex. My brother and sister-in-law had been living with my parents, and running the house as my father got no pension. Then my mother got cancer. My brother and his wife did everything possible to treat her, and also keep her comfortable and happy but my mother’s state kept worsening.

His attitude and behavior changed after the TIAs but we failed to link the strokes with his changed behavior; we attributed it to ‘depression’ due to mom’s death.

My father had already been suffering from hypertension and kidney problems for some years by then, and shortly after my mother’s death, my father had a few TIAs, collapsing without warning. He would also often lose bowel control and soil his clothes and the area around him. His attitude and behavior changed after the TIAs but we failed to link the strokes with his changed behavior; we attributed it to ‘depression’ due to mom’s death. I feel the doctors should have really emphasized that he would act unreasonably, feel persecuted etc. due to the strokes.

Following mother’s death, my brother suggested that the old house be sold and all three of them (father, and brother and his wife) move into a house that my brother had recently purchased. My father agreed to the sale but insisted he would sell it because, according to him, my brother would sell it at a lower rate just to finish the job and then keep the money. This accusation was deeply hurtful to my brother who is large-hearted and sincere. The situation became very vitiated and I was called to make father see sense.

But my father was closed to reason and determined to sell the house himself. Brokers and buyers would drop in to see the house at all odd hours at very short notice, which was extremely intrusive for my brother and sister-in-law, but my father refused to listen to me or act more considerate. Unfortunately, as my brother and sister-in-law were at work during the day, and I was with my father, they started believing that I was manipulating my father to sell the house alone without including my brother.

What they did not realize was that my father refused to listen to me either. Daily my brother would come from work tired and try to talk to my father but father just refused to talk, which frustrated my brother, who would end up shouting. My father also indirectly accused my sister-in-law of having her eyes on my mother’s jewelry. One day, my father was really demeaning and insulting to my brother and it crossed a threshold; my brother and sister-in-law packed up and moved into one of the houses they had purchased.

In a day or two, my father found a buyer and sold the old house for a good amount. The full payment would take time to come through, and my father insisted that he would leave for Hyderabad immediately (where my husband was posted at the time), and told me to lock the house and take him to Hyderabad! Before leaving, he called my brother and just said, “I am flying to Hyderabad. I have sold the house the way I wanted. Bye.”

I was extremely angry at my father, but he could not be left alone, he refused to go to my brother, my brother refused to come back to the house to take him, and I could not leave him alone in the house.

I was extremely angry at my father, but he could not be left alone, he refused to go to my brother, my brother refused to come back to the house to take him, and I could not leave him alone in the house. After a day of some hasty packing I was forced to fly down with my father, who carried the first installment of the sale in cash, to Hyderabad.

How did this impact the marital front, given that you now had this unplanned additional responsibility of settling your father?

To take my father to live with me (even for a short while) was a tension-filled nightmare given spouse’s extremely moody nature, but I had no option. I must mention here that the situation on my marital front has been very difficult from day one.

Within the first month of marriage my husband showed his true colors by slapping me. Since he is in the armed forces I complained to his commanding officer and also left home. He promised good behavior and after months of cajoling I returned but he has remained a borderline case, displaying a lot of anger and criticism at home, unless he is in a good mood. However since he knew I would complain to the authorities he kept his violence in check.

Anyway, after bringing father to Hyderabad, I located an apartment for him to buy and we flew down to Jammu to collect the remaining payment of the house sale, pack my parents’ entire household and bring it to the new apartment that my father had purchased. My father still refused to move to my brother’s house, nor did my brother call or come to take him, probably not wanting to be hurt and insulted some more.

I would finish work at my husband’s home, send him off for work, then rush to my father’s apartment, work on arranging the furniture, clean and cook for him and then rush back in time to serve my husband his lunch.

With my father installed in his new apartment in Hyderabad, I had to juggle the running of two homes. I would finish work at my husband’s home, send him off for work, then rush to my father’s apartment, work on arranging the furniture, clean and cook for him and then rush back in time to serve my husband his lunch. I also had to juggle a lot of activities and functions which a serving officer’s wife is supposed to undertake. Within a month or two of juggling all this I was finally able to get a cook and maid hired for my father which provided me some respite.

What was the role played by your brother during all of this?

He was still shocked and upset and not really communicating much. Nor was my father apparently interested in discussing matters with his son, who had looked after him and the family so well all these years. The rift this incident caused was so deep, and the mistrust so high that my brother had at one point even contacted lawyers on how to proceed against father and me. In fact when my father wanted the new apartment bought in my name, I flatly refused, knowing that such an action would make my brother even surer that I had all along been after my father’s money.

All through this my father seemed unconcerned about everything. He made no attempt to patch up with my brother. It was only after many months, with the intervention of some close relatives, that my brother was willing to consider that maybe father acted on his own. Though we have apparently “reconciled”, my brother’s accusations have made me wary of him, and have affected how much I would be willing to depend on him in the future.

In hindsight, I believe my father’s behavior was a combination of his old uncommunicative nature and also the impact on his decision making caused by his TIAs (which he had when my mother was in her last stages of cancer, and perhaps later). My mother’s death also broke his tenuous, fragile link with the one person he did care for in his own way. But the reality is, my brother still has a lot of bitterness about the way father bought the Hyderabad apartment.

So in effect, you were managing the situation in Hyderabad on your own.

Yes and in the beginning it was not so bad, once I had organized the cook and the maid. In the four-month period that my father stayed with us (until the apartment was bought), my husband had organized a check-up for him with a very good kidney specialist who handed him a list of tests to do. My father got no tests done, but instead he would hire taxis and go about the city and come back for lunch or tea. At this time, I did not see my role as a decision maker for my father; my father was living his life and taking his decisions, and I was only helping. When my father ignored getting the tests done, I kept pestering him but did not forcibly drag him to get them done.

Even when he moved into his own new apartment he refused to get the tests done. After a year and a half of all this, my husband got posted out of Hyderabad and I needed to accompany him on his new, critical posting because he was due for promotion and required my presence and support. But on the other hand, it was clear that my father couldn’t be left alone in Hyderabad. My husband went off on his posting and I was left begging father and son (who were back on talking terms) to free me so that I could join my husband.

It took some time for my brother to arrange for my father to go to Jammu because of some other problems he was facing, but finally I was able to put father on the plane to Jammu. I flew out the very next day to join my husband.

But soon it was September and my father started complaining about the Jammu cold. He insisted on returning to Hyderabad. My husband was posted in the wintry north so I could not host my father. I told my husband that since dad could not live alone, and said I would be with him till end-March, when Jammu would be warm enough for him to return to my brother. But I have never gone back to my husband ever since.

Why didn’t your father return to your brother when Jammu became warmer?

When my father arrived in Hyderabad he did not seem very well. Within a month he began acting confused, dribbling urine, passing stools without warning etc. My father and I were now alone in that city, without back up.

Father’s condition rapidly worsened. He would start walking from one room to the other and five minutes later I would still find him standing half-way there, looking blank.

Father’s condition rapidly worsened. He would start walking from one room to the other and five minutes later I would still find him standing half-way there, looking blank. I would say something like ‘Dad!! Still here? Why have you stopped?’ and then he would look at me like he had just realized that he was not moving, but standing till even though he was only half way across the room. He had major problems in turning while walking etc. also.

It took two to three months of numerous tests, doctor visits, and finally a two-month hospitalization for his health problems to be tackled. All this happened in Hyderabad and my brother flew down to settle the hospital bills. He said he would make arrangements in Jammu and then take father with him. But this did not happen and I found myself unprepared financially through this entire situation.

Could you elaborate on the financial problem aspect please?

Yes, the financial problems were most unexpected. As I rushed through test after test I ran out of cash (my husband had never given me money, not even housekeeping money. If I gave him a grocery list he would make the purchases. I used to meet my personal expenses from online freelance work that I took up from time to time. So I did not have much by way of savings).

When my money ran out I went to father’s bank, only to realize that his bank accounts were practically empty. There should have been a very large amount left over from the Jammu house sale….

When my money ran out I went to father’s bank, only to realize that his bank accounts were practically empty. There should have been a very large amount left over from the Jammu house sale over and above what he had spent on the purchase of the apartment at Hyderabad, because I knew what both the figures were (the sale figure in Jammu and the Hyderabad purchase figure). But there was nothing. My father could not say what had happened to the money. We haven’t been able to trace that money till date.

In the months following his return from Jammu, father slipped from crisis to crisis, and my days were spent cleaning up after him, taking him back and forth for check-ups and investigations, doing all the housekeeping and cooking (I had dismissed the cook and maid) plus trying to work and meet deadlines to earn money to pay for it all. I tried to get a steady retainership where I could work from home and earn, but these things take time. Nothing had been finalized yet by the time my savings finished and I hit financial rock-bottom.

Matters were in such bad shape that I was looking at an electricity bill and trying to decide whether to pay it or buy groceries. Every meal time, I’d be tense on how I’d put food on the table. I went without meals so my father could eat. Plus there was the eternal fear of his condition worsening and my having to find the money for more tests. It was the sort of situation nothing in my life had prepared me for.

…driven to the wall, I began selling my personal silver and gold to get some money. I started with the silver.

I knew I could set up things if I got some lead time alone to build up a funds base; but such time was not forthcoming. So, driven to the wall, I began selling my personal silver and gold to get some money. I started with the silver. I would take a bag of my silver utensils, the puja thaali, things like that, to an area where there were silver and gold shops, and ask the shops how much they would pay for it. I would check in three or four shops and then sell where I was getting the best price.

The few thousands I would get would let me place food on the table for some more days, clear some more bills, buy the medicines. My father needed special food, and it was expensive to give him what his health required. Then I would be back again, selling more silver.

When the silver was over, I started selling the gold. I even sold a gold mangalsutra chain I had.

When the silver was over, I started selling the gold. I even sold a gold mangalsutra chain I had. As for my husband, he was already upset at my brother’s repeated broken promises and felt strongly that my brother was not doing what a son should do. He also said that I was not fulfilling my role as his wife; though he was right, he had already tormented me in myriad ways through every year of my marriage, and I did not see him as supportive and had no expectations from him.

I finally managed to get a job that pays Rs. 15,000 per month, enough to eat and pay for utilities and basic medicines, but have no buffer for emergencies, and little for an occasional treat. I am deeply grateful for this job, since I can only work from home.

My brother has now started paying for all my father’s medical expenses and hospitalization. I send him the bills and expense-sheet each month. I still manage the home expenses myself (though my brother says he wants to pay for those too, I am uncomfortable about what will happen after father’s death in case he demands a reckoning of all that he has spent).

My brother would have unquestionably bailed us out, but after all that he had accused me of I was not about to turn to him (this was my mental state at that time). My brother would drop in for an overnight trip when my father was admitted in the hospital for some problem or another, and he would clear the hospital bill, but his manner of talking was still brusque and whenever he disagreed with something he’d yell.

I definitely did not see him as someone I would approach for money for the endless doctor’s visits and costly tests that preceded every hospitalization.

All this time your husband was waiting for you to join him where he was posted?

Yes and every day or two he would call to get some idea of when I would be returning. I would call my brother who would assure me he would be there by the weekend to take father back. I would pack both our suitcases, but invariably on Friday or Saturday, I would get a call to say he could not come due to a crisis but would be there by next Wednesday. I would call up my husband, cancel my proposed return, and face my husband’s ire. Wednesday would come and go with a cent per cent promise of brother’s being there within another 10 days, which would inevitably be cancelled. It took me two months of this to learn to stop packing the suitcases each time.

This “coming on Sunday …. Sorry! now coming on Wednesday” nonsense continued till the month of May-June when I forever stopped asking my brother when he could come to take dad.

This “coming on Sunday …. Sorry! now coming on Wednesday” nonsense continued till the month of May-June when I forever stopped asking my brother when he could come to take dad. The impact of all this was depressing for dad and also very bad for my already tough marriage. Nevertheless, I told my husband I could not abandon my father in this condition and that I was not accountable for my brother’s actions, just as I was not accountable for my father’s or husband’s actions. He understood.

So you have not had any break in all these three years since that September when your father returned to Hyderabad?

I actually did manage a 10-day break. My husband had a conference to attend and my participation was very important simply because there were a lot of rumors circulating that we had separated. This could prove adverse from his career point of view.

My husband saw no reason why I couldn’t take a week off. Tired of my brother’s repeated last-minute cancellations and broken promises in the past, my husband sent me an air ticket (connecting) from Jammu till the conference venue-city. The tickets were in and would have cost my husband thousands had they been cancelled last minute.

My brother was unable to muster up any protest, and sent the tickets for me and dad to fly to Jammu and then I flew to join my husband at the conference venue. My husband wanted me to fly back with him, but I had some professional commitments to wrap up and would also need to shut the Hyderabad house down. I told him I would join him in a month.

Within ten days of my return to Hyderabad, I was back to looking after my father full time, with a suspicion that such a break would not be possible in future. I was right; that 10-day break was my first and last break.

However, in Jammu, at my brother’s end they were finding it difficult to cope with father; and my sister-in-law had complained to my father’s older brother’s that father was irrational and her maids could not handle it. Within ten days of my return to Hyderabad, I was back to looking after my father full time, with a suspicion that such a break would not be possible in future. I was right; that 10-day break was my first and last break.

What current role does your brother play, and how supportive is he?

The main way my brother has been supporting us is sending money for my father’s medical expenses, which is something he started doing only last year after the shape of my father’s illness and its financial impact became clear and after he realized I had been selling gold (something he has now forbidden me to do). I keep track of all the medical bills and send him a monthly round-up with the bills. This money is a big help.

My brother continues to live in Jammu, and drops in here maximum for an overnight visit if he is passing by, or if my father is in the hospital. Last year, he came for, I think around two nights across the entire year. Also, one complaint I still have is that my brother rarely calls (and my sister-in-law never calls) to ask about how I am faring, and so forth.

Sometime back I had a hairline fracture of the foot and was unable to rest it at all due to caregiving/housekeeping, but there was not one call from them asking if I was ok. My sister-in-law very rarely if at all picks up my calls. My brother also calls rarely (maybe twice a month) to talk to father or ask me for updates, and I am the one who calls up to tell him the status.

My brother has no idea (or chooses to have no idea) of what my life is like and sincerely provides solutions without asking what works for me:

My brother has no idea (or chooses to have no idea) of what my life is like and sincerely provides solutions without asking what works for me: for example, he insists I get a full time male attendant for my father, but cannot understand how I, as a female living alone with an elderly parent, do not want to do that.

My brother and I always had an affectionate trusting bond which was severely tested when he felt I had been instrumental in separating him from father and property etc. He felt it was my decision to take father and all the money from the house sale to Hyderabad. He did not realize for a long time that I had as little to do with the finances of that sale as he did. Our relationship has improved a lot as he is seeing that I actually ran away with nothing.

My effort has been to provide him regular info and updates on dad, and to build bridges and this has worked. He has personally seen all dad’s bank account printouts, which I could not get done since I could not move from the house. There is no money in any account.

I recently told my brother I would like a month’s respite from caregiving as I was feeling very tired and burnt out. He told me to sell the Hyderabad apartment, move with father and all the stuff to his other house in Jammu, and then take care of my father there. I ask you, where is the respite?

I don’t know if my brother really understands dementia, and how much it impacts life and care. His own caregiving for my mother (which he and sister-in-law did excellently and with tons of love) was for cancer, which is very, very different. My brother has not lived with my father in this state for long enough to understand how different and difficult this is.

Also, regardless of my admittedly tough marriage my brother seems to have understood my only role and responsibility as that of a daughter looking after her father and that if I want help, I and dad should relocate to Jammu. But even there looking after my father is supposed to be my job.

Also, regardless of my admittedly tough marriage my brother seems to have understood my only role and responsibility as that of a daughter looking after her father and that if I want help, I and dad should relocate to Jammu. But even there looking after my father is supposed to be my job. I had never thought that my marriage, my life, my priorities would be ignored, but the way it turned out, the situation has developed in a manner that neither husband nor brother came forward to help me.

Since I have taken over charge here, my brother has been able to take two vacations last year, one abroad and another to a family gathering. His vacations are the first he has taken after nearly 18 years of marriage, looking after mom, her cancer etc. The way I see it is that he should also come to visit his dad.

Overall, I don’t see how my husband and I can ever pick up as a couple from where we left off. Shouldn’t my brother have been concerned about his sister’s marriage? In any case it seems as of now at least that this solo caregiving will only end with my father’s passing away.

Do you have friends and neighbors who help or support?

By and large, neighbors are uncertain of what is going on, and they avoid me. As far as they are concerned, when I came here, I was a married woman, but now they rarely, if at all, see my husband. My brother does not come either. In the beginning, I would frequently tell the neighbors that my brother would be coming and I was going to my husband and then my brother’s trip would get cancelled, again and again. This looked so suspicious. My neighbors probably feel this is a funny family, so best keep away.

I have not had time or energy to make friends, but I do have a friend with whom I can spend about four hours a week, and also some childhood friends whom I call up to share things, to get or give updates, or just to rant. So yes, there are some people I can call up when I am really down.

Socially I am isolated, and I have to make very conscious efforts to remain connected.

Socially I am isolated, and I have to make very conscious efforts to remain connected. Because I am always short of time and energy, I am choosy about whom to talk to, but there are times I feel very lonely. In terms of friends who would actually drop in when there is a crisis, most of my friends are in other cities, and I don’t think I can feel secure about friends being available for such help, I’d rather be self-reliant.

How are you currently balancing your caregiving and work, and what is your current financial status?

I continue to live an on-the-edge situation financially. I am earning steadily now, but a monthly income of 15 K is small, and though I manage some extra assignments sometimes and make another five or ten thousand, such assignments also mean more work for which to squeeze out time. Balancing expenses remains tricky.

Our apartment is in an upper middle class locality, and neighbors expect me to pay my share in joint activities, like getting the apartment complex painted. The amounts are usually between 10-20,000 per apartment, and managing each such amount is a major struggle for me.

Every unexpected expense comes as a shock. ….every decision on what to get repaired (and what not) is a juggling trick.

Every unexpected expense comes as a shock. Some weeks ago, my computer’s Internet connection stopped working. The people I work for expect me to check my email and respond all day long. I dared not tell them about my Internet problem, because that would make me seem unprofessional and unreliable, so I had to keep rushing to the cyber café. I finally decided to use up some money I had just received for some work to set my Internet connection right, but every decision on what to get repaired (and what not) is a juggling trick.

People who have known me in the past know me as someone from a well-to-do family, and cannot grasp that I am now operating with zero savings and a very low income.

Today, into your third year of solo caregiving, what is life like? Have you been able to make any headway in meeting your wants and needs?

I have found a daily routine that allows me time to work and some time to move away from this atmosphere. Nevertheless my mind seems to have become very sluggish and I seem to be most productive in the very early morning hours when father is asleep.

I have also learnt to grab periods of free time to pack in activities that matter to me. This way I am much more fulfilled than I was when all this began. For instance many days I find myself up at 4.30 or 5.30 a.m. On such days I do a good amount of pending computer-related work before dad gets up. Then I clean him up (he is on diapers and catheter) before moving him to his TV room and giving him tea and breakfast. Every time I move my father from one place to another, it takes at least ten to twenty minutes, and needs much coaxing and helping, but it gives him some much needed change, so it is worthwhile.

I leave him with the TV and newspapers, do some home clean up, and then manage to put in another hour or so of professional work/phone call etc, before the maid comes to wash vessels and clean the house.

The switch to the dabba has made a major difference to my quality of life. It’s one area less to think and plan about.

I have, after much experimentation, stopped cooking and switched to a very hygienic home-delivery dabba instead, which saves me cooking time, grocery management time, and turns out cheaper with more variety in meals. The switch to the dabba has made a major difference to my quality of life. It’s one area less to think and plan about. Following lunch, dad is settled for a three-hour nap and I get a clear three hours off, which I use to finish off outside work. Then it’s time for dad’s physiotherapist who also these days gives me a half-hour session to help my frozen shoulder.

She leaves by around 6 p.m. and between that time and 7.15 or so I manage a walk or any other outside work. After dark if the electricity goes my father gets a bit disoriented and since he already hallucinates about my dead mom and grandmom speaking to him, I feel it is wiser to stay home after dark.

One TV serial and the net is currently my major source of entertainment. I slump in front of the TV every evening, and I keep the reruns going in the morning for some chatter in the background while housekeeping.

Just staying home all day with no one to talk to gets on my nerves sometimes.

Just staying home all day with no one to talk to gets on my nerves sometimes. Sometimes I call up friends just to hear another voice, or to hear myself speak. Once in a while, when I am really feeling closed in, I try to take an outing to a mall or visit a beauty parlour or do something that will make me feel more “normal.” My daily routine is more complex on the days when my father needs some medical checkup, or has any emergency.

Personality-wise, I have changed over these years. In many ways I am more patient, but more impatient in others. For example, I can longer tolerate inane/ idle/ pointless chatter. Nor do I like people who whine and complain about small things. Being cooped up with an 80+ uncommunicative man as a companion with no end in sight sometimes makes my resentment surge, but on most days I try to see the plus points and go with those.

These are [i] I am getting a chance to restart my career and build savings, [ii] I am tested daily about how I handle tasks, and am becoming a better time manager, [iii] I am developing a self-motivated approach to happiness which will sustain me after my father dies.

What is your feeling towards your father? How does the past affect your function as a caregiver?

Despite all that I do for him I do carry a lot of anger and resentment against my father. My father was, as I have said, a tobacco addict, and also an alcoholic for years. His medical problems today are a direct result of his addictions.

He indulged himself when he was younger and the result of that has destroyed whatever I had built up on the personal and social front over the years. He spent his life without planning. He did not even bother, for years, to build good communication with his children. His problems with my brother over the house sale were partly because they did not have enough communication even before the TIA strokes impaired my father’s behavior and problem-solving abilities.

I deeply resent the addictions of my father that have left him fully dependent on me. My resentment really peaks up when I am exhausted, bored, and lonely,..

I deeply resent the addictions of my father that have left him fully dependent on me. My resentment really peaks up when I am exhausted, bored, and lonely, and on such days, I yell at him, pointing out how I am paying the price for his mistakes. At times like this, I feel that, given that I am doing all the work all alone and that this state of his was because of his mistakes, he has earned a periodic shout.

I have no regrets about that yelling because I know I will go crazy if I don’t let go even occasionally. At least I am making sure of his well-being in spite of all my fatigue and everything else. It would be inhuman to expect that I don’t have any anger about the situation. One has to live this life to know what it is like.

I am almost 50. I so badly need a day when I can wake up when I want. I need a day when I don’t have to think about my father all the time and can just think of myself.

How can I explain it? I am almost 50. I so badly need a day when I can wake up when I want. I need a day when I don’t have to think about my father all the time and can just think of myself. I need a day to pamper myself, maybe just go window shopping and out to lunch without a thought. I don’t know for how many more years my life will continue to be like this, so I have started to accept all the limitations and maximize all that I can do.

This period has made me realize that life is about accepting reality and finding solutions without being too adversely affected by the limitations. Nevertheless, there are still days when I would rather wake up and see my husband’s face instead of my father’s bottom full of potty!

Looking back, what can you say about the overall caregiving experience and about where you are?

Let me say it: It need not have been like this.

If there are elders in a family, the chances are that such situations will occur. Families can be ready for them. They can plan for them. When situations occur, solutions don’t automatically evolve out of sheer love and affection for each other. Solutions evolve out of trust and sitting together and planning for all eventualities. All ties get tested at times like this if there is no plan.

I think it is totally criminal for a family to put the entire burden on one family member so that it takes a toll on all aspects of that person’s life. I think it is criminal to expect one person to cope with all the work, all alone, all the time and not do anything to give the person any break at all.

Sending money is simply not good enough.

I should not be made to feel guilty to ask for a month off. I find it is useless and futile to ask anyone to bail me out, and I repeat: it need not have been like this.

Caregivers should get that occasional bail-out, some breaks.

What keeps you going, and what are your thoughts about your future?

I do what I have to do. The times are fewer and fewer that I feel deep resentment and anger, I also know that at the end of the day, I have to keep up my morale. The last two years were horrible because I did not know what I was getting into, and the financial hardships, the isolation and the sheer amount of work and everything else all got very overwhelming. But I think I have crossed the bridge now and I will survive this.

I handle my daily routine mechanically and try to detach myself while I also try to develop skills which I can use later. My target is to become more efficient and effective on all fronts and keep finding solutions instead of feeling helpless, angry, and resentful.

About my future, I don’t know how long I will be looking after my father. After he passes away, I don’t know whether I would like to stay with my husband full time again. My husband with his tendency to violence, his put downs, disapproval and disparaging nature can be very stressful to handle too. Also suppose I stay on here with father for another five to seven or even ten years (if he lives till 90) – then will I have a marriage left at all? Who knows what the future will bring.

I am focusing on my earnings now and on moving along practically and cheerfully. I have to act wisely now if I want a secure and stable future.

Thanks for this eye-opening interview, Ritika. Let’s hope all works out well for you!

[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.

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

Neena (name changed) is a Gurgaon-based chartered accountant with 22 years experience. She has now quit work to manage care for her mother-in-law, who is now dependent for all activities. In the interview below, Neena describes the caregiving situation and its challenges, and how she handles it. [note]

Please give us some background information about the patient.

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

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

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

What is your role in the patient’s care?

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

What are the current symptoms?

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

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

Please describe the current care arrangement for the patient.

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

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

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

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

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

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

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

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

For which activities is the patient currently dependent?

She is dependent for every activity.

Please share some caregiving incidents that you found fulfilling/ heart-warming.

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

How supportive have relatives and friends been? How do they help you?

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

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

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

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

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

Do people around you understand dementia? Are they able to interact with the patient?

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

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

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

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

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

What sort of additional resources/ facilities/ services would help you in better caregiving?

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

Any other comments?

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

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

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

Thank you so much for sharing this, Neena.

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

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

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

Rukmini (name changed) is the granddaughter of a dementia patient who passed away in an old-age home a few years ago. Rukmini’s mother and aunt, caregivers of the patient, never acknowledged the diagnosis of dementia, and did not take it into account while caregiving. Even now, years after the patient’s death, Rukmini’s mother does not understand that the patient’s strange behavior was caused by confusion and frustration; she is convinced that the patient was being uncooperative and inconsiderate. [note]

Over to Rukmini:

I have read “Caregiver Voices” on this website and also seen stories on other websites. Many stories describe how family members changed their lifestyle, left jobs, and moved from one city to another to look after a loved one. Their main concern seemed to be caring for the patient and they tried their best to make the patient’s life comfortable while also balancing their own lives. My own story is very different, because my mother and aunt are in denial about dementia and related caregiving even years after my grandmother’s death.

Background:

Mom and Auntie (Mom’s sister) live in a small town and Nanima (Mom’s mother) used to alternate between Mom and Auntie. When Nanima was in her seventies, she suffered a series of strokes, and began behaving in a very odd way after that. The doctor told Mom and Auntie that Nanima had developed dementia and would get worse over the years.

Mom did not share the diagnosis with my sister or with me.

Mom felt Nanima’s behavior was hurtful and embarrassing. To add to the problems, Auntie claimed that Mom was not giving proper care to Nanima.

Nanima was living with Mom at the time of the strokes, and, according to Mom, she was acting “stubborn” very often. Mom felt Nanima’s behavior was hurtful and embarrassing. To add to the problems, Auntie claimed that Mom was not giving proper care to Nanima. All this stressed Mom a lot, and every time my sister or I talked to her, she complained about Nanima and Auntie.

I lived in a city which was a day’s journey away from Mom, with my in-laws in a joint family system. My father-in-law had cancer, and my mother-in-law was arthritic and a diabetic and hypertension patient, almost bed-ridden because of her problems. I had left my job to take care of my in-laws and to handle the work of our joint family. Already overwhelmed with various illnesses and responsibilities, my only way of supporting Mom was listening to her and consoling her over phone every week.

My sister lives in the USA; she is unmarried and has a comfortable job. When she realised how stressed Mom was, she invited Mom for a holiday. To Mom, it sounded an attractive way out of her current stressful life, so Mom told Auntie, “Okay, you always keep telling me how I should take care of her, why don’t you handle her for a few months, I am off to the USA to visit my younger daughter.”

Auntie promptly agreed, saying, “Yes, I’ll look after her, and you’ll see, I will take better care than you did, and she will improve”. Nanima and her full-time attendant were moved to Auntie’s home.

For the first few weeks, Auntie was very enthusiastic about the “progress” Nanima was making and kept telling Mom how happy Nanima was. But then, Auntie’s enthusiasm of looking after her mother vanished. Soon afterwards started the complaints, such as “”she is so difficult”, “the nurse has to be fed”, “she is so heavy, one person cannot lift her”, etc. Once, when very upset, she even said, “Why can’t she just die?”

Around that time, Auntie’s daughter (also in the USA) became pregnant and she asked Auntie to come over to help her through the pregnancy and the subsequent babycare.

Without consulting with Mom, or asking her to return to India, Auntie fixed up an old age home for Nanima. She then called Mom and told her. Mom didn’t offer to rush back, and Auntie placed Nanima in the home and went off to her daughter in the USA. Some distant relatives who stayed in their city agreed to check up on Nanima at the old age home every month to send the “she is okay” updates to Mom and Auntie.

Nanima died a year later in that old age home.

The word ‘dementia’ was never mentioned by either Mom or Auntie. Based on what I’ve heard, I conclude that the Mom and Auntie did not connect Nanima’s dementia problem with her odd behavior.

I was not present during the caregiving, but I was in touch with Mom over phone very frequently. I would call home every week.

Mom would tell me and my sister that Nanima was being troublesome and stubborn. Auntie would visit Mom every week, and each such visit was ending in some sort of unpleasantness, because Nanima complained to Auntie about Mom; Mom termed this as “playing politics” to cause a rift between Mom and Auntie. Often, these complaints were about food, such as not being given her meals on time, or getting stale food or the amount of food not being enough. Auntie would question Mom about these and Mom would either flare up or start crying; the whole thing sounded like a family drama of a soap-opera style.

Neither my sister nor I suspected that Nanima has been diagnosed with a medical condition that explained her behavior.

It always sounded like Nanima was perfectly fine physically but deliberately acting in inconsiderate ways.

Mom would also say Nanima was getting lazy and not taking her bath properly. She would say Nanima was inconsiderate and would go off for her walk without telling anyone. It always sounded like Nanima was perfectly fine physically but deliberately acting in inconsiderate ways. Auntie, on the other hand, believed every “complaint” of Nanima and constantly blamed Mom for not caring “properly.”

When I think back of those days, I feel quite sure that neither Mom nor Auntie tried to understand what “dementia” was and how it impacted Nanima, let alone try to see how to help Nanima.

My own exposure to Nanima was very short, and I did not guess anything either.

I would visit Mom once a year in a really packed-tight three-day trip, which was all I could manage. To host me and my husband and kids, Mom would move Nanima off to Auntie’s place for those three days, and the time I spent there would vanish in a whirlwind of visits to all relatives and friends. I would visit Auntie, too, and would find Nanima sleeping in front of the TV or in her room. I barely got to exchange a couple of sentences once in a while, and she seemed disoriented. Friends and family talked of her as a troublesome old woman.

I learned of the diagnosis a few years after Nanima’s death.

After my in-laws passed away, I was able to meet my cousins and attend family functions. Nanima had died a few years ago. On one family function, Auntie’s eldest son mentioned then that his father-in-law had dementia, and added, “like Nanima.” That was the first time I heard of the diagnosis.

Nanima had slowly gone blind because of her cataracts, but being a dementia patient, she probably did not realise what was happening

Another very shocking thing I learnt then was that Nanima had been blind. Apparently, Nanima had slowly gone blind because of her cataracts, but being a dementia patient, she probably did not realise what was happening and did not know how to tell anyone about it.

Nanima’s blindness was discovered after her dementia had advanced and she was in the old age home. Mom and Auntie were both away in the USA. Nanima’s behavior made it obvious that it would be very tricky getting her operated and making sure she followed the post-operative precautions and care. No friend or relative was willing to even consider whether Nanima could be operated and given back her vision.

The denial about dementia continues even now.

Even years after Nanima’s death, Mom doesn’t accept that she was a dementia patient. When Mom talks of those caregiving years, she only keeps narrating the difficulties she faced looking after Nanima; there is never a sentence to say that Nanima also suffered.

Auntie, too, is still overwhelmed by her own experience and has not thought that Nanima faced difficulties. Once I told Auntie that it must have been horrible for Nanima to spend the last year of her life blind and in an old age home surrounded by strangers. Auntie only shrugged and resumed describing how difficult it was for her to handle Nanima.

It is obvious that, in spite of the doctor having diagnosed dementia, my mother and aunt did not relate Nanima’s behavior to her dementia diagnosis right till the end. Given that they did not think Nanima was facing genuine problems, their way of caring was obviously full of resentment and anger, and must only have confused and upset Nanima more. It seems such a tragic waste.

In a candid moment once Auntie said, “I never expected her to live so long. I thought she was unwell, so she would die soon. I thought, her ticket had been bought, only the reservation needs to be made.” Meaning, Nanima’s death was imminent, only the actual date was not yet known.

After I heard about the diagnosis and read up on it, I asked Mom whether Nanima had been forgetful. I was told, “Your Nanima was only pretending to forget things. She could remember so many things of her childhood, how could she claim to forget what happened just a few days ago?”

From what I’d read, I had learnt that forgetting in dementia often followed this type of pattern. I told Mom this and showed her an article but Mom refused to believe me and would not read the article.

Mom and Auntie seem to have forgotten the disagreements and upmanship they had over caregiving

I remember one specific issue that had been a cause of conflict between Mom and Auntie. Mom used to give Nanima toast and butter for breakfast, because that was “normal” at home. Auntie had always been critical of this “laziness” because, to her, breakfast should have been stuffed paranthas. On a few occasions, Nanima apparently said she had not been given any breakfast, and Auntie believed it. When Auntie took over Nanima’s care, for the first few days, Nanima seemed to enjoy the change and Auntie was quick to point out this to Mom (in what Mom called a “gloating” way). But a week later, Nanima was refusing paranthas and had to be switched back to toast.

Within a few weeks of Auntie’s takeover, Auntie began complaining about Nanima, and the complaints were similar to what Mom’s complaints had been.

It is as if they have united because of their common guilt, and they are both busy convincing themselves and others that they had no option but to move Nanima to an old age home

Strangely, Mom and Auntie no longer have any differences about the quality of care they gave. It is as if they have united because of their common guilt, and they are both busy convincing themselves and others that they had no option but to move Nanima to an old age home.

Nanima’s behavior gets worse with every retelling.

The stories about Nanima’s “bad” behavior grow bigger every time they are told, as if Mom and Auntie are trying to convince everyone that it was really unbearable. Perhaps this denial is their way of coping with guilt.

Part of the problem is because our family has always claimed to have solid “values”; everyone is highly educated, in good positions in their jobs, well-respected in their social circles, and many elders are known for their spiritual and philanthropic works. In a family of this profile, one expects that everyone will rally together to do what is right. Mom and Auntie have both taught in colleges, and were known for their strictness. I have often heard them lecture others on how elders must be respected and how the new generation did not take good care of their parents and in-laws. I guess it is embarrassing for them that they placed their mother in an old age home. Perhaps their emphasis on how difficult Nanima was, is their defense against unsaid accusations.

But what I do not understand even now is why Mom and Auntie ignored the medical diagnosis and even hid it from us. They did not try to understand the reality and adjust their care to it.

Nanima was a remarkable woman, and her final years seem so tragic.

Nanima was a truly remarkable woman. Widowed when very young, she single-handedly brought up Mom and Auntie, provided them with a good education. She had to sell off her property and jewellery to do so. Both Mom and Auntie completed their post-graduation and joined jobs as college lecturers. When Namima was around 65 years old, she distributed all remaining wealth to her daughters, saying she did not need any money because her daughters would look after her. Nanima’s life continued to centre on her daughters; she shuttled between them depending on their needs (childbirth, young grand children to look after, etc.)

I feel very bad that Nanima spent her last years in an environment where her confusion and frustration was mistaken for stubbornness, and where her daughters, whom she loved dearly, were unable to give her the tender care she needed because they could not (or would not) understand her problems.

Their lack of understanding made life more difficult for them, too. Even now, they are not at peace about this part of their lives.

Mom’s denial about dementia extends even today, to people around her.

One would think that, having seen the problems Nanima faced, and with all the media coverage of dementia nowadays, an educated and intelligent person like Mom would accept that dementia is a genuine problem.

But those years of suffering that Nanima went through, and that Mom struggled through, have taught her nothing. Mom still does not understand that a person with dementia needs to be treated differently, and that caregivers can help the patient and themselves if they understand that the patient lives in a different reality and adjust their interactions for that.

I strongly feel that even if Mom was ignorant about dementia back then, she can at least be more sensitive with patients now. But Mom’s denial about Nanima extends into denying that anyone could have dementia. She doesn’t state it that way, but she behaves as if no one could have dementia.

<p”>Recently, Mom and I visited an elderly family friend whose wife has been diagnosed with dementia. The lady’s daughter informed us of the diagnosis before taking us to meet the lady, and explained that the lady gets very upset if asked questions.

As soon as we met the lady, Mom loudly asked her whether she recognized us. The lady looked puzzled and then said, “Of course,” but it was obvious that she did not. Mom asked her, “So what is my name?” At that point, I quickly introduced ourselves, while glaring at Mom, indicating to her to stop.

Mom did not stop. Over the half-hour we were there, Mom scolded this lady for being dependent on her daughter and for having stopped cooking. She told the dementia patient that she should have more “will power”. Mom even boasted that she would never become dependent on anyone like this lady had become. I tried to shoo Mom to keep quiet, and changed the topic a few times, but Mom only flared up more, claiming that it is daughters like me and this lady’s daughter who are the real problem because we unnecessarily stop elders from doing things and are “controlling.”

At one point, Mom asked the lady, “So, which book are you reading now?” The lady said she was no longer able to read much, and Mom began scolding her for not trying hard enough.

On our way back, I told Mom that her behavior was very inconsiderate to both the lady and the family, especially since we had been clearly told about the lady’s medical problem. To that, Mom said that there was no problem that willpower could not solve, and that the lady was just being lazy, and this so-called dementia was just an excuse. “I will never become like her,” she declared.

We argued for a while, but how does one make a person understand if the person is determined not to? If a person of Mom’s profile can’t understand that dementia is caused by a problem in the brain, how can we ever spread awareness?

Mom is now in her seventies. Surely, she should accept that dementia could happen to her, too, and if so, she would want people to be compassionate while caring for her! But perhaps she is in denial because she is scared she will be like her mother and that we will treat her the way she treated her mother. Maybe it is easier for her to think she can use willpower to prevent such a problem. That is denial at its peak, but I cannot think of a way to make her understand.

Thank you for sharing this, Rukmini

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

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

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

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.

Could you give us some background information first?

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.

You mentioned earlier episodes of strange behavior, prior to the diagnosis. Could you describe them?

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.

What made you consult a psychiatrist?

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.

How did getting a diagnosis change things?

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.

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?

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.

Can you describe the incident where your father thought you were trying to get him murdered?

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.

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 gone back and left him here, living with you?

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.

Did your aunts know of the diagnosis?

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.

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

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.

Has he often shown fear of attack and murder?

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.

Are there other strange behavior patterns you’d like to share?

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.

Can you share any incident which was heart-warming for you?

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.

What is your father’s current state?

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 bathing 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.

How do you and your mother cope with the stress of caregiving?

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.

You mentioned that you are more peaceful about caregiving now. Can you share what has helped you do what you must do?

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.

What are your plans for the future, with respect to caregiving?

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.

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

Rajesh is a management consultant living in Bangalore. His wife’s mother started showing dementia symptoms around 13 years ago and was diagnosed 10 years ago. Rajesh’s wife, the primary caregiver, got increasingly pulled into the care work. In this candid write-up, Rajesh shares how he failed to support his wife in the beginning. Based on his experience, he shares tips on how close family members can support primary caregivers. [note]

Rajesh writes:

This note is intended for family members close to the main caregiver, such as the caregiver’s spouse, siblings, and children.

My mother-in-law suffers from dementia, and my wife is the primary caregiver. Nowadays, I introduce myself as a secondary caregiver, but I did not always see myself in this role. After my mother-in-law was diagnosed, and my wife took over the role of the primary caregiver, I failed to support her for many years because of ignorance and some incorrect attitudes.

Briefly,

  • I did not try to learn about dementia or its caregiving after the diagnosis. I had no idea of what to expect. I think I expected no impact.
  • I underestimated the amount of work my wife was doing. I did not appreciate that she was getting physically and emotionally overwhelmed. I thought she was “negative” when she looked worried. I also thought she was overreacting when she asked me to reduce travel overseas because she would not be able to handle emergencies.
  • Most people in India treat dementia patients like they would treat any other elder. Close relatives would tell my mother-in-law to show more “willpower.” They criticized and mocked her for her “dependence” on my wife. They blamed my wife of negligence and ill-treatment based on her mother’s confused statements and their ignorance about dementia. I knew this was unfair. But I told my wife and mother-in-law to “adjust” or “ignore” critical comments. I did not try to explain dementia facts to relatives. My wife was completely isolated by my relatives.

I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.

  • As caregiving took up more and more of my wife’s time and energy she had to give up the professional work she loved. She also had to give up her social life, her friends, and her hobbies. It was a loss of identity for her. I did not realize that she needed emotional and functional support, and that she needed breaks from caregiving.
  • I viewed caregiving as just doing a set of home-based tasks, and easier than “professional work”. I did not consciously look at my assumption. This unexamined assumption affected my attitude and decisions for many years.

My way of looking at things changed once I increased my participation in the care. I found that some situations around care were more stressful than what I faced in my professional life with all its deadlines and deliverables. It was unrealistic to expect the primary caregiver to handle this work alone without family support.

Below are some of my specific experiences and suggestions for people close to the patient and primary caregiver:

Learn about dementia and caregiving

After my mother-in-law was diagnosed, my wife read up on dementia and caregiving. She pointed me to references. But in my view the doctor had talked of memory loss and I did not need to read more about it. My ignorance affected many of my actions and decisions.

It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.

  • When my mother-in-law’s behavior became stranger and embarrassing, I thought of her as “a difficult person to live with”. It was only after my mother-in-law started confusing morning and evening and could no longer read the time on a clock that I acknowledged her medical condition. But even then, I did not think her agitation, frustration and “lies” were actually the impact of dementia.
  • I did not realize that dementia gets worse with time. So I did not plan for the fact that her care would also keep increasing.
  • My ignorance also meant that I could no longer talk with my mother-in-law. I began avoiding her because of her “unreasonable” behavior. It was many years before I figured out how to communicate with her.

My suggestion to anyone close to a dementia patient or the primary caregiver is to understand dementia better. Learn how it may be affecting the patient’s behavior. Understand how the problems grow with time, and how the type of care will have to be changed because of this. In the early stages, the patients are physically strong. They are leading active lives and trying to cope with the confusion and other problems but they may hide their problems and resist help. Some may be stubborn or even abusive. Things change a lot with time. Towards the later part, they are usually bedridden and cannot do even the basic tasks for themselves, when they cannot speak, and are sleeping sleeping most of the time. There are many books, websites, videos, and other resources for understanding dementia.

You must also learn what caregiving involves. This includes effective ways to communicate, helping with activities, handling odd behavior. You need to understand these to continue to interact with the patient, and to help the primary caregiver.

Tell people around you about dementia and the caregiver’s role

My experience with my relatives showed that people do not believe the caregiver’s explanations about dementia. This is especially true if they think of the caregiver as an “outsider,” like a daughter-in-law from a different community and caste. Because they do not understand the patient’s problems they do not understand that caring for such a person could be different from living with a normal elder.

One example: My mother-in-law was very uncomfortable going out, so my wife reduced her outings to what was really needed so as to reduce stress. My relatives called my wife cruel and said they would not want to be treated like this when they are old. They did not understand that a dementia patient gets stressed if the routine is changed or when there are too many new people and places. They ignored my wife when she tried explain. They assumed she was hiding her neglect and laziness and cruelty.

I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong. I thought we would not need support from others. This cutting off only made things more difficult for my wife.

I want to emphasize that we should not underestimate the need to explain to others. I assumed that others do not matter. I was wrong.

When my mother-in-law was distressed because of what my relatives said to her, I told her to “adjust” and to “ignore” them. Looking back, that was very odd of me. I expected her to be more understanding and adaptable than my relatives who were in good health and fully alert mentally.

We must ensure that persons interacting with patients do not agitate or upset them. Also, make sure that they do not judge and criticize the caregiver because they don’t know enough about the patient’s needs. Visitors should understand that the patient’s complaints may be a result of confusion and delusions.

  • Explanations are believed more if given by someone other than the caregivers. When caregivers explain, people think they are making excuses to justify neglect or cruelty.
  • Explaining the situation is not easy. You may have to do it differently for each relative or neighbour. Some persons may be willing to read a pamphlet, others may not. Some may be ready to watch a video. Some may respond better to explanations and examples of other patients. Examples could be listing other family members who had behaved strangely and may have had dementia. Or famous persons with dementia.
  • You may need to request someone neutral, like a social worker or a specialist, to explain
  • Explanations usually have to be repeated many times before people really understand the situation.

Try to reduce caregiver isolation

Many of us think that when caregivers seem down they are being negative and defeatist and not “pulling themselves together.”

When my wife seemed quiet or looked unhappy, I assumed she was being too emotional. I thought she worried too much and that she was not able to keep things aside and enjoy life. If she tried discussing possible emergencies or problems she faced with the attendant, I dismissed these as minor problems and told her she was being negative. This hurt her deeply because she expected me to understand. As she once said, “If even you do not understand, why would anyone else?”

Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.

Many factors contribute to caregiver isolation. As the patients start needing closer attention, caregivers are more confined to home and also isolated from others. They often have to give up any work or hobbies that require going out of the house or meeting people. They cancel social outings because of last-minute care problems and so people stop inviting them. Criticism, like what my wife faced, makes them withdraw further. Odd behavior by the patient means people reduce visits to meet the patient and family. Or the family may stop inviting people home because the patient gets agitated or insults visitors, and visitors may get offended.

Family and friends close to the caregivers can help reduce this isolation. If they understand how emotionally stressful care is, they can find ways to support the caregivers and reduce stress.

My advice to people is:

  • Try to understand how isolated the primary caregiver may be feeling.
  • Think of the emotional difficulty of caring for someone who is mentally deteriorating and knowing there is no hope of improvement. Also, there is no way to know how long this care will go on.
  • Think of how conflicting it may be for a caregiver to imagine getting “free” of the caregiving role.Sometimes, frustrated because we could not go together for vacations, I would fantasize about the fun my wife and I would have later. I was surprised when my wife didn’t respond with enthusiasm. Later I realized that I was, in effect, asking her to look forward to a time after her mother’s death; thinking like this would make her feel guilty. She would also find it tough to go back and provide compassionate care for her mother without any sense of guilt or resentment.
  • When providing support to the caregiver, provide it in a way that suits the caregiver’s personality. Some caregivers like distractions and comic movies, others want appreciation of their work. Many want to be heard when they talk of their problems. They like sincere reassuring statements like “I am here to help in whatever way required”.
  • Don’t act preachy lecture or provide empty suggestions like “try to lighten up” or “take care of yourself” or “take a break”—-they sound insensitive if they are not practical.
  • See how you can to give the caregiver time off breaks where the caregiver can meet people and do enjoyable activities. Most caregivers do not ask for help because they don’t want to be preached to. As someone close to the caregiver, you can notice the stress and offer help.

Consider the primary caregiver’s increasing workload while making choices that affect your availability to support the person

After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.

My professional work had peaked around at a time my mother-in-law began showing even higher degree of agitation and self-harm. My wife was busy with caregiving work. Because I was over-busy, she also had to manage various home administration tasks. These included bank work, handling my accounts, and even correspondence with tax authorities. I was travelling almost all the time. My wife was left alone to handle situations when my mother-in-law fell ill or when the attendant vanished without notice.

After I realized how much work caregiving required, I started thinking how I could take on part of the work and support my wife. It took me several months to finish existing commitments and reduce my overall professional work and travel to do this.

Dementia goes on for many years. The care needed also keeps increasing. Except in the beginning, it is almost full time work. The primary caregiver cannot do this alone, and others have to get more involved in the care. We also have to arrange for the money needed.

In long-term care facilities attendants work in shifts. There are also support staff and counsellors. The employees get weekly holidays. When the patient is cared for at home, we cannot expect one primary caregiver to do all the work alone, all day and night long, and without any break!

My suggestion is that family members should understand the real care load and plan for changes to their work commitments. This could involve:

  • The type of outside work being done, in terms of the time and stress involved. A very stressful job will leave you no time or energy to help the primary caregiver.
  • City you are working in, and travel requirements of the job. Your cannot give much physical or emotional support if you keep going to other cities for work. If you travel to other countries, it is even lower.
  • Flexibility to handle emergencies. Your job may not be flexible enough for you to be available for emergencies. For example, if you need to be present in another city on a particular date, or if you have many difficult deadlines, you cannot help even in emergencies, when your help is critical.

You may have to look at your lifestyle choices also, such as:

  • Location of where you stay, the kind of house, privacy, etc. For example, you, the caregiver and the patient may have to move in together or stay close to each other. Any change of residence can severely affect the patient, so you may be the one who moves, not the patient.
  • The house may need changes for the safety of the patient and for making care easier. Furniture may need replacement. Rearrangement may be needed so that visitors coming to meet you don’t disturb the patient. You may need to entertain your guests somewhere else if entertaining them at home is inconvenient for the patient. If you use paid help, then you need to consider privacy and how to ensure safety of valuables.

Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls.

  • Not all leisure activities will be possible. Even short vacations with the primary caregiver may not be possible, or may require careful planning. You may have to switch to other types of entertainment and relaxation activities, such as watch home video movies instead of going to multiplexes in malls. You may have to depend on reading books and and taking walks in neighbourhood parks or going for short scenic drives, instead of taking weekend breaks outside the city. Visits to relatives in other cities and countries may be utterly unfeasible.

Functional support

Even if you are not good at emotional support, you can help in many functional areas. Caregiving for a dementia patient is sometimes called a 36-hour job (I think it is more than that), so every bit helps.

Here are some examples of functional support to consider:

  • Investigate and evaluate professional caregivers, respite homes, home nursing, as the primary caregiver may not have the time and energy to do this research.
  • Set up the home for handling emergencies.
  • Arrange doctor visits, lab tests, and getting medical supplies.
  • Ensure that the caregiver and the patient have nutritious food.
  • Arrange (appropriate) entertainment for the caregiver and patient, to give them a change and a suitable break. Make sure that the break does not create more issues later. For example, the patient may enjoy a visit by relatives, or a visit to the market, but display disturbed behavior after such a visit.
  • Provide respite to the caregiver by taking over the patient’s care for some time. To do this you will have to learn caregiving skills, develop rapport with the patient, and earn the caregiver’s confidence that you can do this task.
  • Jointly with the caregiver, e-arrange the house. This may require some bigger changes like putting grab rails, replacing furniture, and getting , equipment like hospital bed, blood pressure equipment, wheelchair, etc.
  • Take over some of the activities from the primary caregiver. For example, grocery and vegetable shopping, utility payments, house repair, tax returns, investments, bank work, vehicle repair, paperwork like passports, identity papers, driving licenses, etc.

In conclusion:

The primary caregiver invests a large chunk of life to care for the dementia patient. This includes giving up on professional life, leisure, and social life. Savings may get wiped out. While we cannot give them back their life, we can take out the time and energy to help them. Helping them is a meaningful way of using our own time and energy and can also be very fulfilling for us.

Thank you for sharing your experience and listing these useful tips, Rajesh.

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

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

Conflicts in the family over dementia care

Sarla (name changed) lives in the USA with her husband. Her mother-in-law, who lived in India, passed away after suffering from Alzheimer’s for some years. In the detailed account below, Sarla describes the progression of the disease and the care, and how the family’s lack of communication, resentments, and conflicts came to play in the situation. We see the whole gamut of the experience–the initial denial, the spouse hiding the loved one’s problems because he wanted to remain independent and not bother his children, the problems of caring from overseas, the lack of coordination and trust, the clashes and criticisms because of differing perspectives over what care constituted, and what the end-of-life decisions should be. [note]

Sarla gives her conclusions at the end. We, as readers, may draw our own lessons on what we can do in similar setup to avoid the problems faced by Sarla’s family while caring for the ailing mother-in-law.

Coping with Alzheimer’s from 10000 miles away

By Sarla (name changed)

You want to get on a plane and be there but also know it is not feasible every time. You live here and they live there and that is the reality today.

What is it like to monitor a serious sickness of a loved one from 10000 miles away?  You get a call early morning telling you of a problem. You stay awake all night (being 12.5 hrs behind) waiting for updates. You try to hide the panic you feel (everything seems so much more scary because you are not physically there) and stay calm for the parent who is handling the crisis.  You want to get on a plane and be there but also know it is not feasible every time.  You live here and they live there and that is the reality today.

This story is about my mother-in-law and her Alzheimer’s Disease, about her care, and how our family of three siblings, two overseas and one in India, was unable to coordinate her care cordially for her sake.  All the players thought they were doing the best at that time.  It is about choices we all made in our lives and the consequences of those choices.  It is about Amma and Papa’s indomitable spirit in the face of overwhelming health problems. And how Amma and Papa suffered, and the situation shook up and shattered the fragile balance of our family.

My mother-in-law (Amma) was an energetic vital person with a love of life, family and friends.  When she got breast cancer, she fought it with her typical aplomb.  Doctors were amazed at her progress.  When the cancer came back in the bone, she fought it again.  Being a woman of a generation where she was more used to doing things for others than herself, she felt guilty at the money that was being spent on her treatment.  But she retained her fighting spirit.  She loved perfumes and on one of my visits informed me that she had given all her perfumes away as she could no longer smell. The doctors did not have an answer to that.

The first sign of her behavior problems came in Aug 2004.

But before I continue, let me explain the composition of our family. My parents-in-law (Amma and Papa) have three children. My husband is the eldest son; there is another son (my brother-in-law, Bhaiyya, who is the youngest) and one daughter (my sister-in-law, Didi, who is the oldest).  Both the sons live in USA.  Didi lives in Delhi.  In 2004, when the problems were first noticed, Amma was visiting Didi.  Bhaiyya was in India for a visit, which made it a packed house with various spouses and children. Amma got disoriented about where she was.  Bhaiyya took her to a doctor, who did an MRI, found some ‘anomalies’ and recommended some medicines, saying it would help her memory.  Amma refused to have them.  My husband, visited soon after and he, too, was not able to convince her to take the medicines.

But Papa insisted that she was mostly ok and this was just aging. He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.

When we would call Papa from the USA, he would tell us that Amma was forgetting more.  He told me this when I visited them in Delhi in Sep 2005.  I found Amma to be a little quieter.  She showed some signs of memory loss (asked where Didi  was and then recalled that she lived in another house).  But Papa  insisted that she was mostly ok and this was just aging.  He was a very tough person and wanted to appear even tougher to his children who lived far away so they did not worry.  Amma was a fun loving person, too.  The three of us drove to India gate and had ice cream.  It was, looking back, the last fun thing we did together.  My husband visited in Dec 2005 and they celebrated the parents wedding anniversary with Didi’s family.  Amma displayed most of her spirit and dry wit.  In spite of the fun they were having, my husband felt that Papa was trying to tell him something, but could not draw it out of him.  When my husband returned to the USA, he told me, ‘I guess Amma is having some memory loss but they are hanging in there’.

In those days, (2005) Amma and Papa were living by themselves in an apartment in East Delhi. Amma was 81 and Papa was 90.  They were tough, independent people.   All through Amma’s cancer treatment they handled the doctor visits to a hospital over 20 km away without help.  This was not a small feat in Delhi traffic.

Before I describe how Amma’s condition progressed, I’d like to digress a bit to explain the sibling relationships here, because these created unfortunate dynamics later and affected Amma’s care.

Didi (my husband’s sister) had a stressful life trying to earn a living for herself and her family by giving tuitions. My husband and I had helped her financially for many years, including financing her children’s education.  This had strained our relationship and resentment was building up towards ‘the rich brother and sister-in-law’ who had nothing to worry about. In their mind we had a perfect life in the US  – quite luxurious, and no financial responsibility as we did not have children.

Bhaiyya (my husband’s brother) lived in the US. My husband had put him through graduate school in the US, and supported his family financially for several years.  So there was the suppressed resentment from his side also towards us.

Around 2005, when Amma and Papa were living separately, and Amma had started showing some signs of disorientation, their face-to-face interactions with the three children were limited.

Didi was living in Dwarka, the other end of Delhi. She visited Amma and Papa about once a month and spent half a day with them. Bhaiyya would call Amma and Papa about once a week and talk for 15 minutes. He visited India once in six years because it was too expensive to travel with a wife and children.

We talked to Amma and Papa at least 3 to 4 times a week.  Papa would stay with the same story about Amma.  When we tried talking to Didi to find out more, she told us they were ‘fine’.  My husband tried telling her that she should take Amma to a doctor for a checkup.  She ignored it and continued with the status quo.

The turning point came in May 2006, when Didi went to an extended family function and saw Amma dressed in a non matching salwar kameez.  This made her take notice as Amma was ‘looking bad’ in front of so many other relatives.  She talked to Papa and the truth started to emerge.  In the last few months, Amma had been unable to take a bath herself.  She had no awareness of personal hygiene and would go out with uncombed hair.  Papa finally told us that she would wake up in the middle of the night and get violent with him.  All these symptoms were disturbing and completely new to us – we did not know what was happening to Amma.

What followed was a traumatic time for the entire family.  It was difficult to persuade Amma to go to a doctor – when she was taken to VIMHANS on a pretext, her first reaction was accusing ‘You people have brought me to a mental hospital’.  She was diagnosed with having Alzheimer’s Disease, something we probably knew at the back of our minds, something my husband had been saying for some time, and I did not want to believe.   Various medications were prescribed for this, the most notable one being Aricept.

It was quite clear that Amma and Papa could not live alone any more.  We managed to convince a very reluctant Papa  to move to Dwarka to be close to Didi. This happened in Dec 2006.  He still wanted to live independently, just be in a flat close by.

The move, though unavoidable, made Amma’s condition deteriorate more rapidly.  She was apprehensive about changing her home.  By the time she got to the new place, she was unaware of her new surroundings.  She stopped recognizing family members though she had some spurts of recognition.  It seemed like the change in environment had impacted her negatively.  There was a paid caregiver assigned to taking care of her and preparing the food.  Papa had taken over supervising the caregiver and managing the house.  Didi visited and checked on them when she could.  We, along with US based Bhaiyya, were paying the rent for the house, and for all the household and medical expenses.

I visited Delhi in Apr 2007.  It was a shock to see Amma even though I had been adequately warned on the phone.   Though she had lost the power of recognition, she could be very animated if someone talked to her.  She lived in her own reality, an extension of the life she had led.  It showed me that if a person in this condition could be kept engaged, their quality of life could be better.  Papa was running ragged but as tough as he could be.  He insisted on taking care of Amma, and giving her the medicines himself, something we were no longer confident he could do.  We had already had an earlier episode of him giving her the wrong dosage.   This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other.  They were living their destiny together.

This posed another challenge of care giving – two old people living together where one (Papa) could not and would not be separated from the other. They were living their destiny together.

In early May 2007, the paid caregiver left Amma and Papa alone in the house and took off for hours.  Papa tried to help Amma out of bed and they both fell.  As a result of the stress, he had a severe asthmatic attack.  He was always very careful about his health, but his lungs had been getting weaker in the recent years.  They called Didi, who rushed them both to the ICU.  And we got a call, one we would not forget for a long time.  My husband was coincidentally leaving for India in a day (looking back maybe it was fate?).  Soon after he got there, Papa passed away, no longer having the energy to keep going.  He was 92 and had stoically taken care of his wife during her illnesses for over six years.

Until now my husband, Didi, and Bhaiyya had been talking – any resentment between the siblings was well hidden.  Things took a dramatic turn after Papa’s death.  It became about control and stress about assets, though there were not that many assets to fight about.  Papa’s will transferred all assets to Amma, who was unable to act on her behalf.  Their bank accounts did not have any nominees, so were essentially frozen.  Being overseas it was difficult for us to figure out how to resolve this, and Didi had no interest in doing so.  I think she knew we would continue to bear the financial responsibility of taking care of Amma  and eventually their assets would go to her and her two siblings, the direct heirs.  This way her share would not be depleted.  She also probably thought that her brothers would relinquish their share to her as they ‘would not need it’, which probably would have been true had the relationships not deteriorated. It pains me to say this as I write this, but unfortunately we had enough reasons to come to this conclusion.

But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.

Amma had a bigger setback after the fall.  She lost mobility and now had to be moved to stay with Didi.   Didi had never treated her very well and this was the last thing Amma would have wanted.  But we could not take Amma to the US – once again we were confronted with the consequences of the choices we had made by moving that far away.  My husband agonized about it a lot.  I tried to console myself with the fact that at least she was not aware of what was happening to her.  But of course she was, at some level.  A few days after her fall, Amma contracted a urinary infection, developed a potassium imbalance and had to be hospitalized.  After being in critical condition, she recovered somewhat and returned home.  But this time she was unable to swallow and had a feeding tube inserted in her.  All this happened in the space of two weeks after Papa passed away.

Even the doctors started saying that her condition was terminal and using a feeding tube was unnecessarily prolonging her life.  Didi felt that she could not bear to remove it.  To be honest, even today I cannot begin to imagine what it would feel like to have to make that decision.  I can just quote something a friend of mine, who initially worked in nursing in the US, told me – ‘at some point it is not about what you feel and how it would affect you, it is about not making them unnecessarily suffer if there really is no hope’.  As we saw, it was easier said than done.

In the United States, a lot has been written and discussed about end of life decisions, living wills etc.  I don’t think it is that common in India.  Amma did not have one but we knew her spirit – she would never have wanted to prolong her life like this.  My husband felt very strongly about this – he also reiterated that Amma had told him in one of her coherent states (before the fall) that she did not want to live any more.  Since there was no written statement, the jury will remain out as to her exact wishes.  One could only surmise them.

The relationship of my husband with his siblings went progressively downhill after this.  We were the ‘evil ones’ who did not want Amma to live.  In  Jan 2008 my husband visited India to meet Amma. I visited a couple of months later, in March 2008–seeing Amma in that condition was something I would not wish on anyone. My husband made a trip again in early May 2008 by which time her condition was worse.  We also felt Didi was spending money with complete disregard to budgeting, as it was not her money.  Didi accused my husband of being unpleasant and interfering.  It did not seem possible to have any meeting ground, and the brother and sister were barely on speaking terms.

Amma remained on a feeding tube for one year.  It was removed by Didi three weeks before she finally passed away, at the end of May 2008.  It was an agonizing time for my husband and I, but we could not find a better answer.  All the siblings had to agree before something drastic like removing the tube could be done.  We got news of her passing away through a text message – neither Bhaiyya nor Didi had even bothered to call us.

Today, almost three years later, my husband, his sister, and his brother, are still not talking.  The distribution of Amma and Papa’s limited assets has still not happened, as we deal with processing of a succession certificate in Indian courts.  All we want to do now is honor their memory.   Without going into details about this, we feel betrayed by the way Didi handled this affair.

What are the lessons I take away from this?  Would we have done anything differently?  Here are some of my thoughts:

  1. If you have very independent parents, as they age, maintaining their independence versus having them move in with you because they need help, becomes a fine line.  By the time my in- laws desperately needed help, we could not get them their preferred kind of help, and they ended up depending on Didi.  It was too late to have them come live with us.
  2. I am aware that when parents move in with one of their children at a younger age, it poses its own challenges – I hear that from friends.  The younger people feel constrained and in some cases find the older people interfering.  The older people have their own opinions about how the younger ones lead their lives.  Some old people are not very nice to their children and daughters-in-law etc.  It is not always possible for everyone to get along.  But I would hope that most younger people would soften, as they see their parents get more vulnerable as they age, and then want to take care of them.  I was a strong proponent of my ‘independence’ when I was younger.  Today I feel it would be a small price to pay if I could make the later years of the life of my own parents better.  I have also observed from watching friends and relatives who have taken care of aging parents while they live with them, that this ends up being the best thing for the parent though it is of course often very hard for the younger people who are caregivers.
  3. These days, at least in the USA, we have more counseling help available on how to handle an Alzheimer’s/dementia patient.  But when that patient is living with their spouse, controlling the behavior of the spouse becomes equally difficult.  They are the same age group with less control over their responses and reflexes.  There are no easy answers to this.
  4. All personal paid care givers, nursing attendants require tight supervision.  Having them know that they are accountable to a younger person may help somewhat.  Without assigning blame, the neglect displayed by the paid caregiver proved to be a costly one for us.  She felt she had complete control of the house with two old people in it – there was not enough accountability.

    In fact I would say that this whole area of hired caregivers needs to be addressed (a topic for another write-up) – we could have personal online reviews of agencies to start with, for example.

  5. We have to find ways to have parents communicate all their problems clearly early so help can be obtained.  It is very generous of them to not want to bother their children, but they have to be persuaded that letting them know everything is the right thing.    I find that older people get even more diffident in their communication.  In my in-laws’ case, I think Amma and Papa might have been comfortable taking help from my husband and me, but we were far away, so they did not want to trouble us.  They were not so comfortable with their daughter, and their pride and self-respect prevented them from asking Didi for help except in desperate situations.  They were hurt by her indifference and had become sensitive.
  6. As loved ones start aging (I use that term because this could happen to anyone, not only old parents) we need to remain observant about changes in behavior and health conditions.  That may help in detecting problems early.   In Amma’s case, I believe all of us were in denial for some time about an upcoming serious problem.  It is too scary to confront, but somehow one has to find a way to persuade the person going through it, that it will help them.  In her case, given the treatments available today, treatment a year earlier may not have helped the inevitable progression.  But in the future there may be other options.  All the symptoms Amma had were new to us and we learnt as we went along.  We started educating ourselves as we went through it.  Years after Amma reported losing her sense of smell, I read an article describing the fact that this could be an early sign of Alzheimer’s.   It seems like new things are being discovered about this, which is encouraging.
  7. Above, I have included some background about sibling dynamics to analyze for myself what caused the relationship to deteriorate to a point of no return.  Maybe some things are very specific to our family situation.  Though we were not able to, I believe one should try one’s best to keep sibling relationships at a workable level.

End of life decisions, however tough, should be discussed at a time when it is not emotional, which is as early as possible.

  1. End of life decisions, however tough, should be discussed at a time when it is not emotional,   which is as early as possible.  Make a living will by the time you are 50.  Ideally don’t let what happened to Amma in the last year of her life happen to a loved one.
  2. In conclusion I would like to dedicate this to Amma and Papa.  Their indomitable fighting spirit and courage through the ordeals will always be an inspiration to us.

Thanks for sharing, Sarla!

[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.