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.

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

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

Please share some background information related to your family and situation.

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

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

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

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

Please describe the initial symptoms that your mother showed.

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

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

How did the family respond to such behavior?

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

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

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

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

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

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

What happened when your father’s health starting failing?

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

Your sister was the primary caregiver for seven years. Could you share data from this period of your mother’s care?

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

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

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

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

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

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

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

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

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

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

Can you describe the next phase of caregiving?

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

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

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

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

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

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

Please share how you got your mother diagnosed and how the family responded to it.

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

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

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

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

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

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

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

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

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

Please tell us about your family history of dementia.

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

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

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

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

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

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

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

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

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

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

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

What is the current care arrangement for your mother?

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

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

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

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

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

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

How has this past year of caregiving affected you?

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

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

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

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

What are your plans for the future?

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

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

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

Thank you for this detailed and frank interview, Nadira!

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

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

Long distance caregiving: a caregiver describes the challenges and her approach

Sudha (name changed) has a father with dementia. Though Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches. [note]

Please describe the patient’s state and the location and role of various family members involved in the caregiving.

My father is in his eighties, and has mild to moderate dementia. Some years ago he was treated for a mild ischemic stroke and mostly recovered. Last year he was treated for sodium deficiency and a very bad urinary infection.

My parents live in Noida, near Delhi. My older sister lives in a flat across from them. I live in Portland in the USA along with my husband. My younger sister, who is single, lives in Seattle.

Between us all, we have learnt to manage my father’s conditions, and his sodium level and urine are monitored regularly.

How is the caregiving coordinated between you siblings? How is the schedule decided, and how often and how are status updates exchanged?

My older sibling, who lives near my parents, checks on my parents once or twice a day for about 15 minutes.

I and my younger sibling live in the USA and both she and I call my parents morning and evening at different times. On good days I talk to my parents about what is going on in our lives. On a difficult day, I talk about their problems and offer support or a possible solution. I also visit India as often as I can, and so does my younger sister.

I talk to my younger sister or exchange emails with her almost every other day, especially if our parents are facing some problem, or something needs to be coordinated for them.

Please describe how work is distributed and coordinated between various paid help, and how absences are handled.

My father is mobile but needs a little help climbing stairs, walking to the bathroom etc. Two attendants, one day attendant and one night attendant, have been hired to help him with his activities. This is supposed to give 24 hour coverage for him and if one of the attendants does not come, the existing one stays on duty till the agency sends a replacement. Most of the time this arrangement has made sure that my father had an attendant to help him all the time. There have been one or two scary times when my parents were alone (without any attendant) for a few hours which luckily passed. The agency was severely reprimanded for this. There is a driver to take my mother or father wherever they need to go. There is a maid who does all the cleaning, cooking and house work. The maid has been the most erratic –it is very difficult to find maids to work for old people. When there is no maid, the attendants are paid extra to pitch in for some of the house work, and a cook and part time worker is hired. My mother has to manage all this, and it is quite hard sometimes.

Please describe which caregiving tasks are most difficult for your mother to coordinate or handle herself.

Managing too much help is hard sometimes for my mother , as these workers try to take advantage of old people’s kindness. I try to keep an eye on them, to the extent possible from a distance.

Sometimes my father is frustrated and angry because he feels a loss of control at not being able to do everything he used to do – going to the bank, handling his medicines etc. When he takes his anger out on my mother, it is very hard for her, though she is getting better at handling it. Fortunately my father is able to recognize what he has done and improve his behavior after some time. But it takes its toll on my mother, and me and my sister sometimes I have to keep counseling her to not take it personally.

…I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically

My mother handles all the household finances, paying bills etc. She is quite capable of doing it, but sometimes gets intimidated by my father who passes comments about the way she is doing it, because he used to do all this and does not like her doing it now. I manage the situation by telling my father that Mom is doing it because she also needs to learn how to do it. Fortunately over the last few years, I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically. This has significantly reduced the work required and my father has been happy about this also.

Which caregiving skills did you, your siblings, and your mother have to learn? How did you learn them?

All of us just learnt as we went along. Last year was very tough as my father had extreme anxiety and paranoia as a result of his illness. We learnt to identify the triggers which caused the anger and tried to avoid those situations from coming up. We also took the help of a psychiatrist and psychologist familiar with geriatric issues. Small doses of anti-anxiety medication helped a lot.

We also worked on training the caregivers in giving medication, personal care, handling behavior issues. We had to go through a number of very poor attendants before we found reasonable ones.

What sort of technology aids do you use to reduce work and smooth coordination?

All bills that can be paid electronically are set up for that. I mentioned investments being set up, so that very little is sent by paper letters, so there is less paperwork to manage. I am able to check their bank account online (from the USA) and monitor it for activity.

My parents have a computer and printer in their house. My father used to read email till about a year ago. Now he likes to use the computer do some reading and listen to music. I have set it up for him to do so easily.

I have also trained the attendant to operate the DVD player and MP3 player for my parents, so that my parents can listen to music or watch DVDs of their choice when they want.

I want to give this example of the cell phone phonebook. My father had been getting frustrated with his paper phone book as he could not always easily find the phone number of the person he wanted to call. Sometime earlier, I had entered all his important phone numbers in his cell phone and shown him how to dial a number from the cell phone phonebook. He had been thrilled with having a mobile electronic phone book. Being a scientist, he still gets excited about new technology. Last year my father was still a little disoriented on return from the hospital. But much to my surprise, he had grabbed his cell phone and called all the people he knew and chatted with them. He had remembered how to use his cell phone phonebook and found it easier than the method he had used all along!

To me this destroys the myth that all new technologies are hard for old people to grasp and they should not be ‘burdened’ with them. It is one of the myths our society has – ‘as you get older, you understand less’. I think a person with a curious mind can be kept engaged at any age with a little help. My father was a scientist by profession and even today loves to learn and use new things. I think he therefore enjoyed trying to learn about cellphones. I also feel some of the advances in technology can be very well utilized for old people who are losing some of their cognitive abilities. The tablet is another thing whose visual aids would work well – I have yet to buy one and try it out with my parents.

Please describe any systems you have in place so that your father’s care goes on smoothly.

All important phone numbers of family, friends, doctors, repair people etc. are displayed in a prominent place on the wall. There is a 7 day medicine organizer box which my older sibling fills up once a week. The attendants are trained to give the medicine from that box. The box is kept far away from my father. A medicine chart is made and updated as needed for my mother’s medicines and so far she fills out her 7 day organizer box herself.

Which other tasks do you need to coordinate for your ageing parents?

Between us siblings, we co-ordinate home maintenance, car maintenance, annual bills, rental of their property, regular doctor visits, occasional visits to other relatives and outings. I and my younger sister do many of these tasks remotely from the USA.

Between us siblings, we co-ordinate home maintenance, car maintenance, annual bills, rental of their property, regular doctor visits, occasional visits to other relatives and outings. I and my younger sister do many of these tasks remotely from the USA – we have learnt to work with the time difference between the countries. Setting up things to use the Internet for bill payments and managing investments has proved very helpful. We also discuss what needs to be done in my twice-a-day phone calls to India, and my frequent calls to my sister. I also visit India every few months and I have a long to-do list for each such visit. Similarly, my sister visits India whenever she can manage to get leave.

Has there been an emergency when none of the siblings were at home?

Fortunately not. There is a backup list of phone numbers of neighbors, taxi drivers, grandchildren to handle such a situation. Ambulance numbers are also readily available, though once when my sibling had to call an ambulance it took very long. We have tried to get numbers of more reliable ambulance companies.

Please share some particularly challenging instances of caregiving that you have tried to handle from USA. What works, and what did not?

The hardest thing about being so far away when there is a health crisis with my parents, is that everything seems so much worse. I have to overcome the feeling of helplessness and try to be of help. Times when my father has been in the hospital have been hard to handle, especially as some doctors do not react well to ‘these people from the US who think they are so smart’ questioning what they are doing and I have almost come to loggerheads with doctors over this.

I have found that what works is trying to stay calm and helping the parent handling the situation. Sounding too anxious does not work.

You have mentioned that you call twice a day, trying to listen and help, and also resolve various tasks. How does this affect your ability to pursue your other commitments and interests? Is there an impact on available time? Vacations? Are you able to set this aside while working on your professional commitments? How do you juggle the various roles?

I have to learn to compartmentalize the different things I do in my life and sometimes it is not easy. There are days when after I have heard something disturbing from my parents that I stay upset for some time. I try to manage that, and focus on my professional work during the day. I have dropped some things in my life(like keeping in frequent phone contact with a number of my friends, some interests) because I simply do not have the time now. I make sure I call at approximately the same time every day no matter where I am. If I am not able to, I either call them beforehand about the timing change or have my husband call. I do this even when we take short vacations usually within the US. Cell phones and internet have made communication a lot easier. At the moment any vacation I or my husband take away from work is spent in India with my parents. When I visit India, I also manage to do some of my professional work from there – again possible thanks to the internet.

Looking back, what things would you have done differently to make this phase of your life smoother?

At some level, I always knew my parents would need help as they got older. Though I have not lived with them since I was 16(I am in my late forties now), I have seen them regularly and been in constant touch. Both my parents and myself miscalculated the level of involvement the local sibling would have with them when my parents got older. At the back of my mind I felt reassured that one of their children was so close by, so never thought of making big decisions like moving them in with me (in the USA) or moving to India myself to take care of them.

People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough.

What caught me unawares was when I found we had been a ‘fair weather family’. Things were good when the going was good. But when my older sibling’s own family grew with children’s spouses and grandchildren, they became the sole preoccupation in her life. She also got more resentful because she felt our parents were not meeting some of her expectations. In my view, as children, all of us siblings should be past expecting something from parents – it is time for them to get something from us. I realized that I and my elder sibling were poles apart on this and many other issues. Strains appeared in the sibling relationships.

Looking back – I wish I could have anticipated this. I know hindsight is 20-20. People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough. Being hit with such mismatches suddenly, in the middle of a crisis, leaves you with fewer options.

What do you see as the practical considerations for moving in with your parents, or for making them move in with you?

My husband and I are still working in our respective careers and we need to continue to earn. At our age it is not easy to have careers/earnings by moving to India. Any such moving back to India and restarting a career here is best if done at a younger age. Also, one advantage of having earnings in the US means that I am in a better position to help my parents financially. Life in India is so expensive these days.

My parents could come to the USA to move in with me and my husband, but it is impossible to get health insurance for them in the US. With the exorbitant healthcare costs in the US, only a person with immense wealth could handle them. Had my parents moved to the US at a younger age, they could have become part of the system here and got insurance.

Many of your peers must be going through a similar phase with their parents’ care. Are there some other approaches others have used, and what are the pros and cons of these differing approaches?

Some of my Indian friends in the US moved their parents here when they were younger. Their parents got themselves busy with the US lifestyle and were also able to get insurance. This approach made it a little harder for parents, because they were younger and also more independent when they moved, and so they had to give up that independence to an extent. They had to make adjustments. But the children they live with made adjustments too, and accepted more constraints in their lifestyle. For such an approach to work, there has to be flexibility on both sides.

all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85!

Another American friend of mine who is divorced has her 98 year old mother in an assisted living home. Now this mother is at the stage where she needs constant monitoring, but a few years ago she could participate in social activities. The main flaw in this setup I hear, is that all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85! Regular visits by family help a lot. In my friend’s case they have a loving family of grandchildren and great grandchildren who visit. Unfortunately that is not true of many people in these homes who are left at the mercy of the services there. Placing parents in a home is an option only if you can afford it, or have bought long term care insurance – today the cost of a ‘full service’ assisted living place is $7000 per month.

Are their mismatches and misunderstandings between you and your siblings? What could have reduced the problems faced on these fronts?

Yes – these mismatches are basically due to personality differences and the different dynamic each of us has with our parents. With my older sister, it is the issue of control, more so because she was in complete control of her and my parents’ environment for many years. She sees the other siblings’ frequent visits as interference and a loss of control. She does not understand that the overseas siblings visit often because they feel enough is not being done for the parents’ caregiving.

The only way I have found to alleviate these problems is for each of us to handle different things and avoid discussions on controversial topics. It is not an ideal answer because often clear communication is needed, but that is the best I have been able to do.

Your father’s condition could regress further. You mother, too, is ageing, and may not be able to continue coordinating care for him. Do you envisage a more major move for yourself back to Noida, and what sort of compromises would that involve? What are your plans for the future?

Today if they need more help, my answer will be for me, my husband and my younger sibling to take turns with longer stays with them. Each of us would have to take more leave of absence from our work. As I mentioned earlier, it is not easy for any of us to completely move to India.

What would you say is missing in your parents’ life/care today?

If all the workers hired for my parents care are present, then all their physical needs are taken care of, which is a big help. What is missing is the emotional support, mental stimulation and engagement. That would be good for both of them. Attendants are not able to provide any mental stimulation for my father. Some of it we try to provide with TV, reading, music and talking to them on the phone. I and my younger sister, both of us try to give them some emotional support, but we live far away. My elder sister (who lives close to them) does not want to devote enough time to sit and chat with them about their problems/issues, but she does some required tasks for them as needed. Still, I tell myself that my parents are better off than many other old people, and for this I am grateful.

Today I see the merits of the joint family system – the old and the young helped each other. It started falling apart as people wanted freedom etc., but I think it is a good option for older people when they need more care, to be staying with younger people.

Any advice, lessons learnt, musings, in summary?

It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot.

  • Always hope for the best and plan for the worst.
  • It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot. Give them positive feedback on what they are achieving and make light of any mistakes they have made. Try to find new things that may interest them – you may be surprised at what you find. Recently my husband was talking to a 93 year old neighbor of ours who lives by herself. She was getting depressed and he showed her a baseball game schedule on his phone (she loves to watch baseball on TV). She was thrilled to see this new thing. This goes back to my theory about using technology gadgets/other new things to keep older people engaged.
  • I find it a pity that as a society we find old people an inconvenience. We should try to focus on what they can still offer – it may also make caregiving easier in the process. I know this thought does not apply when the person’s condition has advanced to a point where they cannot participate in anything. But let us at least not give up earlier than needed.

Thank you for sharing your thoughts and suggestions in such detail, Sudha! Long distance caregiving (also called remote caregiving or overseas caregiving) is very tricky, and your interview will be very helpful for many persons in similar situations.

[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.

Our presence here makes a difference to her: a son talks of supporting his caregiver mother

Ranganath Subramoney is a Dubai-based consultant. His father, now 86 years old, lives in Bangalore and is suffering from Parkinsonian dementia; the caregiving is being primarily  handled by Ranganath’s 78 years old mother, but Ranganath is in Bangalore ten days a month to help, besides remaining available over phone. Here Ranganath shares how he and his siblings try to ensure that their father is cared for, and their mother does not get overwhelmed. [note]

(Read the earlier interview of the mother)

Your mother has already described how care is being coordinated currently for your father by using a number of services (attendants for the day and night, and a dementia day care centre).

Yes, my mother has accurately described the modality used for my father’s care.

I’d like to add that while the use of attendants for the day and night is good in its form and function, any disruption in the availability of attendants throws my mother into panic.

For example, sometimes the attendant who is supposed to report for work calls up to say that he/ she will be delayed by a few hours, or that he/ she cannot come on that particular day because of some personal reasons. When my mother contacts the agency for a replacement, they tell her that they cannot send a replacement at such short notice, and need two or three days. The agencies supplying attendants do not seem to have the resource planning required to handle such emergencies. As a family, we are very severely inconvenienced by these situations. I am, frankly, not surprised at these problems because these attendants are required to work seven days a week and naturally need time off to attend to their own personal work and sort out their problems. A system of rotation of attendants may be more sustainable for agencies.

Another problem we face is that the quality of the staff sent varies a lot. Some attendants are well trained, others are not. Sometimes, the agency sends attendants who do not know how to do the work they have to do, and my mother has to instruct them in great detail and supervise them closely.

You spend ten days a month in Bangalore, and your siblings also visit as often as they can, but there are several days a month when neither you nor your siblings are in Bangalore. How does your mother handle problems and emergencies on such days?

My parents were amongst the first families to move into this apartment complex twenty years ago. We are fortunate that everyone in the building  knows us and is very helpful. For example, if the attendant is delayed, the watchman or lift operator will lift my father to or from the bed, and so on. Neighbours also step in to help whenever needed.

If the problem cannot be resolved with available help, one of us siblings comes here. My sister in Vizag is closest, and can arrive earliest in case of an emergency. Also, I have often wrapped up my work and come here within two days to help cope with the situation.

It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do.

My mother obviously gets very tense when there is a problem. She is alone, old, and frail. We encourage her to call us whenever she wants, however small or big the problem is. It helps her to know that someone is always available to listen to her. We, on our part, try to say the right thing so that she knows she has been heard, while also giving her suggestions on what she can do. We try to make sure she does not panic or feel helpless.

It is not just for setbacks that my mother needs support. The whole situation is overwhelming for her, and she feels better if she is able to talk to one of us, or to her sister or other relatives whenever she’s unhappy or worried. All of us are available to her over phone and we are very clear that large phone bills should not be a deterrent for her.

My sister talks to my mother every day. My brother and I talk to her two or three times a week, and this goes up to three times a day or more on the days when there is a problem. Basically, we do not want my mother to feel alone at any time.

We siblings also keep in constant touch with each other so that we remain updated on the situation and on my mother’s emotional state.

With all the phone calls between us and with my mother, I think the biggest beneficiaries of our situation are the telecom companies 🙂

How have you siblings been coordinating to share information and take decisions together? How do you share the work and responsibility?

I am based in Dubai. My brother is in Mumbai, and my sister in Vizag.

In the earlier days, when my father was being diagnosed and the treatment decided on, my siblings made frequent visits here to take him to doctors  and make decisions on treatment and medications and so on. My siblings would call/ e-mail and inform me almost immediately of what a doctor diagnosed or advised, or what the test results were. We also surfed the Internet extensively to understand what the doctors had said, and to research the suggested drugs (will they help, what are the side-effects, and so on). Whenever possible, we discussed to decide between options.

In those early days, because of the way my business was structured, I was able to visit only once every two months, and my siblings, being present on the spot more often, took the lead in the work and the decisions.

As my siblings are both working in jobs, they were not able to keep up the intensity of frequent trips to Bangalore because their leave got exhausted. Meanwhile, I redesigned my consulting work to make more time available for trips to Bangalore.

Currently, I am in Bangalore around ten days a month, and will be increasing this over the next few months. While I and my siblings continue to talk over phone and exchange e-mails very frequently, I am taking the lead in terms of decisions as I am on the spot more often.  I am able to understand the options better and see the impact of medications and can set the tone of what we do based on this.

I also make it a point to arrange my trips to Bangalore so as to overlap with my siblings’ presence here, so that we can meet face-to-face and talk about things.

How often are you and your siblings in Bangalore, and how do you plan to increase your availability over time?

My sister is currently looking after her father-in-law, a dementia patient in his late 80s. Because she already has her hands full with caregiving for her father-in-law, she is able to schedule only one trip every three months or so. However, being in Vizag, she is closest to Bangalore and therefore able to arrive here fastest in case of emergency.

My Mumbai-based brother manages a three or four day trip every six weeks or so, typically combining some leave with a weekend.

I am currently in Bangalore around ten days a month, an arrangement made feasible because of the nature of my work.

My work already includes travel, and my clients are used to getting my services mainly over phone and e-mail. Any face-to-face meetings with them are anyway scheduled in advance. I have reduced my overall work, and also told my clients about my reduced availability for face-to-face meetings.

<>I have been increasing my availability in Bangalore in a phased way. For the period around March 2009 to June 2010, I was here for five to six days a month. With my father’s state worsening, I ramped this up to ten days a month since July 2010. I am continuing to adjust my workload so as to increase my availability here, and by March/ April 2011, I expect to spend around three weeks every month in Bangalore.

In essence, I am relocating to Bangalore, and using this as the base of my work instead of Dubai, which means that I will be living here and traveling out of Bangalore when I need to visit other cities and countries for my work. My family will also relocate to Bangalore at a convenient point, in sync with the schooling year of my daughter.

…by increasing my availability here, I am increasing the amount of certainty every month.

The way I see it, when one of us siblings is in Bangalore, my mother gets an environment of support and certainty, and by increasing my availability here, I am increasing the amount of certainty every month.

Could you share your interactions with your father, and his current state?

In the earlier days, it took me an effort to remember that he was facing problems in understanding and responding. There would be times when I’d ask him to do something, such as “turn to your left side”, and he would do nothing even after I asked him a number of times. The natural tendency in such a case was to feel irritation and raise my voice, to lose my cool. But soon enough, it became obvious to me that he did not understand. I learnt, over time, to remember that he was not able to “receive” me when I asked him to do something, and to remain calm. If he did not respond, I would bend his legs and turn him over myself.

What took time was emotionally registering the fact that his condition was not curable.

Now, he hardly says anything on his own. If people around him do not talk, he stays quiet. But he does recognize people even if he does not participate. When visitors come, and are talking, he sometimes even says something–it may be something tangential, like “should I get you something to eat” (which he cannot do anyway). Sometimes, when there are people around him, he tries telling us a joke or sing a song. It is obvious that he enjoys company.

We try to make sure someone visits him every few weeks, so that he feels good and can enjoy their company.

Any overall comments about caregiving, long-term plans, and all that?

I think it is natural that family members have to adjust our lives to do what needs to be done. We all have to be ready to make such changes in our lives. Perhaps we should plan ahead for such a possibility, and be mentally prepared for it.

From what I have noticed, when I am in Bangalore with my mother, it makes a lot of difference to her. She is not tense about the care, and setbacks do not make her panic. She does not feel so lonely. I am glad I am able to increase my time here, with her.

Another thing is that my father, in spite of his state, responds to and appreciates company sometimes, and I am able to enjoy moments of interaction with him. Again, my trips here make that possible.

Caregiving for my father, and supporting my mother, is a concern our entire family shares.

All of us are concerned about my mother, who is not in a state to handle care alone, and we do not want her to collapse because of this stress. Hopefully our efforts to be with her for most of the month and thus reduce the “window of uncertainty” will help; she is definitely happier and more comfortable when one of us siblings is around.

I cherish and appreciate the collective concern and care displayed by all immediate family members. Over phone and  with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and  solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.

Over phone and with occasional visits , both my sister-in-law in Mumbai and my brother-in -law in Vizag, offer great comfort and solace to mother. Equally, my brother and sister call and visit Bangalore, and it all adds up.

My mother also needs to get breaks. We have been discussing the use of “respite care” for my father at specialized centres for some days a month (when none of us siblings can be around) so that my mother can visit her sister and other relatives during that time, and does not have to handle my father’s care alone.

After much deliberation we have recently taken the first step in trying this out. We have availed the respite care facility in Bangalore to place my father there for some days and brought my mother to Mumbai to spend some time with my brother and sister-in-law, hoping this will ease my mother’s stress levels and allow her to regain her composure and  strength (both have been depleted over the last 18 months).

Looking ahead, if this works well, we would probably execute this plan on a monthly basis, rotating mother’s stay with my sister, etc. confident that our father is being well cared for in the Nightingale respite care facility in Bangalore.

…but we are also determined to keep father with us, in his home, during remainder of the month when one of us is present along with my mother for the caregiving.

And so we learn, adjust, and act!

Thank you, Rangathan, for sharing in detail how the family is working together for the caregiving of your father and for ensuring that your mother is not overwhelmed by the caregiving.

[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.