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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.

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

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

Dementia Care Notes: Please give us some background information about the patient.

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

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

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

Dementia Care Notes: What is your role in the patient’s care?

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

Dementia Care Notes: What are the current symptoms?

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

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

Dementia Care Notes: Please describe the current care arrangement for the patient.

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

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

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

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

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

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

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

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

Dementia Care Notes: For which activities is the patient currently dependent?

Neena: She is dependent for every activity.

Dementia Care Notes: Please share some caregiving incidents that you found fulfilling/ heart-warming.

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

Dementia Care Notes: How supportive have relatives and friends been? How do they help you?

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

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

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

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

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

Dementia Care Notes: Do people around you understand dementia? Are they able to interact with the patient?

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

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

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

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

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

Dementia Care Notes: What sort of additional resources/ facilities/ services would help you in better caregiving?

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

Dementia Care Notes: Any other comments?

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

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

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

Thank you so much for sharing this, Neena.

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

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

A family recognizes dementia and adjusts for it: a social worker narrates her family’s story

Home > Posts > Interviews with Caregivers > A family recognizes dementia and adjusts for it: a social worker narrates her family’s story > Page 3
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Bharathi, 57 years old, has a degree in psychology and is a social worker who volunteers some time with dementia patients. When her 83 year old aunt started behaving strangely, she realized that the symptoms could be dementia, and gave the family brochures and literature on dementia. This led to a proper diagnosis and the family was able to learn how to help the aunt, who is now much better and happier. In this interview, Bharathi shares her story. [note]

Dementia Care Notes: Please share the salient events prior to the diagnosis.

Bharathi: My aunt and her family used to live in Vizag before they moved to Bangalore. My aunt is 83 years old. Her husband (my uncle) is 90 and very active and articulate (he writes stories). They live with their eldest daughter (60 years old) and her husband, who is 75 years old. Another daughter is in the USA.

Around eight years ago, Aunty lost her son, and this was a very big shock to her. She also started becoming forgetful, for example she would forget to switch off the gas. She put on weight. All this was diagnosed as a thyroid problem, and doctors said that the problem had probably been there for a long time. However, her forgetfulness continued even after treatment.

After coming to Bangalore, Aunty seemed worse. She fell down twice on her way to the bathroom one day. She was unable to get up the second time and became bedridden after that. Doctors who checked her said it was “old age” and that she might have suffered from a stroke or something like that.

Aunty deteriorated rapidly after that. Though she talked about old times, she sounded confused and was often unable to express her needs. She ripped off her diapers and soiled herself often. When her husband tried to clean her, she would get agitated. She also developed bedsores.

Aunty often shouted in those days, for example, shouting at Uncle because he was watching TV. She could not sleep at night and remained in an agitated state. Her voice also sounded different and more commanding, which alarmed and worried the family.

Another thing: Aunty could no longer tell what she was eating or drinking. For example, she could not make out whether she was having tea or coffee, and even immediately after a meal, she could not say what she had eaten.

The family was puzzled and worried by all this, and did not know what could have gone wrong. They felt she had totally changed, and suspected a mental problem.

I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia.

As my volunteer work included dementia patients, I knew how dementia changes people, and felt that this could be a possible explanation for Aunty’s change. I did not know how to directly tell the family what I suspected, but they are all educated people and willing to read and understand, so I gave them material to read about dementia. When they read what I had given, they also felt that this could be dementia, and decided to consult doctors to get a diagnosis.

Dementia Care Notes: Your aunt was placed under observation after the diagnosis, right?

Bharathi: By the time Aunty was diagnosed, the family was quite overwhelmed by the situation. They knew they would have to adjust many things to fit this diagnosis. Aunty had bedsores, she often shouted, she would not lie straight, and it was very difficult to clean and bathe her. They decided to place her under observation for a month at a specialized ageing and dementia centre where experts could observe her and help her improve while the family made the required adjustments.

Aunty’s younger daughter, based in the USA, was familiar with dementia. She came back to India to help. While Aunty was under observation, the family started understanding more about dementia. They learnt how they could communicate with Aunty and help her.

Uncle felt very lonely at home without Aunty when she was under observation. He felt he had no one left at home with whom he could share things. After so many years of living together, he was used to talking to her and he missed her a lot. But the family needed this time to adjust to this new phase.

Dementia Care Notes: How did the observation phase change your aunt?

Bharathi: Aunty had improved a lot when she returned home after the one month under observation.

One very important part was that she had stopped shouting. This had been a major problem earlier.

Another thing was that she was no longer ripping off her diaper, which made it much easier for the family to ensure that she remained clean and hygienic.

Her bedsores had also healed, and she was able to lie straight in bed.

Aunty also seemed much more cheerful and talkative, and was no longer agitated.

… when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month.

One thing, though. At the end of the one month stay, when the specialists were considering whether to extend her stay at the care centre, Aunty told them she wanted to return home and live with her family. She was very aware that she was in a hospital and not at home for that month. She has told us that she wants to stay at home with all of us around her. I think one reason she is more open to talk and listen is that she doesn’t want to be sent to a hospital. The very sound of an ambulance frightens her.

Dementia Care Notes: How is care given at home now?

Bharathi: The family, having understood that she has dementia, is now fully set up to help her.

For example, they now have a hospital bed for her, so that she can be made to sit up for meals and can also be lowered easily. They have put an air bed to prevent bedsores. They also have a nurse who comes during the day to bathe and clean Aunty and help in other chores.

In addition to this, the family has made a lot of effort to understand what Aunty is going through. They have adjusted their way of talking to her to take her dementia into account, and they have also learned how to help her. The daughter from USA is also working hard to see if she can help her mother improve.

One thing to remember here is that everyone in this house is a senior citizen. Aunty is 83, and her husband is 90. Her eldest daughter is herself 60 and caring for a bed-ridden patient is tiring for her. The eldest daughter’s husband is 75, and needs physiotherapy because of back problems. In spite of this, everyone is managing to take good care of Aunty now that they understand the problem.

Dementia Care Notes: How is your aunt doing now?

Bharathi: Aunty is doing really well now. She talks a lot about old times. Sometimes, she sings old songs. She also forgets a lot, but she admits that she is forgetting things, and sometimes asks when she will get better. She no longer gets angry or agitated, and is therefore easier to take care of.

Aunty loves to have her family around.

She still has problems in the way she understands the people around her. For example, she calls her daughters “akka” as if they are her sisters. She calls her husband “father”, but when she is asking us where he is, she will say, “Where is your uncle?” She is also not able to recognize the photograph of the son who died eight years ago.

But though she mixes up relationships sometimes, she knows we are all family.

But though she mixes up relationships sometimes, she knows we are all family. She recognizes us when prompted, and sometimes even otherwise. She particularly enjoys seeing her grandchildren. When people visit, she acts like a hostess and tells her family members to give them something to eat.

Aunty wants to get better. Currently, she is unable to wear specs and is lying down most of the time, but maybe, if she improves, we will be able to make her wear her spectacles and she will be able to see people and things better, and even read again. We are hoping this will be possible.

Another thing we are trying is to ensure that she does not have to cope with too many changes around her. It is possible that the move to Bangalore was a setback for her because of so many changes.

Overall, Aunty seems quite happy and positive, and the family members understand what she is going through and have changed their way of doing things so that she is comfortable and happy.

Thank you for sharing, Bharathi!

[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.

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

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

Over to Rukmini:

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

Background:

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

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

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

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

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

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

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

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

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

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

Nanima died a year later in that old age home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The denial about dementia continues even now.

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

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

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

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

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

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

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

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

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

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

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

Nanima’s behavior gets worse with every retelling.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you for sharing this, Rukmini.

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

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

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

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Nayantara (name changed) is in her forties, and lives with her parents because her father has dementia and her mother needs help in his care. Unfortunately, though her father has been showing strange behavior for years, and has been diagnosed with dementia, family members (his relatives and his wife) refuse to accept the diagnosis and insist that he is normal. When Nayantara tries to explain the problem, they accuse her of exaggerating, and sometimes even doubt her motives. They also accuse her of not taking care of her father, though they are not really willing to help. [note]

In this interview, Nayantara describes the situation and talks of the strange ways in which her father acts, and how she copes with the stress.

Dementia Care Notes: Please give us some background information first.

Nayantara: Father comes from a poor family. He has a physical deformity because of which his parents neglected him and were unwilling to pay for his education. Being a brilliant student, he funded his studies by taking tuitions for younger children. His childhood problems, however, left him an insecure person, prone to anger.

All those years we just thought he was a difficult man to live with.

Father’s strange behavior is something my sister and I have seen for many years, such as episodes of disproportionate anger and walking out of the house. My mother always considered them normal, and as they increased, we did not really think there was a problem and did not consult a doctor about them. All those years we just thought he was a difficult man to live with.

When I finally approached a psychiatrist because of some more problems we faced, the psychiatrist conducted tests on Father and gave the diagnosis of dementia. He told me that the dementia had probably been growing over the years and may have been the reason for the troublesome behavior earlier.

The diagnosis happened about three years ago, and Father has been getting worse in spite of the best care we are able to give. Earlier, he would walk a lot and talk to people; now he has withdrawn completely. Unfortunately, no one in the family believes the diagnosis and they treat him as a normal person and expect him to behave as one. This puts stress on him, because he is not able to remember the incidents they mention, and gets even more agitated. Once, for a period of a few weeks, he was convinced that I was trying to kill him. That was particularly traumatic for me, because people believed his accusations.

Currently, we have employed a full-time attendant so that he gets the attention he wants. He is relatively stable and withdrawn, and seems okay most of the time, but I am finding it a problem to balance caring for him and working to earn money to pay for the expenses we incur.

Dementia Care Notes: You mentioned earlier episodes of strange behavior, prior to the diagnosis. Please describe them.

Nayantara: Often, Father would get angry for trivial reasons. For example, if guests/ relatives had come over, he felt he was not getting attention the way he should, and would get furious. If someone else was served water first, he claimed he was being mistreated or neglected. In that mood, he would throw things (bottles, plates, whatever he could) or refuse to eat food.

He also started walking out of the house in anger. He would not come back on his own, and my sister and I would have to go around looking for him. Usually, he would always head for the park near our house, perhaps to make sure that we would find him and bring him back.

These episodes would upset everyone, and we would get angry at him after bringing him back, and he would yell back, and the whole mutual screaming would continue for two to four days before it subsided.

Sometimes, instead of getting angry and throwing a tantrum, Father would react to his perceived neglect by withdrawing totally and not talking to anyone.

Most of these episodes were related to there being a crowd in the house, such as for a family gathering or function.

All through these, my mother and others behaved as if this was normal behavior, and my sister and I also assumed this to be so.

Dementia Care Notes: What made you consult a psychiatrist?

Nayantara: Around three years ago, Father changed in many visible ways. One was that he became obviously weaker physically. He used to be so fond of long walks, but now he started spending hours at home, just sitting and looking at the wall. Though he had always been an introvert, his talking reduced to a level that was alarmingly low.

He also became very suspicious of everyone and everything, and talked as if everyone was conspiring to hurt him or rob him.

I felt this was not normal, and decided to consult a psychiatrist.

Dementia Care Notes: How did getting a diagnosis change things?

Nayantara: The main change was that I understood he had a problem and would not get so upset when he was angry or behaved in inconvenient ways.

Unfortunately, my mother and the rest of the family do not believe the diagnosis.

Dementia Care Notes: What does your mother say about his behavior if she does not accept the diagnosis? When he accuses you of mistreating him, does she believe his accusations?

Nayantara: My mother thinks Father is normal, and that all his behavior has been, and continues to be normal. She says his walking out of the house and not returning till we located him and brought him back, was normal. She believes he is still normal.

She does not believe his accusations, but has never stood up for me or defended me with him or with my aunts when he has accused me. Father always suppressed her, not allowing her to go out of the house or talk to people, and she has never developed the confidence of tackling him, so she does not know how to react to such accusations.

Dementia Care Notes: Please describe the incident where your father thought you were trying to get him murdered.

Nayantara: That was awful.

…my father became convinced that I had hired someone to kill him

I don’t know what prompted it, but my father became convinced that I had hired someone to kill him. He thought I was after his money. He told my mother; she did not believe him, but didn’t know what to say to him. He then called up his sisters in Hyderabad and they rushed over to Bangalore the very next day. He told them to go to the police immediately because his life was in danger.

My aunts began to scold me. They did not go to the police but started telling me that what I was doing was wrong and that I should not do such a wrong thing. They told me to transfer his money to their names and said that once I did that, they would look after him.

I felt very hurt, but I tried to stay in control, and told them that he was confused and not normal. They did not believe me, and kept saying I was cooking things up. I asked them to wait for a day or so and watch his behavior before deciding.

By evening, Father had started acting vague, and my aunts said that maybe there was a problem with him. I asked them to stay for another day to observe him but they said they had families to look after, and left that very evening.

I felt very bad that they had believed him and that everyone had gathered to curse me like that. I almost broke down.

Dementia Care Notes: But if they thought his life was in danger, wouldn’t they have tried to take him away from home first, instead of ‘scolding’ you? If they believed him even a little, would they have gone back and left him here, living with you?

Nayantara: I don’t know why they behaved in that way if they didn’t really believe him. The morning they came, they kept insisting that I transfer all the money to their account so that they can look after him, and when I refused, they seemed to lose interest. Maybe they spoke like that not because they believed him but because they thought he would be easy to look after and they felt he had a lot of money. I don’t know what they really believed or wanted; all I know is they kept saying harsh things to me and I almost broke down.

Dementia Care Notes: Did your aunts know of the diagnosis?

Nayantara: Yes, I had told them of the diagnosis, but they claimed I am exaggerating normal problems any old person has, just to get his money.

One thing is, Father’s behavior is not uniform. On some days, he seems almost normal. Also, when they visit for a short while, he seems normal, and his strange behavior becomes obvious only if they stay long enough, which they do not. Even if he behaves oddly, they say it is an occasional aberration, not a medical problem.

I have a medical certificate of the psychiatrist who has been attending to Father. When I told my relatives about it, they said I must have influenced or bribed the psychiatrist to give such a certificate and that I was trying to get Father declared mentally unfit to get his money.

I have stopped trying to explain that Father has a medical condition

I have stopped trying to explain that Father has a medical condition or that I have a formal diagnosis for him. What’s the point! Instead of believing me or trying to understand, they only start accusing me of things like wanting to rob Father! They are not willing to help but very quick to criticise.

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

Nayantara: Whenever my aunts talk to Father, he gets agitated because they remind him of something that disturbs him, or that he does not remember. They do not take his mental state into account while talking to him. I have requested them not to talk to him, but they continue to call him up once in a while, and every time they do so, he gets disturbed and becomes difficult to handle.

Dementia Care Notes: Has he often shown fear of attack and murder?

Nayantara: There was once a period of one-and-a-half month when Father thought that my mother was trying to kill him and would become very agitated if he saw her. For that entire period, my mother moved to my room and made sure that Father did not see her. As Father was mainly staying in his room all the time, we were able to do this.

Then, there was this phase when he was convinced that something was being stolen from his room every day. He would open and close his cupboard several times (all in the evening, after 6pm) to confirm that everything was still there.

Poisoning is another thing Father was very scared of. Once he stopped drinking milk for several days, claiming it did not taste the way it should and had been poisoned.

His paranoia was so great that for several months, he made it a daily routine that I should touch him and swear that I would not cheat him or kill him. He even insisted that I fall at his feet as part of this daily swearing. He made me write this on stamped paper as a guarantee and kept this paper carefully in his cupboard, as if that was protection.

Dementia Care Notes: Are there other strange behavior patterns you’d like to share?

Nayantara: Well, Father acts strange in many ways. Medicines, for example. He will keep acting suspicious of his medicines and say he wants a medicine changed. He refuses to take the old medicine, claiming it is ineffective, or that it will harm him. I therefore have to consult the doctor and get the medicine replaced, typically by another brand for the same medicine.

He seems very insecure in spite of all we do to keep him safe and happy.

Another thing that bothers Father is the thought of death. He is very scared of it, and cannot bear to see any death in any TV serial. He cannot even bear to see someone cry, and makes us put off the TV if there is a scene involving crying. He seems very insecure in spite of all we do to keep him safe and happy.

On some days, if I touch him affectionately, he looks happy. On other days, he reacts to that gesture with surprise and says, why, what’s wrong, am I dying?

Father’s disorientation causes all sorts of problems and it is not always possible to prevent them. For example, he likes to drink hot milk very early in the morning, and so I keep it in a flask. I heat it late at night so that it is still hot when he takes it at his usual time. One day he decided to have it earlier, just after I’d prepared the flask for him, and he poured the milk directly in his mouth instead of using the glass I keep near the flask. The milk was so hot it scalded him, and he spilled it over his body. As a result, he got boils in his mouth and all over his body and it took many weeks for the boils to go because he is a diabetic. We need to be very careful all the time, because he does not know what he is doing.

Sometimes, when I go out, Father feels uncomfortable and wants me back. For this, he complains of things that he knows will make me rush back. A few days ago, for example, I had gone out and I got a call from home that Father was complaining of severe chest pain. Though I suspected this was not so, I could not take any risk, and rushed back. I talked to the doctor, who said that there was a pill he needed to take if he genuinely had pain, but he should not take the pill if there was no pain. I took the pill to him and told him what the doctor had said, and Father just shrugged and said that he didn’t have any pain.

One more thing: Father is very good at hiding things. Because he wants to have money easily available, I have given him a thousand rupees. He keeps this money on him all the time. He even holds it in his hand when he is changing his clothes or having a bath. Sometimes, when he cannot hold it, he hides it in his room, but he always manages to find the money. He may tell the attendant looking after him where he has hidden the money, but he also instructs her not to tell anyone else or the money will get stolen.

Dementia Care Notes: Please share any incident which was heart-warming for you.

Nayantara: Once, my guru was supposed to come home for a visit. I was very tense as I thought Father would complain about me to him, telling him how bad I was, how I did not care for him, spilling out all those complaints as he did when his sisters came.

But when guruji sat down with Father, Father was very mellow. He told guruji that I was looking after him very well, and that I was a very good daughter and that he doesn’t have to worry about anything because I am there with him.

I was totally stunned by Father’s words, and very touched. I felt that, deep down, Father appreciates what I do, and so my effort is worthwhile.

Dementia Care Notes: Please describe your father’s current state.

Nayantara: Father is totally withdrawn now. Once, he would walk several kilometres every day, but now he stays in his room all the time. He does not try to walk out of the house any more; I think he is scared that we will not bring him back.

He also needs help for his normal activities, like batheing and eating. We have got a full-time attendant to help him, and I think that is good because he is very happy that there is someone with him all the time. He keeps telling her to do things, get me water, take the water away, put on the fan, put off the fan, fetch me the kerchief, keep it back, and so on. When he would do it earlier with my mother or me, we found it difficult to handle because we would have to drop whatever we were doing to attend to his demands, but this attendant is employed for just this work, and she is able to do what he wants, and he is happy he is getting the attention he likes to get.

Healthwise, Father also has several other problems. He has gastroparalysis, and is a diabetic and hypertensive. He also has vascular disease and is a cardiac patient. This means that we have to keep taking him for various checkups, and that is a struggle. Because of his dementia, he is often paranoid and wants to change doctors because he starts claiming that the current doctor is trying to poison him.

There are days when the situation depresses Father. In spite of all we are doing to keep him happy, he claims that he wants to die, and threatens to jump out of the window. That hurt me, because we are really doing so much to keep him happy. What else could we do? But he is not happy. We have taken precautions to make sure he cannot jump out of the window, but the fact that he thought about it made me very sad.

Dementia Care Notes: Please describe how you and your mother cope with the stress of caregiving.

Nayantara: I am fortunate enough to have a good circle of friends who understand my problems and I can talk to them and meet them. In addition to meeting friends, I love music, and I sing to overcome my stress. I have also found ways to feel more at peace about caregiving now.

My mother, on the other hand, feels neglected and lonely. She gets depressed if I go out of the house, and wants me to stay at home all the time, saying it is my duty to stay with her and not go out. I would earlier listen to her, but then I realised that I cannot pause my life because of this; my life has to go on in parallel.

Dementia Care Notes: You mentioned that you are more peaceful about caregiving now. Please share what has helped you do what you must do.

Nayantara: What has made the greatest difference is my de-personalizing the situation. Earlier, whenever I interacted with him, I thought of him as my father, and of myself as a daughter, and all sort of expectations and disappointments and hurts came in, because I did not want to be accused of all sort of things by my father. I expected affection, and there was none.

Now, before I go in his presence, I remind myself that he is a patient, and that I am like a nurse. That gives me the strength to take any criticism or agitation in my stride.

Father knows that I am more important in his care than others who work for him. When he has a problem, like when he thinks he is unwell, he calls me to tell me about it, though he may not tell my mother or the nurse. He will call me and tell me about his problem, and say I should take him to a doctor otherwise things will get worse. At that time, if my response is not the way he wants it, or if he thinks I am not paying attention or getting agitated, he also gets agitated. Once he gets agitated, he is extremely difficult to handle. Now I am alert about this, and am careful to be attentive and comforting when he voices a concern.

Also, when I feel he is getting agitated about something that I cannot help in, I move away before his agitation increases. He usually does not get so agitated with others, perhaps because he depends more on me. If I move away before his agitation is in full-swing, he forgets about his problem and becomes normal faster.

Dementia Care Notes: What are your plans for the future, with respect to caregiving?

Nayantara: Currently, having learnt so much about how to handle him, and also having found an attendant who is satisfactory, I am comfortable with the caregiving arrangement. It gets tiring on some days, and also stressful, especially when I have to rush him to a doctor or call a doctor home because he insists that his medication is wrong, but on most days, I can handle it.

…the care takes up so much time and energy that it becomes difficult to earn enough money

One concern I have is financial. I have to not just support my parents in terms of care and errands and all that, I also have to earn enough to support them financially. But the care takes up so much time and energy that it becomes difficult to earn enough money. I have to sometimes refuse work because I need to be there for my father. Also, I work from home, and cannot always do so when he is not well, or is agitated. As his state becomes worse, I do not know how I will get the time I need to care for him while also earning enough to pay for the care he needs.

Another area of concern is my own life. My parents expect me to make them the centre of their lives. My mother always says it is my duty to always be available at home, and behaves as if going out for even a few hours is some type of neglect of my parents. In the beginning, I would listen to her, but then I realised that I need to have my own life, too. But as the care increases, more and more of my own need for variety and my own “space” is getting affected, and I am not sure how I will balance all these along with earning enough money and also taking care of my parents.

Even so, I plan to take care of them to the best of my ability, as long as I can.

Thank you, Nayantara!

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

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

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.

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

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

Rajesh writes:

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

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

Briefly,

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

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

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

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

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

Learn about dementia and caregiving.

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

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

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

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

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

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

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

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

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

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

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

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

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

Try to reduce caregiver isolation

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

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

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

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

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

My advice to people is:

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

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

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

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

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

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

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

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

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

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

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

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

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

Functional support.

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

Here are some examples of functional support to consider:

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

In conclusion:

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

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

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

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

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.

When you are in the rut of things you can’t think: a doctor-caregiver shares

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Vidya (name changed) is a doctor whose grandmother (mother’s mother) suffered from dementia. Vidya’s mother and aunts took care of the grandmother, with some support from Vidya. The family finally reached a point when they could no longer handle the caregiving and had to move the patient to a long-term stay facility. [note]

Dementia Care Notes: Could you give us background information about the case and the sequence of events?

Vidya: Granny lived in my city for many years, staying with either my mother, or my aunt (my mother’s sister). The two houses were close by, and Granny would move from one house to the other whenever she felt like.

Granny suffered from a condition called Transient Ischaemic Attacks or TIAs. The first episode occurred when I was in medical school and I remember she was hospitalised. She recovered quickly and was back to normal. This was followed by one or two smaller episodes of shorter duration, during which she inadvertently passed water where she was sitting/lying. Apparently she seemed okay so it was not taken seriously.

Some time later, Granny took ill and started behaving bizarrely. For example, she once smeared her poo over the bed and the walls of the bedroom. We then called a psychiatrist friend who, after evaluating the patient, suggested that it could be a case of dementia.

As her other parameters were alright, we didn’t think it was necessary to take her to a hospital to assess her physical status and do investigations. Of course I did speak to a senior doctor at the time, who said that anyways nothing much can be done for such a patient.

But as time passed, the bizarre behavior worsened. At that time, Granny was living with my aunt, who was in her late sixties. My aunt found it very difficult to manage to take care of Granny on her own and we all decided to get some home-help. My mother employed a ‘nurse’ from a well-known organization in Kerala. With this, we started a phase where we used a number of such ‘nurses’ to care for Granny.

These nurses were not actually trained in nursing, so to say. They were just young girls in need of a job, who had taken on the task of caring for an ill person as best as they could, for a fee. Some of them had previous experience elsewhere. Some were good at heart, some were hygienic, others were not. We had to manage with what we got as we had no other source of home help.

After we began using home help, Granny continued to stay at my aunt’s place for a couple of years and then moved to my mother’s house for roughly a year and a half with the ‘nurse’.

The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems.

One major problem was that the ‘nurse’ would suddenly leave and go home for reasons best known to herself, or because she had finished her tenure (of max. 5-6 months at a time ). During the absence of the nurse, my aunt (or my mother) had to manage Granny’s care on their own. That was quite a task as Granny was a heavy woman. I lived separately, and though close by, I could only help sometimes with the care. The care was also hard to manage because my mother and her sister were both in their sixties and had their own health problems. Granny’s third and youngest daughter, (she was in her fifties) lived in another state; she would come many times to help her sisters with the care especially during the absence of the nurse.

Granny (along with the nurse) was next moved to the city where her third daughter lived. After living for a while with this daughter, Granny was moved to a long-term stay and care facility for older people where she passed away after three years.

Dementia Care Notes: Can you look back at the years between the possible onset of dementia of your grandmother and the point when it was formally diagnosed, and share with us what you think can be done to facilitate early diagnosis?

Vidya: The best possible thing to do is to keep evaluating the person’s health from time to time with proper assessment by qualified doctors and based on that , necessary investigations.

One could then try and control any imbalance of substances for instance-lipids. Or rule out other things like thyroid problems. There can be many things that need to be looked into. A proper control of various parameters could possibly slow the progress of the condition.

There are different causes of dementia as well that need to be evaluated. Perhaps there were other problems also that needed to be addressed in Granny’s case that could have made her better. And who knows, initially it may not have been dementia at all. I can’t be sure because I didn’t get all the parameters checked and I think I should have consulted someone else as well. But now, thinking back, we may have come to the definitive diagnosis too soon, too easily.

Dementia Care Notes: Often, people assume that if there is a doctor in the family, this doctor is responsible for, and will ensure that everything that is needed is done. As you are a doctor, did you experience this expectation?

Vidya: Well, my family did look towards me for suggesting the next, best step, but it was more of a responsibility that I felt on my own rather than it being implied or stated.

Dementia Care Notes: Did your professional background equip you sufficiently for what you needed to do? In what aspects of caregiving did it help? In what aspects was it of no particular advantage?

I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

Vidya: At that time, I thought that as I was a doctor, I had the advantage in caring for my grandmother. But now looking back, I’m afraid I wasn’t at all equipped for caregiving because our medical curriculum does not give any importance to the subject of older people’s health and how to deal with it.

Because of my being a doctor, I could get direct access to other doctors to discuss Granny’s condition. This was only of limited help as the city where we lived lacked facilities to provide actual care to older persons in her condition.

Dementia Care Notes: As a granddaughter, looking back to those days, can you share a couple of incidents that were frustrating or where you felt inadequate and helpless/ agitated?

Vidya: One such incident I would say was when Granny , not knowing what she was doing messed up the whole room with her poo and everyone was tired and frustrated with the cleaning and the awful smell. It was physically very demanding.

Dementia Care Notes: Can you share a couple of incidents when caregiving was fulfilling and heart-warming?

Vidya: On some occasions when Granny could recognise people around her I felt I could still feel her around with us, and it felt all worth while.

Dementia Care Notes: Your grandmother was finally transitioned to a long-term stay facility. Can you share with us the pros and cons that the family considered for the decision, and what the emotional impact of the decision was? What would you now advice people in a similar situation to think of?

Vidya: The decision to do so wasn’t easy because the whole idea was new to us – that of Granny being taken care of, away from us. It would mean seeing her less often and her being with people she didn’t know and who we hoped would be good to her.

But at the point of time, it had become physically impossible to take care of her in any of her daughters’ houses as they were old and had their own health problems. I lived in my father-in -law’s house so I couldn’t have Granny living with me. Besides, were we doing the best for her anyway? I don’t know. It was only gratifying to see that she was with family.

Each family has to make up their mind as to what and how much they can do and then take their own decision.

Dementia Care Notes: In your caregiving situation, your grandmother was looked after, turn by turn, by all her daughters. Do you have any tips on how sharing the care responsibility between diverse family members can be made smooth for both the patient and the relatives?

Vidya: I would say all three daughters shared in the responsibilities and tried to coordinate as much as possible, especially in the trying weeks when the caregiving nurse had completed her tenure and went back to bring a replacement.

Communication between the family members is the key to a smooth functioning of caregiving.

Dementia Care Notes: Is there anything else you wish to tell other caregivers?

Vidya: Looking back, I think that all of us in our family were not really prepared for the caregiving, though we did our very best. We didn’t know exactly what we were facing and what it could lead to. So we didn’t know what care was needed, and we didn’t plan for it. We fell in the turmoil of getting things done. For example, I didn’t sit back and think–What am I doing? Is this the right thing? Is there anything else? Maybe many other caregivers are in a similar position today, as we were then. Because sometimes when you are in the rut of things you can’t think….

I would advise caregivers to spend some time locating expert professional help to understand what sort of care will be required, and then to plan how they will give the required care.

Thank you for your time, Vidya.

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

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

My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband

Home > Posts > Interviews with Caregivers > My husband is a living doll: A 78-year-old wife taking care of her 86-year-old husband > Page 3
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Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm. [note]

Dementia Care Notes: Can you describe the events that led to your husband’s diagnosis?

Saraswathi: The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.

We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:

  • Losing balance while walking or climbing stairs.
  • Fits of anger and shouting.
  • Insisting on going for “work” (though he had retired long ago).
  • Insisting on going out for errands that were not needed (such as booking tickets at the railway station).
  • Insisting on getting updated bank and FD statements every few days, and wanting to go even on Sundays after I told him that the bank was  closed.
  • Going out alone without telling me, such as slipping out of the apartment when I was in the kitchen.

Our family doctor said my husband should not be allowed to drive. I therefore started hiding the car keys. My husband began insisting that the car keys be placed at the same place every day, and would refuse to eat if he couldn’t see the keys. He would shout at me.

I consulted a psychiatrist, who gave no formal diagnosis but started treatment. Eight months later, after it was clear that the medication hadn’t improved my husband’s condition, the psychiatrist recommended that I consult a neurologist. Around this time, my daughter noticed that my husband was leaning to the left while walking and holding his left hand awkwardly.

My husband was able to answer most of the questions asked by the neurologist (those usual what is 100 minus 7 type of questions), and scored seven or eight out of ten. The doctor diagnosed his condition as Parkinson’s, and prescribed medication to be given in addition to the medication already prescribed by the psychiatrist.

We had to go to Mumbai again for some work around then, and so we revisited the doctor we had first consulted. This senior doctor told us, “Stop all medication immediately. When a patient walks into my room I know whether he has Parkinson’s or not. Your husband does not have Parkinson’s”. He told us to continue only one medication, which was for calming my husband.

This became very confusing for us. We therefore consulted doctors in a large, reputed hospital in Bangalore, and they diagnosed my husband’s condition as Parkinsonian dementia. We continued their treatment for eight months. This hospital used a panel of doctors for attending patients, and every visit we would end up meeting a different doctor and have to explain the case again–this new doctor would either prescribe something new, or continue the old medication. I was unhappy with this arrangement as I felt it did not give us continuity. A senior doctor I shared this with advised me to switch to treatment under the local specialist who was closer to my house.

The symptoms my husband was showing at the time he was diagnosed formally were:

  • Abusing.
  • Shouting.
  • Poor balance and frequent falling.
  • Wandering without telling.
  • Often, he would fall and be brought back by neighbours.

We are, since then, continuing treatment under care of this specialist.

Dementia Care Notes: What was your reaction to the diagnosis?

Saraswathi: I found it unsettling that doctors came up with different answers, especially the Mumbai doctor’s insistence that this was just ageing and his emphatic way of telling us this was not Parkinson’s.

When the diagnosis was finally clear enough, I was deeply affected.

Till then I had heard of many diseases like hypertension, diabetes, stroke, but I had never heard of dementia. I tried to be strong enough to do what was needed, but when I was told that there was no cure, I felt mentally and physically down.

The doctors gave me information on care for my husband, but did not fully explain what to expect. They did not counsel me on my own stress management or how I could stay healthy as a caregiver. I myself am old and have health problems that have become worse with the amount of work and stress I am facing. I do not know what to do about these.

Dementia Care Notes: What is your husband’s current state?

Saraswathi: My husband has become very weak and lost weight. His ability to understand and do things has deteriorated a lot. He is usually on a wheelchair and needs help to be moved from and to the bed. He needs to be helped for everything. He does not seem to know me or any of the things in the apartment. He does not really know who I am.

It is like he is not there for me. He is like a living doll.

Dementia Care Notes: What is your current arrangement for caring for your husband?

Saraswathi: Though my children do not live in Bangalore, they have set up a “pukka” system to help me care for my husband.

Currently, I use the services of a day attendant, a night attendant, and a dementia day care centre.

The day attendant arrives at eight a.m. in the morning. The night attendant (who has been there since the previous night) leaves after the arrival of this day attendant. The day attendant cleans and bathes my husband, and gives him his breakfast and medication. Around 9:30 am, the vehicle from the dementia day care comes to pick up my husband, and my husband then spends his day at the dementia day care (six days of the week). He is brought back at 4:30 pm by the day care vehicle, and the day attendant attends to him till six, and then leaves.

The night attendant arrives at eight pm and takes over care.

For these two hours, from 6pm to 8pm, I have to handle the caregiving myself. This is extremely difficult because I cannot physically do anything for my husband. For example, I cannot push the wheelchair or lift my husband from the chair to the bed or vice versa. I am very scared of risking anything, because if I get injured, who will take care of me and my husband?

Sometimes I manage to make the day attendant stay for some extra time by paying him “overtime”, but he does not always agree because he has other tasks to do.

I have considered using a full-time attendant, but am hesitant because that would mean cooking for the attendant and that can also be a problem.

Dementia Care Notes: How satisfactory are the services you use?

Saraswathi: The availability of the dementia day care centre is a very big relief, because for those hours the centre’s staff takes over both the work and the responsibility.

At home, I definitely cannot do anything without the attendants. The work involved is very tiring physically, and on the days that the agency sends a female attendant for the night shift, we face a problem because she finds it difficult to lift and move my husband around.

The two hours every evening when there is no attendant are also extremely stressful for me, given my age and frailty.

There is one more problem; our apartment is full of a lot of things. My husband used to be very fond of buying curios and he decorated our post-retirement apartment with them–of course, they mean nothing to him now. Sometimes I find some items missing. I do not know which attendant took them, and have no way to prevent such thefts. That my things are getting stolen and I can do nothing about it frightens me and makes me sad. I find it stressful. I have moved my jewelry and other precious belongings to bank lockers, and use cheques for most payments, but I have to keep cash at home for emergencies, and am scared of theft.

Dementia Care Notes: As you are living alone with your husband, you must also be handling other work and responsibilities?

Saraswathi: Yes, I handle all the work required to manage our house and our finances.

Earlier, when my husband was alert and active, he handled the bank and investment work, and paying bills and all such errands and responsibilities. Now I have learned about all these things. I make the bill payments, get bank passbooks updated, and reconcile statements and do all such work.

I also manage the house, which means doing the shopping and cooking and other house work. I cannot sit back and relax, because I am responsible for everything.

Dementia Care Notes: This is a lot of work to do in addition to caring for your husband. At 78 years, frail, and suffering from medical conditions (diabetes, hypertension), this can be very stressful. You also seem to have lost weight over the last few months. Can you tell us about your emotional state?

Saraswathi: It is true that I have lost weight–over the last six or eight months, I have lost six kilos. My BP and sugar levels are also worse, and I think it is because of all the work and the tension.

While I am managing to do whatever is needed, I feel very tired and am not sure how long I can keep doing everything.  My children comfort me and tell me I must take care of myself. They are trying to see how they can take turns to come here so that I can have more days to relax.

Another reason I get stressed is that I am scared that something may happen to me. Suppose I fall down in the flat or fall ill? My husband will not even know anything. My children live in other cities; I have to depend on neighbours to call them. But who will know if something happens to me?  How will they know? Yet I am also scared of having a full-time attendant living with me. That will mean cooking for the attendant, and I do not want that work to get added to what I am already doing.

My husband’s state will get worse. I am not able to think clearly about how I will manage that. I do not know what I will do. I hope my children manage to come up with a solution.  Right now, I am just somehow continuing to manage my responsibilities.

Thank you for opening your heart to us, Saraswathi!

[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.

Dementia Care Notes