Sudha (name changed) has a father with dementia. Though Sudha has settled in the USA with her husband, she spends several months a year living in Noida to help her mother care for her father. In this interview, Sudha describes how she and her siblings coordinate long-distance care using frequent phone calls and visits, and also using technology to streamline the care. She describes the differing approaches of her and her siblings, and shares her thoughts on sibling mismatches. [note]
Please describe the patient’s state and the location and role of various family members involved in the caregiving.
My father is in his eighties, and has mild to moderate dementia. Some years ago he was treated for a mild ischemic stroke and mostly recovered. Last year he was treated for sodium deficiency and a very bad urinary infection.
My parents live in Noida, near Delhi. My older sister lives in a flat across from them. I live in Portland in the USA along with my husband. My younger sister, who is single, lives in Seattle.
Between us all, we have learnt to manage my father’s conditions, and his sodium level and urine are monitored regularly.
How is the caregiving coordinated between you siblings? How is the schedule decided, and how often and how are status updates exchanged?
My older sibling, who lives near my parents, checks on my parents once or twice a day for about 15 minutes.
I and my younger sibling live in the USA and both she and I call my parents morning and evening at different times. On good days I talk to my parents about what is going on in our lives. On a difficult day, I talk about their problems and offer support or a possible solution. I also visit India as often as I can, and so does my younger sister.
I talk to my younger sister or exchange emails with her almost every other day, especially if our parents are facing some problem, or something needs to be coordinated for them.
Please describe how work is distributed and coordinated between various paid help, and how absences are handled.
My father is mobile but needs a little help climbing stairs, walking to the bathroom etc. Two attendants, one day attendant and one night attendant, have been hired to help him with his activities. This is supposed to give 24 hour coverage for him and if one of the attendants does not come, the existing one stays on duty till the agency sends a replacement. Most of the time this arrangement has made sure that my father had an attendant to help him all the time. There have been one or two scary times when my parents were alone (without any attendant) for a few hours which luckily passed. The agency was severely reprimanded for this. There is a driver to take my mother or father wherever they need to go. There is a maid who does all the cleaning, cooking and house work. The maid has been the most erratic –it is very difficult to find maids to work for old people. When there is no maid, the attendants are paid extra to pitch in for some of the house work, and a cook and part time worker is hired. My mother has to manage all this, and it is quite hard sometimes.
Please describe which caregiving tasks are most difficult for your mother to coordinate or handle herself.
Managing too much help is hard sometimes for my mother , as these workers try to take advantage of old people’s kindness. I try to keep an eye on them, to the extent possible from a distance.
Sometimes my father is frustrated and angry because he feels a loss of control at not being able to do everything he used to do – going to the bank, handling his medicines etc. When he takes his anger out on my mother, it is very hard for her, though she is getting better at handling it. Fortunately my father is able to recognize what he has done and improve his behavior after some time. But it takes its toll on my mother, and me and my sister sometimes I have to keep counseling her to not take it personally.
…I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically
My mother handles all the household finances, paying bills etc. She is quite capable of doing it, but sometimes gets intimidated by my father who passes comments about the way she is doing it, because he used to do all this and does not like her doing it now. I manage the situation by telling my father that Mom is doing it because she also needs to learn how to do it. Fortunately over the last few years, I and my sister have simplified their investments so that they are self-managing with returns getting deposited automatically. This has significantly reduced the work required and my father has been happy about this also.
Which caregiving skills did you, your siblings, and your mother have to learn? How did you learn them?
All of us just learnt as we went along. Last year was very tough as my father had extreme anxiety and paranoia as a result of his illness. We learnt to identify the triggers which caused the anger and tried to avoid those situations from coming up. We also took the help of a psychiatrist and psychologist familiar with geriatric issues. Small doses of anti-anxiety medication helped a lot.
We also worked on training the caregivers in giving medication, personal care, handling behavior issues. We had to go through a number of very poor attendants before we found reasonable ones.
What sort of technology aids do you use to reduce work and smooth coordination?
All bills that can be paid electronically are set up for that. I mentioned investments being set up, so that very little is sent by paper letters, so there is less paperwork to manage. I am able to check their bank account online (from the USA) and monitor it for activity.
My parents have a computer and printer in their house. My father used to read email till about a year ago. Now he likes to use the computer do some reading and listen to music. I have set it up for him to do so easily.
I have also trained the attendant to operate the DVD player and MP3 player for my parents, so that my parents can listen to music or watch DVDs of their choice when they want.
I want to give this example of the cell phone phonebook. My father had been getting frustrated with his paper phone book as he could not always easily find the phone number of the person he wanted to call. Sometime earlier, I had entered all his important phone numbers in his cell phone and shown him how to dial a number from the cell phone phonebook. He had been thrilled with having a mobile electronic phone book. Being a scientist, he still gets excited about new technology. Last year my father was still a little disoriented on return from the hospital. But much to my surprise, he had grabbed his cell phone and called all the people he knew and chatted with them. He had remembered how to use his cell phone phonebook and found it easier than the method he had used all along!
To me this destroys the myth that all new technologies are hard for old people to grasp and they should not be ‘burdened’ with them. It is one of the myths our society has – ‘as you get older, you understand less’. I think a person with a curious mind can be kept engaged at any age with a little help. My father was a scientist by profession and even today loves to learn and use new things. I think he therefore enjoyed trying to learn about cellphones. I also feel some of the advances in technology can be very well utilized for old people who are losing some of their cognitive abilities. The tablet is another thing whose visual aids would work well – I have yet to buy one and try it out with my parents.
Please describe any systems you have in place so that your father’s care goes on smoothly.
All important phone numbers of family, friends, doctors, repair people etc. are displayed in a prominent place on the wall.
All important phone numbers of family, friends, doctors, repair people etc. are displayed in a prominent place on the wall. There is a 7 day medicine organizer box which my older sibling fills up once a week. The attendants are trained to give the medicine from that box. The box is kept far away from my father. A medicine chart is made and updated as needed for my mother’s medicines and so far she fills out her 7 day organizer box herself.
Which other tasks do you need to coordinate for your ageing parents?
Between us siblings, we co-ordinate home maintenance, car maintenance, annual bills, rental of their property, regular doctor visits, occasional visits to other relatives and outings. I and my younger sister do many of these tasks remotely from the USA.
Between us siblings, we co-ordinate home maintenance, car maintenance, annual bills, rental of their property, regular doctor visits, occasional visits to other relatives and outings. I and my younger sister do many of these tasks remotely from the USA – we have learnt to work with the time difference between the countries. Setting up things to use the Internet for bill payments and managing investments has proved very helpful. We also discuss what needs to be done in my twice-a-day phone calls to India, and my frequent calls to my sister. I also visit India every few months and I have a long to-do list for each such visit. Similarly, my sister visits India whenever she can manage to get leave.
Has there been an emergency when none of the siblings were at home?
Fortunately not. There is a backup list of phone numbers of neighbors, taxi drivers, grandchildren to handle such a situation. Ambulance numbers are also readily available, though once when my sibling had to call an ambulance it took very long. We have tried to get numbers of more reliable ambulance companies.
Please share some particularly challenging instances of caregiving that you have tried to handle from USA. What works, and what did not?
I have found that what works is trying to stay calm and helping the parent handling the situation. Sounding too anxious does not work.
The hardest thing about being so far away when there is a health crisis with my parents, is that everything seems so much worse. I have to overcome the feeling of helplessness and try to be of help. Times when my father has been in the hospital have been hard to handle, especially as some doctors do not react well to ‘these people from the US who think they are so smart’ questioning what they are doing and I have almost come to loggerheads with doctors over this.
I have found that what works is trying to stay calm and helping the parent handling the situation. Sounding too anxious does not work.
You have mentioned that you call twice a day, trying to listen and help, and also resolve various tasks. How does this affect your ability to pursue your other commitments and interests? Is there an impact on available time? Vacations? Are you able to set this aside while working on your professional commitments? How do you juggle the various roles?
I make sure I call at approximately the same time every day no matter where I am.
I have to learn to compartmentalize the different things I do in my life and sometimes it is not easy. There are days when after I have heard something disturbing from my parents that I stay upset for some time. I try to manage that, and focus on my professional work during the day. I have dropped some things in my life(like keeping in frequent phone contact with a number of my friends, some interests) because I simply do not have the time now. I make sure I call at approximately the same time every day no matter where I am. If I am not able to, I either call them beforehand about the timing change or have my husband call. I do this even when we take short vacations usually within the US. Cell phones and internet have made communication a lot easier. At the moment any vacation I or my husband take away from work is spent in India with my parents. When I visit India, I also manage to do some of my professional work from there – again possible thanks to the internet.
Looking back, what things would you have done differently to make this phase of your life smoother?
At some level, I always knew my parents would need help as they got older. Though I have not lived with them since I was 16(I am in my late forties now), I have seen them regularly and been in constant touch. Both my parents and myself miscalculated the level of involvement the local sibling would have with them when my parents got older. At the back of my mind I felt reassured that one of their children was so close by, so never thought of making big decisions like moving them in with me (in the USA) or moving to India myself to take care of them.
People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough.
What caught me unawares was when I found we had been a ‘fair weather family’. Things were good when the going was good. But when my older sibling’s own family grew with children’s spouses and grandchildren, they became the sole preoccupation in her life. She also got more resentful because she felt our parents were not meeting some of her expectations. In my view, as children, all of us siblings should be past expecting something from parents – it is time for them to get something from us. I realized that I and my elder sibling were poles apart on this and many other issues. Strains appeared in the sibling relationships.
Looking back – I wish I could have anticipated this. I know hindsight is 20-20. People often assume they have a good relationship with their siblings. I would advise them to try to look for, and anticipate, cracks in the relationship that could occur when the going gets tough. Being hit with such mismatches suddenly, in the middle of a crisis, leaves you with fewer options.
What do you see as the practical considerations for moving in with your parents, or for making them move in with you?
My husband and I are still working in our respective careers and we need to continue to earn. At our age it is not easy to have careers/earnings by moving to India. Any such moving back to India and restarting a career here is best if done at a younger age. Also, one advantage of having earnings in the US means that I am in a better position to help my parents financially. Life in India is so expensive these days.
Had my parents moved to the US at a younger age, they could have become part of the system here and got insurance.
My parents could come to the USA to move in with me and my husband, but it is impossible to get health insurance for them in the US. With the exorbitant healthcare costs in the US, only a person with immense wealth could handle them. Had my parents moved to the US at a younger age, they could have become part of the system here and got insurance.
Many of your peers must be going through a similar phase with their parents’ care. Are there some other approaches others have used, and what are the pros and cons of these differing approaches?
Some of my Indian friends in the US moved their parents here when they were younger. Their parents got themselves busy with the US lifestyle and were also able to get insurance. This approach made it a little harder for parents, because they were younger and also more independent when they moved, and so they had to give up that independence to an extent. They had to make adjustments. But the children they live with made adjustments too, and accepted more constraints in their lifestyle. For such an approach to work, there has to be flexibility on both sides.
all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85!
Another American friend of mine who is divorced has her 98 year old mother in an assisted living home. Now this mother is at the stage where she needs constant monitoring, but a few years ago she could participate in social activities. The main flaw in this setup I hear, is that all these older people who are put together in an assisted living home do not know each other. It gets harder to make new friends as you get older – imagine having to do it at 85! Regular visits by family help a lot. In my friend’s case they have a loving family of grandchildren and great grandchildren who visit. Unfortunately that is not true of many people in these homes who are left at the mercy of the services there. Placing parents in a home is an option only if you can afford it, or have bought long term care insurance – today the cost of a ‘full service’ assisted living place is $7000 per month.
Are their mismatches and misunderstandings between you and your siblings? What could have reduced the problems faced on these fronts?
Yes – these mismatches are basically due to personality differences and the different dynamic each of us has with our parents. With my older sister, it is the issue of control, more so because she was in complete control of her and my parents’ environment for many years. She sees the other siblings’ frequent visits as interference and a loss of control. She does not understand that the overseas siblings visit often because they feel enough is not being done for the parents’ caregiving.
The only way I have found to alleviate these problems is for each of us to handle different things and avoid discussions on controversial topics. It is not an ideal answer because often clear communication is needed, but that is the best I have been able to do.
Your father’s condition could regress further. You mother, too, is ageing, and may not be able to continue coordinating care for him. Do you envisage a more major move for yourself back to Noida, and what sort of compromises would that involve? What are your plans for the future?
Today if they need more help, my answer will be for me, my husband and my younger sibling to take turns with longer stays with them. Each of us would have to take more leave of absence from our work. As I mentioned earlier, it is not easy for any of us to completely move to India.
What would you say is missing in your parents’ life/care today?
If all the workers hired for my parents care are present, then all their physical needs are taken care of, which is a big help. What is missing is the emotional support, mental stimulation and engagement. That would be good for both of them. Attendants are not able to provide any mental stimulation for my father. Some of it we try to provide with TV, reading, music and talking to them on the phone. I and my younger sister, both of us try to give them some emotional support, but we live far away. My elder sister (who lives close to them) does not want to devote enough time to sit and chat with them about their problems/issues, but she does some required tasks for them as needed. Still, I tell myself that my parents are better off than many other old people, and for this I am grateful.
Today I see the merits of the joint family system – the old and the young helped each other. It started falling apart as people wanted freedom etc., but I think it is a good option for older people when they need more care, to be staying with younger people.
Any advice, lessons learnt, musings, in summary?
It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot.
- Always hope for the best and plan for the worst.
- It is very hard to see parents aging or see a parent/loved one with dementia symptoms. In moments of despair, try to focus on the things that they can still do, and forget what they cannot. Give them positive feedback on what they are achieving and make light of any mistakes they have made. Try to find new things that may interest them – you may be surprised at what you find. Recently my husband was talking to a 93 year old neighbor of ours who lives by herself. She was getting depressed and he showed her a baseball game schedule on his phone (she loves to watch baseball on TV). She was thrilled to see this new thing. This goes back to my theory about using technology gadgets/other new things to keep older people engaged.
- I find it a pity that as a society we find old people an inconvenience. We should try to focus on what they can still offer – it may also make caregiving easier in the process. I know this thought does not apply when the person’s condition has advanced to a point where they cannot participate in anything. But let us at least not give up earlier than needed.
Thank you for sharing your thoughts and suggestions in such detail, Sudha! Long distance caregiving (also called remote caregiving or overseas caregiving) is very tricky, and your interview will be very helpful for many persons in similar situations.
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.