I can pinpoint the worst experience I’ve had as a caregiver. In fact I already alluded to this experience in a post about sadness headaches. The experience involved an assisted daily living (ADL) need.
Cindy needs assistance using the toilet in three ways: 1) being reminded to go; 2) guidance through the process and 3) wiping. Through frequent reminders during the day I have avoided incontinence issues; I’m optimistic at this point that incontinence always will be avoided. Assistance with wiping is a must to avoid infections; I use wipes in the process. That leaves guiding Cindy onto the toilet. The one time I failed miserably at this led to my saddest moment to date.
It was in the evening and Cindy was in a fog by the end of that day. I led her to the bathroom OK, but could not get her to sit on the toilet. I tried coaching; I tried gentle guidance with my hands. Cindy knew what was expected, but her mind could not get her body to respond. Sometimes my coaching is part of the problem, making her feel pressured. I left the bathroom to allow her mind to respond in its own good time.
Except it never did. Cindy tried to leave the bathroom once but, being towards the end of the day, I knew she really had to go … and really needed to. I brought her back and tried leaving her alone again. She was about to leave again when I decided that for the sake of good hygiene I needed to force things.
From all our long distance hiking Cindy is light enough, and I am strong enough, to pick her up like a child. I cradled her as lovingly as I could in my arms, then set her down on the toilet as gently as I could. Even so, she let out a frightened yelp as I did so. I understood totally what was going on. Her mind already having lost control of her situation, here she was now totally in my control. My heart felt like it was being ripped out with that helpless yelp, but I figured that was what I needed to do for her health at the time. Like I wrote earlier, that led to the worst headache throughout the night that I’ve had so far.
You may wonder why I share such a painful experience, or why I include assisted daily living as a brain dysfunction symptom. I receive feedback that this blog has been helpful to some. Part of what keeps this blog engaging, and ultimately helpful, is sharing the total experience of dementia, not just the helpful tips or the joy (most of the time) of being with Cindy. We, meaning me and Cindy when she was aware enough, desperately want this blog to help people.
Thus I include assisted daily living as one of the symptoms, even though by this point we are talking about “symptoms” that occur too late for reversing brain dysfunction. Be aware that advanced Alzheimer’s requires assistance with virtually all daily living tasks such as feeding, dressing, cleaning and voiding. Forewarned is hopefully better prepared to handle such tasks.
Even in this there is a ray of sunlight shining upon us. I’m as far along with ADLs as you can go, farther than with my Mom when she began her stay at the nursing home. I continue to learn and adjust along the way, avoiding repeats of incidents like the one I described here. Yet Cindy is in most ways healthy and happy. Her quality of life is mostly high; that is what remains important.
Hey Kirk, in retrospect, do you feel there was anything you could have done differently? As a student of occupational therapy who is now in a class working with people who have stroke and dementia, I would say you did a great job. You know Cindy better than anyone. I have worked with someone with similar needs to Cindy’s, and I know how frustrating it can become when you need to have them perform toileting (for their own good) and they just can’t understand. Bless you.
Greetings Lisa,
Sorry for the delay, we’ve been in Maryland this past week. The best strategy is to avoid the conjunction of “brain fog” with toileting. For me, humor has been the best way to cut through “brain fog.” We have not had a similar incident since then. Yet with this disease no one really knows what will continue to work as time goes on.
Have you seen this?
http://articles.mercola.com/sites/articles/archive/2015/06/04/alzheimers-disease-cafos.aspx
Greetings Chuck,
Sorry for the delay, we’ve been in Maryland the past week. I looked over the study and have seen similar. I agree with the conclusions for diet, though I think the relationships presented here are likely spurious, and the numbers presented bear that out from my point of view. Besides whatever else a poor diet may be doing, it is likely causing inflammation and oxidative stress. That would be true for eating feedlot beef. After all the research I’ve been perusing I’m firmly in the camp that what goes on inside the cell, such as oxidative stress, is the real cause of Alzheimer’s and dementia. The problems outside the cell, such as with prions, may be induced by the stress inside the cell, or may be happening independently. In either case, something as ubiquitously bad as inflammation may be the real culprit and other factors amount to just piling on.