Tag: long distance care (remote care)

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

Home > Posts > Interviews with Caregivers > Long distance caregiving: a caregiver describes the challenges and her approach
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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]

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

Sudha: 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.

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

Sudha: 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.

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

Sudha: 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.

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

Sudha: 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.

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

Sudha: 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.

Dementia Care Notes: What sort of technology aids do you use to reduce work and smooth coordination?

Sudha: 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.

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

Sudha: 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.

Dementia Care Notes: 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.

Sudha: 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.

Dementia Care Notes: Has there been an emergency when none of the siblings were at home?

Sudha: 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.

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

Sudha: 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.

Dementia Care Notes: 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?

Sudha: 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 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.

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

Sudha: 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.

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

Sudha: 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.

Dementia Care Notes: 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?

Sudha: 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.

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

Sudha: 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.

Dementia Care Notes: 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?

Sudha: 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.

Dementia Care Notes: What would you say is missing in your parents’ life/care today?

Sudha: 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.

Dementia Care Notes: 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.

Sudha:

  • 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.

Remote caregiving: an arrangement, and issues faced

Home > Posts > Interviews with Caregivers > Remote caregiving: an arrangement, and issues faced
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David D’Souza lives in Bangalore. His mother suffered from Alzheimer’s Disease. Off and on for ten years, till she passed away, David and his siblings coordinated to provide care for his mother, who lived in a different city (where none of the siblings lived). Below, he shares the arrangement they used for taking care of his mother, and the problems faced. [note]

Dementia Care Notes: Please describe the arrangement for your mother’s caregiving.

David: There were two women hired to attend to my mother round the clock: Cooking, washing, batheing, washing clothes, cutting hair, cutting nails, dressing, accompanying her to Church during the first 5 of 10 years. Later my mother could not walk to Church so the attendants would walk with her in the compound of the house daily for about an hour.

When my mother became bed-ridden they continued the above and now added physiotherapy sessions every evening!

Dementia Care Notes: What were the key issues and problems that you faced?

David: In the first five years it was how to keep the attendants motivated. They seemed to be bent on extracting as much money as they could for their services. Later their dedication to my mother was unquestionable.

Another issue was arranging replacements when these two had to go on leave.

Yet another issue was that the family members and friends of the attendants also landed up at my mother’s house to visit their relatives.

…we ignored the issues of honesty of the attendants because they took proper care of our mother

The two attendants had the full run of the house, and at the end of ten years very few of the belongings, clothes, utensils and house decorations remained. But as my brothers, myself, and our families were all spread out in different cities, we ignored the issues of honesty of the attendants because they took proper care of our mother. It was an extremely small price to pay for the quality and dedication they showed to my mother.

Thank you for sharing, David!

[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.

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

Home > Posts > Interviews with Caregivers > Our presence here makes a difference to her: a son talks of supporting his caregiver mother
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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.)

Dementia Care Notes: 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).

Ranganath: 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.

Dementia Care Notes: 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. Please tell us how your mother handles problems and emergencies on such days.

Ranganath: 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 🙂

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

Ranganath: 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.

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

Ranganath: 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.

Dementia Care Notes: Please share your interactions with your father, and his current state.

Ranganath: 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.

Dementia Care Notes: Please share any overall comments about caregiving, long-term plans, and all that.

Ranganath: 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, Ranganath, 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

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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 a 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.

Dementia Care Notes