Keeping her happy: Challenges of late-stage dementia care

My mother has slipped down some more on the incline of deterioration in her late-stage dementia, a slipping so gradual it is difficult to register it as it happens. But it was just two months ago that she enjoyed the story I was telling her every day and then the frequency tapered slowly, and now it has been several days since she indicated she’d like to hear the story. She sleeps most of the time, often not opening her eyes even when we feed her.

Around two months ago, when asked a question, my mother sometimes nodded or shook her head, or turning her face away. Once in a while (if the question was very simple, like, “Are you feeling cold?”) she’d even say a word or phrase (Haan) in response while nodding. She would nod vigorously if I asked her whether she wanted me to talk or to tell her a story, but sometimes she’d shake her head to indicate she wanted to rest instead.

We deciphered (hopefully correctly) her choices and her moods by asking simple questions and watching her body language.

When not sleepy, she enjoyed company and people talking to her , though it was often clear she did not fully understand the content of what was being said. For example, I don’t think she understood the details of the story (and it was always the same story), but she understood that someone was telling her a story, and showed her liking for that companionship and affection.

Now, it is increasingly difficult to understand her desires because most of the times, she does not respond (through words or even body language) when asked a question.

After her last round of blood tests and checkup, the doctor told us she is doing well as far as the physical parameters are concerned, and that the minor imbalances (the sort she has often had before) were within acceptable range and not sufficient to explain the change we were seeing. He agreed that she is declining in terms of her responding. “What can we do?” I asked. He explained that such gradual deterioration was natural given her dementia, and there was nothing to be treated as such. “Keep her happy,” he said.

I don’t think we human kind are very good at being happy. Or keeping others happy.

Decision making for dementia patients

As I mentioned earlier, one of the most frightening parts of caregiving for me is taking decisions on behalf of the patient.

In most aging, the elder takes his or her own decisions, but in the case of dementia patients, decision-making is the caregiver’s responsibility. Is the patient in pain or not, and should I call the doctor? What, exactly, is paining, and how much? Did the patient’s pain reduce with the medication? If the doctor offers a choice, should antibiotics be given or not, if the patient may not benefit from them? How aggressive and invasive should treatment be? Should the patient be hospitalized?

My current phase of caregiving may require tough decisions that my mother can no longer participate in, as she just does not understand anything. There is so much confusing information around, so much “there is no right answer” type of advice, so many pros and cons to weigh.

Let me illustrate with an example.

Moving forward as a caregiver, accepting new realities

I use this blog as a means of introspection, mainly with respect to my caregiving role and its impact on my choices and attitude. As January draws to its end, so does my month-long one-blog-a-day exercise it is time for me to consolidate my thoughts and get ready for the year stretched in front of me.

A number of my blogs so far have described the current status, and examined the past to see what  I did, and what in hindsight), I would do differently if life pressed rewind. And it now makes sense to see what lies ahead to incorporate all I discovered about myself into my future.

One lesson I have learned is that there are no easy answers for what is right or wrong, but being better informed about the various option, and their pros and cons, will allow me to make choices I remain comfortable with, even in hindsight. So yes, I will read up more on topics that are relevant now.

Bioethics and dementia

Just saw this site, Nuffield Council on Bioethics, and read their work on dementia.

I have only one word. Wow!

Sometimes, someone catches every thought you have or could have had.

Every section, every point, every sentence resonated. I wish  could make this compulsory reading for…oh, well, everyone, because dementia and caregiving is something that affects everyone. Anyone can get dementia, anyone can be thrust in the role of a caregiver. And even if not, there are people around you who are patients or caregivers, and they deserve a life, too. What I loved about these reports is that they address a wide range of impacts. They don’t just talk about the patients’ right, they acknowledge the carer, and they acknowledge the role of society in it all, even that of shops and restaurants a patient may visit (or should be able to).

Dignity. Ethics. The right to life fully, despite the condition. The dilemmas and difficulties. The carer’s own life, and the balancing act. How every case is different. How difficult it is. How it hurts. What can help. It’s all there.

I thought I would place a summary here, but I can’t do justice with a summary, so go ahead to the page and have a look yourself….

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caregiving is frightening at times

One of the most frightening things I find about caregiving is the decision making it involves.

For example, my mother is coughing after trying to swallow a pill. I thump her back, I try to make sure the pill’s gone down the right way. She continues coughing. She complains of chest pain. She says she cannot breathe. Her voice sounds normal to me, no rasp to it, no sense of gurgling. Her breathing is even, too. But she is coughing, and she is frightened. What do I do now? Do I rush her to a hospital? Do I tell her there’s nothing wrong? Other than her fright and her cough, there is nothing odd to make me suspect choking. So I have to decide.  Taking her if it is not needed will tire her and traumatize her; not taking her if needed is even more dangerous. In this instance, I try distraction by talking of something quite different for a while, and suggesting she rests. A few minutes of distraction, and she’s forgotten her coughing. If it were real ‘partial choking’, distraction would not have worked.