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A dementia caregiver shares her story and her caregiver wishlist

Home > Posts > Interviews with Caregivers > A dementia caregiver shares her story and her caregiver wishlist
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Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver. [note]

Dementia Care Notes: Please describe the patient’s state, how long you have been caregiving, and what your current caregiving involves. Tell us who else are involved in the care, and how the work is distributed.

Kalpana: My mother was officially diagnosed with dementia in May 2009 at age 78, though the symptoms were there at least two years before that. She is currently in the middle stage of dementia – she cannot read or write, does not recognise us, cannot bathe herself without guidance, has to be helped to eat, for example, she has to be shown how to handle the spoon. Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum gets delusional in the evenings, and begins talking to the fan or the cupboard, and says she wants to go home.

Mum’s dementia onset probably occurred after my father passed away in 2004. I have been looking after her for about 2 years now.

There have been two major setbacks in these two years.

  1. She developed malaria and fell down in the toilet in August 2010. She grew more disoriented after that, and the malaria medicines and accompanying nausea were very difficult to handle.
  2. She fell after two seizures in July 2011.

Currently, my caregiving work giving involves constant supervision day and night.

Mum does not like to be left alone; she has a room of her own and I sleep in the balcony leading out from her room. I have two maids: one works from 9am to 7pm, and the other from 8pm to 8am. The morning maid sees that Mum performs her morning ablutions and has a bath. This maid gives Mum her breakfast. Mum is made to walk up and down the corridor every two hours. They play catch with a large soft ball. Mum listens to music. If the weather is OK, she takes an evening walk in the garden below our building. On Sundays, my husband and I take her to a sea-facing park to sit by the sea.

The night maid prepares and gives Mum her evening meal, after which Mum is given a glass of milk and a fruit. This night maid sits and strokes Mum’s hair till she sleeps.

My role is mainly supervision or helping on days when Mum will not listen to the maids to swallow the tablet etc. I coax her gently, and most times, she responds. The maids take leave roughly once a fortnight or when they are unwell, and I am the replacement maid.

My husband supervises the day maid to see that the food and exercise is timely. My son’s role is limited to a daily hug. If Mum has been awake all night, I ask him to sit with her the next day as and when he is free. My son is a final year law student, currently working as an intern, so that means that apart from study, he works a 9 hour shift.

Dementia Care Notes: What are the most challenging problems you face currently as a caregiver?

Kalpana: The sheer grind and drudgery of caring, as well as mounting expenses and decreasing income.

It is scary to think of what the situation will be 10 years down the line when I will be 65, my husband 80, and my mother, 90. Will I have the same amount of energy? Will I be able to still work and pay the staff I will require? And will I get staff?

When I first employed the maids, I was paying each of them Rs.250 per day per shift. I now have to pay Rs.270 for that same work. This works out to over Rs.16000 per month, and if you add the doctors’ fees plus medicines, it would be Rs.18000 to Rs.20000.

It is scary to think of what the situation will be 10 years down the line when I will be 65, my husband 80, and my mother, 90. Will I have the same amount of energy? Will I be able to still work and pay the staff I will require? And will I get staff?

Dementia Care Notes: What is your wishlist as a caregiver, in terms of what you would like from various support systems and persons around you?

Kalpana: Before I write this I must emphasise that I write it only from my viewpoint. I do understand that many of the items that I wish for may not be feasible or practical, so to some extent this will be a one-sided viewpoint.

  • Government sponsored awareness ads on TV about the symptoms of dementia along with how to care for them.
  • More well-run memory clinics at Government hospitals could be sponsored and run by corporates or NGOs.
  • Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff. I understand that most of the existing staff will be very reluctant to retrain but if it is a well-run program it will be successful.
  • Government should check on Ayah bureaus and rates should be fixed ( as per labour laws for 9 hours a skilled worker in a hospital gets Rs.200 per day, and a semi-skilled Rs 185) .
  • Government -NGO collaborated day care centres at least 4 for each big city with payment based on your ration card; you pay more if you are in the high income group. .
  • Medical council should write to all their members about dementia – and this should be followed up by NGOs who visit GPs area wise with a presentation and pamphlets.
  • Using lists of GPs available from the medical council, the NGOs and volunteers should follow up with GPs regarding dementia awareness and resolve any queries that GPs have. This follow up could also be a research project along with colleges and Pharma companies ( who will benefit by increased detection).
  • From Pharma companies, dementia medicines available in syrup form as most patients have problem in swallowing tablets.
  • From NGOs, work with ALMs (advanced locality Management) to set up a volunteer base of elders who will check up on those needing help in their locality. Actions taken could be something as simple a home visit to cheer up a dementia patient or an elderly person.
  • Senior citizen groups could also help by arranging home visits to dementia patients.

Dementia Care Notes: That is quite an exhaustive wish-list. Could you select a couple of items that would make a great difference to you and improve your ability to care/ balance your life around the caregiving?

Kalpana:

  • Lowering of ayah bureau rates.
  • Help from senior citizen groups for home visits. There are several senior citizen groups in Mumbai, particularly amongst morning walkers. Maybe they can form a home visit group and engage patients and other elderly immobile persons who are home-bound, by doing activities like singing songs with them or playing simple games. This would really help in my Mum’s case because she is so lonely at times and she would like to be part of a chattering, jolly group.

Dementia Care Notes: What about help from neighbours, friends, and relatives? Do you have any wish-list regarding that?

I’ve realised that I have to ask for appropriate help rather than expecting them to read my mind.

Kalpana: Regarding wish-lists of what neighbours, friends, and relatives can do to help us, I think getting such help depends on us. I’ve realised that I have to ask for appropriate help rather than expecting them to read my mind.

For example, I have asked my sis in Bangalore to call every alternate day and just talk to Mum; my sister can tell her what she cooked that day, what her daughter (Mum’s granddaughter) is doing, and other simple stuff which cheers Mum up a lot. My mistake earlier was that I did not realise that my sis did not have a clue as to what Mum needed because my sis is not there on a day to day basis.

I now also plan to rope in a few of Mum’s friends to call her and just talk simple stuff. Earlier they used to say (about Mum), “Oh she never responds” and then they would stop talking to her and it would be just me giving them an update on Mum’s health.

Dementia Care Notes: You have been caregiving for 2 years now. How (if at all) has the caregiving environment and support changed in these years?

Kalpana:

  • The memory clinic (free) at Nair Hospital has closed down – so I will have to find a doctor. That is a negative.
  • Expenses have shot up and income is not keeping pace. Worry about inflation affecting my budget.
  • Age catching up with me – how will I cope if I fall ill?

Dementia Care Notes: Any other comments/ suggestions?

…caregivers are not superhuman; we cannot be oozing with the milk of human kindness always. Just like everyone, we also have our good and bad days.

Kalpana: I feel that whilst highlighting awareness of dementia, people should also acknowledge the caregivers contribution. Most of us caregivers already feel so useless at times seeing our loved ones sliding into oblivion, and though there may be some caregivers who are careless or indifferent, there are so many other caregivers who struggle and try their level best to do what’s right.

Also, people should acknowledge that caregivers are not superhuman; we cannot be oozing with the milk of human kindness always. Just like everyone, we also have our good and bad days.

Encourage us so that we are uplifted to strive harder. Please try, once in a while, to walk in our shoes.

Thank you, Kalpana, for sharing your situation, and all the suggestions and the very interesting wishlist. Let us hope that professionals and policy makers will act on these very valid suggestions and support dementia and its care more effectively.

[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.

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

Home > Posts > Interviews with Caregivers > 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.

Remote caregiving: an arrangement, and issues faced

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

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

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

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

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

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

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

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

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

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

Thank you for sharing, David!

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

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

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

Home > Posts > Interviews with Caregivers > 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
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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