Two years down the line: Care for a bedridden mother with dementia

My mother often told me stories when I was a child; while I have forgotten the details, some images linger on. Like the one of a delicate, sweet princess who was so loved and pampered that she never had to put her feet down on the floor.

It is almost two years now that my mother has been the princess now, bedridden as she is, and in late-stage dementia. We try and give her all possible comfort though she rarely utters a word to explain what she wants. I am not sure she feels pampered, though. For it is not by choice that she lies on bed and cannot even turn, nor is her silence her choice.

I have described this stage of my mother’s dementia in previous posts (you can read the entries chronologically is you check out the page here, and read from bottom up (sorry, but that’s the way blogs work). The milestones are covered in A new phase of caregiving: a bedridden mother, Ramblings on love, hate, and a life worth living, A year later: One year of care for a bedridden mother, Enjoying fun time with my mother, Keeping her happy: Challenges of late-stage dementia care,and Some days are good.

But as we complete two years, it is perhaps time for another update, even though nothing drastic has happened.

Most volunteers and organizations who aim at supporting family caregivers of persons with dementia focus on early and mid-stage dementia. Challenges tackled are typically related to agitation, wandering, aggression, and other difficult behavior, and volunteers counsel caregivers on preventing or coping with these, or on enriching the life of patients through reminiscence therapy and activities and things like that. Caregiver manuals typically skimp over late-stage care, possibly because in many countries, patients in this stage are cared for in institutions.

Not so in India, where almost all care for all stages happens at home.

Back to my situation, and that of my mother. Life is at a crawl now. My mother sleeps bulk of the time. She wakes up for a minute or two when we change her diaper or underpad, and then she sleeps off again. She is woken up for mealtimes; she dozes off mid-meal, the soup still “pocketed” in her mouth, and she has to be prodded awake several times during a meal to make sure she swallows the food and opens her mouth for more. If she is too sleepy, we defer the meal or just give up half way.

My mother keeps having problem swallowing, and not just at meal times. She cannot swallow her own saliva and it keeps going down the wrong way. One can sometimes hear the gurgle of droplets of saliva going where only air should go. Her attempts at clearing her throat are feeble, and she does not have the energy for vigorous throat-cleaning. She gets chest infections easily, and is placed on antibiotics. Though we keep her in a highly protected environment, she somehow manages to get infections.

Bath time is again a very gentle cleaning time—she is so fragile. A princess, really.

Her skin is soft and generally okay, but there are a few places where there were small wounds, and those parts are brittle and keep cracking open, and we have to be extra careful to keep them free of infection.

Earlier, she would cooperate when we were cleaning her, but now she stiffens up, and it is strenuous to move her in bed, turn her, or clean her. We have to be gentle but firm. Hygiene is critical given her susceptibility to infections.

One of the things I would enjoy earlier was sitting with her and talking to her. Around March, she had stopped responding much to stories, but she had improved again. She is back to her silent mode now, and does not seem to enjoy company. It is rare for her to hold hands and squeeze them in recognition. Listening to even a few sentences exhausts her, and she goes back to sleep. She no longer stares at the photos we have placed near her. Part of this may be because she is usually on some mild medication to keep the chest clear, but given how frequently she gets infections, the gaps between bouts of medication are few indeed.

It is only once or twice a week that she responds to a”hello” with a “hello”. The maximum we manage to retain her attention is around five minutes, and usually she closes off her eyes in less than that. The only sound she makes is a coughing one, and in a Pavlovian way, we dread the onset of another infection. A small throat-clear sound is enough to make heart rates soar to levels hitherto reserved for energetic aerobics.

Her state is not too different from what I have described earlier, but perhaps that is itself news–that someone old and fragile and needing such care can decline so very slowly over so many months…

I have no way of knowing if she is happy. She does not seem unhappy (there is no frown or anger or sorrow on her face). She just seems sleepy all the time, and disinterested even when not sleepy. Again, I do not know whether this is a phase or a slide down.

When she was still in mid-stage dementia, and having moods swings, despondence and agitation, I met someone whose mother was bedridden. I said to her, it must be very difficult. Not at all, she said. Now it is very simple. We turn her every two hours. We wake her up twice a day to feed her and clean her. If she seems unwell, we call the doctor who lives down the road.

My mother is still slightly better than that stage, but I understand what that lady said. The difference between mid-stage care and late stage care is really huge.

Even our whole environment at home is different.

Games, labeled photo albums, her doll, her folder of grandson letters, all are shelved. The wheelchair gathers dust.

Now we are set up for a different kind of care.

The apartment is full of paraphernalia like nebulizer and hospital bed and air bed and stacks of diapers and disposable underpads and what not. We have learnt bed making with draw sheets, giving sponge bath, using Listerine for oral hygiene. Stacks of pillows are used to make sure she doesn’t press knee bone against knee bone and stuff like that. Shelves are full of disposable gloves, cotton, surgical spirit, Betadine powder and lotion, talcum powder. There are monkey caps for the cold, kitchen mitts so she does not scratch herself. Buttons have been removed from sweaters so that they don’t press against her skin. One learns every day. I discovered a few days ago that a torn plastic undersheet can be stitched using my home Singer sewing machine.

We buy several kilograms of Ensure and ORS-L, we buy Dettol in five-liter carboys, buy cartoons of diapers and underpads and get bulk rates, and  you should see our chemist beam when he sees us. He probably counts on us when planning EMI payments for home loans.

I know that this calm decline is the best we can expect. My mother, as I keep telling people, is sort of stable. I also know that, stable as she is, her ability to cope with illness is on the decline and even one severe infection or setback could be too difficult for her to recover from.

The other part of this type of decline is that the emotional connection is less. She is there and yet not there for me, with me. I try to sit near her, but she is just dozing all the time. Most of the time, because she does not seem to care whether I am there or not, and it feels like I am intruding. She does not either smile or frown when I touch her hand. Sometimes I think of that caregiver who told me, “Oh it is very simple now,” and I think I now remember that edge of unstated sorrow in her voice, the one that said, yes, care is smoother but something is missing, lost forever…

Caring for my mother also involves a constant worry about doing things right, protecting her from infection, fear of a greater problem. Part of the “game”, so to say. But that occasional smile or squeeze of hand, her occasional nod when I’d ask her whether I should talk to her/ sit near her–stuff that compensated–is something I truly miss.

She is slipping away.

It is possible that she will again “come back”, as happened some months ago. It is also possible that she will not. Looking back at the two years, I see the ups and downs, yes, but the direction is clear, and it is downwards.

I sometimes meet people who ask me, is she still bedridden, as if they expect her to have been cured and to be walking around again. Others ask me (in a veiled, indirect way), is she still…you know, “with us” (they mean, is she alive)?

Yes, she is still with us, though I am not sure she knows it most of the time. Yes, she is still bedridden. And yes, we continue to lose her bit by bit. It is a very different type of losing compared to the phase just a few years ago. In those days, one sensed her struggling to remain present, to remain alert, even as her problems proved to be major challenges. Now there seems to be no emotional desire or struggle. She winces when in pain, and resists when we try to move her or clean her, but those seem to be reactions to immediate physical stimuli, and not the struggle to remain present that was there just a few years ago.

Meanwhile, around us, there are others ageing yet active, and there are deaths. Many persons who knew her and were her peers are now no more. We are lucky she is still with us.

I just wish she knew it, too.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

20 Responses to Two years down the line: Care for a bedridden mother with dementia

  1. nishi says:

    dear swapna

    i went through your anniversary blog about your mother.i appreciate every word that you have written.it shows the immense love care and respect you have towards your loving mother ,who today is unaware of all that is going around her.she can never understand the situation that she is at present.the selfless love care and abundant attention that you and your husband give her can never be expressed through mere words.it has to be felt,if at all one wants to find out the actual quantum of love,sacrifice of time and patience that you shower towards your mother.
    i,at this juncture is spellbound…tongue tied for words….swapna you are a marvellous soul.my prayers are always with you.please count on me for any small help or any kind of help you need from me.last but not the least a small poem from me for you……

    to mother…..from every daughter

    For all that you have given me,
    I can return but love. For you
    Bound up the wounds I did not see
    And gave me hopes and passions new.

    I can return but love for you,
    Whose unmoved faith my heart did move,
    And gave me hopes and passions new,
    And loved me till I turned to love.

    Whose unmoved faith did my heart move?
    The mother of my heart, not blood,
    Who loved me till I turned to love.
    And I became the soul I would.

    The mother of my heart, not blood,
    Bound up the wounds I did not see.
    And I became the soul I would
    For all that you have given me.

  2. austere says:

    I was here. I read this.
    I have no words.
    Sorry for being so brittle.

  3. Shashie says:

    Hey Swapna, reading and mentally gearing up 🙂 you are like a senior whose notes I get to read to prepare for the next exam. God prosper all your efforts for they bless us all.

  4. Lora says:

    Thank you for these blogs. My mom has been bedridden for close to two years. She also has dementia. Watching the decline is very hard, especially when I remember where she was two years ago. Reading your brave words has helped me. I am alone with mom 24/7 except for about 8 hours a week when a sitter stays with mom so that I can run errands or go grocery shopping. I am blessed to be able to be there for her although she no longer knows me. Mom is also choking on her saliva and is starting to sleep longer than the 20 hours which were normal. It seems she goes in and out of phases. One phase ends, such as not eating and another begins, such as sleeping more. I wish I could know if she is content and what else I can do for her. The fear of her passing during the night is a daily occurrence every morning.

    I want to thank you for your blog as it helps to know I am not alone in this.
    Lora

    • Lora, this must be so difficult for you. Thank you for writing back and sharing. This is a difficult, sad journey … I wish there were some way to make it easier, but words can help only so far and no further…

  5. Ana says:

    I read your blog post. You are not alone. You are truly blessed for being her caregiver. I live thousands of miles away from my lovely mother and my heart is split between my family/work/Life and my mom. Mothers are very previous, they give us unconditional love, and they show us how to love; their love is so powerful that we can feel in our hearts.
    Your mother may not be expressing her love in this late stage of dementia, but it is there, it never goes away; the brain lost the ability to express feelings, but she feels and God sees it. Be assured that your mother loves you and feels your love more than ever. God bless you for being there for her and God bless your mom for now and forever.

  6. Lora Ellis says:

    Swapna, thank you for your blogs about your mother. I am so sorry to hear of your mother’s passing. Mom’s journey is about at the end as well. She chokes on her saliva and most foods (which are pureed to applesauce consistency). I have been with mom for the past 4 1/2 years and it has been a blessing for me to be here with her. Like your mom, mine has come back to better days but I think that will not happen at this point. I have finally accepted that and now I want to provide calmness and care for her so that she can be comfortable. I do have Hospice coming to our home to help me with her. They too are a blessing. It is so sad to see mom’s body as it is so frail and thin. I pray that she will go peacefully with me by her side. Again, thank you for your blogs as it has helped me, and I’m sure many others, take care of our loved ones. God bless you.
    Lora

  7. Diana says:

    Thank you for sharing and for your compassion that, sadly, we do not all possess.

  8. monica randolph says:

    Well, my mom is getting kicked out of rehab center because her 100 Medicare days are going to be up…I’m really bummed out because I will have to quit my part-time job to take care of her. I dont mind taking care of her but I know she is going to need to way more care than I can provide. Plus, she has a serious stage 4 bedsore on her buttocks. Life feels like hell right now:(

  9. tajamul ashraf says:

    my father has d same position…right from past 3 years.. my grand mother got a standing fracture inhis left leg and she got bedridden…and has dementia she doesn’t eat…😟😞🙁

  10. Barbara Collette Terrell Galloway says:

    I am going through this phase with my 87 year old mother. It is nice to know others have gone through the same experience

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