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]

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.

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.

What are the most challenging problems you face currently as a caregiver?

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?

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

Before I write this I must emphasise that I write it from 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.

From the wishlist…
…Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff.
…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 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.

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?

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.

  • 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.

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.

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.

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

  • 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?

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.

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.

Please try, once in a while, to walk in our shoes.

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.

« Long distance caregiving: a caregiver describes the challenges and her approach She would simply hold on to me for support: a husband cares for a wife with dementia »

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.

16 thoughts on “A dementia caregiver shares her story and her caregiver wishlist”

  1. Hello Kalpana, a CG salute to you [that’s a caregiver’s salute] for the wonderful efforts and tremendous love and care that you all are giving your mum. I look after my 81-year old dad since Nov 2OO9, and along with his kidney problems he has been showing increasing signs of dementia over the years. Just four days ago he couldn’t stand up and we were admitted to hospital [I stay with him in hospital too since my sibling is in Delhi, hence the ‘we’] and yesterday the neurosurgeon said he suspects vascular dementia, the MRI results are in today.

    My brother plans to shift us to Delhi, so we can live nearby and there are more resources at hand. I was averse to leaving my beloved Pune but after this movement issue I realize the challenge will be very tough alone. I realize this not only because of my own experiences of being increasingly stretched out, lack of sleep, my own financial tensions, reduced time to work since I work from home etc. but because I am on an Indian caregiver’s online support group called Care Circle, where two of the members have caregiven for dementia, and one is still doing so.

    Their sharings have benefitted me immensely and since last night when the neurosurgeon said he strongly suspects vascular dementia, I know what I may expect. Knowing that I have their ongoing support on the Care Circle e-group is literally a rock that I can and have been leaning on. Both of them are far more experienced caregivers than me and their encouragement and understanding of what exactly I am going through makes for a great comfort zone in times of stress. All I can say is may God continue to give all of us strength [including financial, emotional and any other variety we need] on a daily or hourly basis as needed, along with a hefty dose of good cheer.

  2. This was so revealing, Thank you for showing me how a day in the life of the care-giver looks like. I think we really need to deal with not just each day, but each hour without bitterness, remorse, a sense of hopelessness and lost cheer.. that’s half the battle won. Also, care-givers need their daily release hours from the routine, as a must, and do things they really like.. one needs to add a conscious measure of quality to one’s life…

  3. Suneetha – I have met several caregivers – some at the Dignity Daycare centre and one of my neighbours and the ones who have been dealing with this for a long period of time have this almost otherworldly look almost as if they have been thro’ a trial of fire and emerged better for it. Can’t really say that I have reached that Zen like point as yet but I have come to terms with it and haven’t lost my sense of humour ( as yet)!

  4. Hello Kalpana. My left wife developed dementia after multiple cardiac and cerebral infarcts and so she had to be provided with care for her physical feebleness as well as dementia. I gave up my flourishing career and retired to give her full time care. I did this as I did not want her to be handed over to ayahs or nurses and in retrospect, I am glad that I did. I gave care for her for seven years and today when I myself will need care with a major surgery coming up, I miss her presence as during the previous four occasions, she was with me during the hospitalisation and post surgery recovery at home. Having gone through that experience, being a care giver now for my mentally and physically agile 94 years father is a cake walk except for the clash of two strong personalities. He fell down earlier this year and fractured his femoral head and hospitalisation, recovery with round the clock attendants at home took quite a toll on me and my worry now is that when I will be incapacitated, if something like that were to recur, there will be total chaos. We cannot anticipate what is likely to happen in the short or long term, and to keep my own sanity, I have learnt to take life one day at a time. If there is anything that I can do for you in Pune, do let me know.
    Ramana

  5. Hi Kalpana,

    A caregiver myself for my mum in law, now 86, I know are going what you are going through. While it is very satisfying to know that we are doing so much for our parents, physically and emotionally its extremely draining. If you can try to check the website of dignity trust near Pune. As Indians we cannot think of old age homes but maybe thats where we are all headed. And its not a BAD idea. My own mother is now a resident of an assisted living facility near Calcutta. She is 86 but active with ayah support. She loves to stay there because she has friends all her age and that has actually improved her health and actually cured her depression she developed when she was livivng with my brother and his wife. Currently she is “visiting home” but wants to go back to her friends because she has no company at home. Fom what i have read this old age facilty has a separate block for patients like your mother.
    Also take care of yourself because thats critical. All the best.

    1. Hi Supriya,

      Could you provide me some information about the assisted living facility near Calcutta for my mother who suffers from dementia?

      Thanks in advance.

      1. Hi Sanjoy,

        I’m not sure whether Supriya will see the comment and respond, but meanwhile, you can check out dementia resources in Kolkata at this page: http://dementiacarenotes.in/resources/city-wise/dementia-kolkata/ and also contact ARDSI Kolkata to see if they have any suggestions (contact details on the Kolkata page)

        Best of luck, and in case you learn of some new resource, please share it here or on the Kolkata page, so that other caregivers can also benefit.

      2. Hi Sanjoy,

        I give below the link for THE Peace, a lovely place for the elderly. Dr Dipankar Dutta set it up. All the tel numbers are given in the site. Although I font think they are specifically for dementia care I remember there was a lady who had some issues and was well looked after as a resident.

        http://www.peaceliving.com/home.html

        I do hope this helps

        warm regards

        Supriya

      3. Supriya, thanks! Another caregiver who contacted PEACE LIVING told me that is for general aged people and not for ones with ailing problems, especially like dementia/ parkinsons, schizophrenia etc. So while it is possible that they take good care of someone having problems (such as those we see in dementia), they may not be admitting someone formally diagnosed with it. Sanjoy, please do check out for yourself, and if possible, share back what you find out.

  6. Thanks Ramanna for the offer – right now I am managing quite well. The Hyderabad Heritage Elder Care services are sending me a full time attendant tomorrow so I will be training a new person all over again!Thanks Supriya – I know of the Dignity centre at Neral but that is super expensive – 15 lakhs deposit plus Rs.18000 per month. Will check on the one at Pune.

    1. Ms. Malani:
      I came across your comment. We are thinking of using Heritage in hyderabad for my parents, but we could not find any reference.How good are the people they send and are they reliable? Did you send you someone in Pune or in Hyd. Please reply back if you get this message.

      Thanks,
      SRao

  7. dear ms.kalpana,
    i am a psychiatrist and also president of calicutchapter of ardsi.there are syrup formulations of donepezil available.syrup donep[alkem] and dispersible tabletamazil[emcure].for memantine,there is admenta md[sun]which is melt in mouth.be careful of symptom of vomiting when initiated on donepezil.please follow your doctor’s advice.hope this info is useful.in {}are the names of the pharma which is marketing the said products.
    minoo

  8. My experience with Heritage Hyderabad wasn’t too good but I can only talk about the one attendant who came to my house. This is what i gathered from the attendant –
    1. they are not given any specific training apart from giving injections.
    2. as they have quite a number of enquiries and presumably less attendants they send the attendants even though they may not be willing to work, also the attendants are not relieved as per schedule.
    3. Basically it would be up to us caregivers to train the attendants as per our specifications.
    4. the attendant who came to my home was quite resentful as Heritage paid her only Rs.7500 of the Rs.12500 that I had paid.
    But again I have to add that have the experience of dealing with only one attendant – it is possible that some of the others are better and to give them credit when I complained they refunded the full amount to me.

    (Dementia Care Notes adds: This was the experience of an individual family. For all such posts, site visitors are requested to evaluate the facility’s suitability and reliability themselves to decide whether it suits their needs. Some evaluation suggestions are included at http://dementiacarenotes.in/caregivers/toolkit/using-trained-attendants-for-dementia-home-care/ and at http://dementiacarenotes.in/caregivers/toolkit/using-services/)

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