A dementia caregiver shares her story and her caregiver wishlist

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.