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 y 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.

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.

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.

I think addictions are choices, and that my father chose to continue his habits… He got hypertension, suffered transient ischaemic attacks (TIAs) that are basically small strokes… All these were brought on by his choices.

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.

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.

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. 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.

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?

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.

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.

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.

. 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.

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.

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…

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 …But there was nothing. My father could not say what had happened to the money.

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.

…I was looking at an electricity bill and trying to decide whether to pay it or buy groceries…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…

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.

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.

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…When the silver was over, I started selling the gold.

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. 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). …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.

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?

I would call my brother who would assure me he would be there by the weekend to take father back. … 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.

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. 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.

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 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 rarely calls (and my sister-in-law never calls) to ask about how I am faring, and so forth.

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.

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: 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 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.

…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 my job…. 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.

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. 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.

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. Some weeks ago, my computer’s Internet connection stopped working… 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.

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.

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.

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.

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. Sometimes I call up friends just to hear another voice, or to hear myself speak.

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.

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.

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.

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.

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, 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. 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,

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.

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.

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.

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?

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 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.

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!

« Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates

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.

2 thoughts on “Dementia caregiving can create chaos: a solo caregiver describes challenges faced on multiple fronts”

  1. Dear Ritika
    Why don’t u try a Hospice which will take good and professional care of your father and leave u with more time for yourself…..

    You can spend more time for increasing your earnings and keep visiting your father at regular intervals too….

    Regards

    1. Dear Pushpa,

      Thank you for commenting and sharing your thoughts.

      As far as we know, most hospices have very clear criteria of whom to admit (Ritika’s father is unlikely to meet those criteria). Also, they are typically designed for cancer patient care. The other alternate is respite care, but these are typically very expensive and the overall capacity for respite care facilities suitable for persons with dementia is very low (around 200 across India).

      If you are aware of suitable hospice care/ other long-term stay facilities that someone with dementia can be placed in, please do share the information; it would be very helpful, not just to Ritika, but to others looking for such stay facilities.

      Again, thanks a lot for caring enough to add a comment, and do let us know if you have information on any specific place.

Comments are closed.