A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with her.

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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Palliation

A support group meeting I hope to attend will be including an expert who will talk on palliative care. I am really looking forward to this meeting. Such meetings provide me a forum to share my experiences and insights with others, and also get input from them. There’s nothing as effective as interacting with fellow-travelers on this caregiving journey, where we get a compassionate and helpful environment to understand how we can handle our roles effectively.

The meeting is particularly welcome right now because of my changed caregiving situation.

Around three months ago, my mother slipped into a bed-ridden state. She nods and smiles occasionally, but does not talk, except for a word or two–around five words a day 😦  .  She cannot prop herself up on bed, or turn sides without assistance.  As I, along with the medical and nursing resources available to me, examine ways to improve her situation, I am also trying to adjust to this new reality. Stuff that was priority a few months ago seems trivial, or at least, not important in my immediate context, and I am redefining my life.

One casualty along the way has been my blogging. It is as if I had decided that I will blog only when I am free to do so, and when I am feeling good and relaxed enough to compose something. I suspect that’s not going to be likely for a while, and so I am wondering whether I should blog anyway, even if the posts are small, to share my current caregiving situation and the thoughts it brings to me. I haven’t decided yet, but perhaps there is a merit in sharing this part of my life as it happens…

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