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.

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Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
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When my mother  was younger, she was fierce about her independence. She always said she would never become dependent on anyone, that she would rather die.

Then, as she became older and her physical and mental abilities reduced, her definition of what was ‘dependent’ kept shifting, always remaining slightly beyond where she currently was.

In my mother’s case, her dementia compromised her ability to understand the progressive nature of her problem and the inevitable growth in her dependence; it is hurtful to see that a person who valued independence so much can do nothing about her state, and understand nothing.

But thinking of her earlier determination not to become dependent, I cannot help wondering why the idea of dependence is so unacceptable to most people.

I think it is easier to say you will never become dependent or inconvenience people in the phase of life when you are independent. When I think of it, I cannot remember even a single person who, while dependent, remembers and acts upon this need to ‘not depend’.

I also think this concept of ‘never being dependent’ is often more about ego and sounding correct. It is wrong to inconvenience others; so, saying you “would rather die” sounds correct and possibly a bit heroic.

Why do people say they do not want to become dependent? Is it out of consideration for the potential caregiver, or is it ego, or both? I think it is very difficult to accept help gracefully, and it may be easier to refuse help (or ignore the help you are getting) than to accept it in a way that is fulfilling to both the giver and the receiver. I often think of the book, Tuesdays with Morrie, as an example of how people can ask for help and receive it with dignity.

Here’s a thought: most of us, if we don’t die in accidents or of a heart-attack, will end up in a dependent state for at least some time. It makes sense to be emotionally ready to accept this gracefully when it does happen–though we may try our best not to reach that state.

Consider an old man, determined to remain independent, frustrated and angry at an illness that makes him bed-bound, always talking of how he hates this dependence, and trying to sabotage his recovery process by getting up to do things (against medical advice), because dependence is abhorrent to him. People around him are equally irritated, and everyone is always frowning. There are no thank-yous, no smiles, only one man proving he does not want to ‘inconvenience’ people, and others arguing with him to accept that he cannot do anything himself.

Contrast this to someone who accepts that her current state makes her dependent, is ready with smiles and kind words to her caregivers, and asks for help in a simple, direct way. People around her may be tired, but they feel valued for what they do, and often find themselves smiling back at the patient.

Which patient would you rather caregive for? And which patient would you rather be?

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