Pins and Needles, Part Deux

Sometimes, an answer isn't an answer. It feels more like a question. My husband was weighed, and he appears to have lost a pound or two. On the face of it, according to what I've been told in the past, that's not-so-good news; however, the hospice nurse advised me to not be overly concerned. After all, she explained, the weigh-in method at the facility is something less than scientific, apparently.

In order to really track weight accurately, it should be checked at the same time of day, wearing the same clothing, having eaten the same amount of food and consumed the same amount of liquid, and having toileted. And sitting very still on the chair scale with your feet firmly on the footrests. There's really no way to do all of that consistently at a memory care facility.

He weighs about the same as he did at the January weigh-in, assuming that was accurate. Perhaps February's number showing a slight gain was off. Perhaps it wasn't. Maybe he has lost some, maybe not. So now we wait for next month's figure.

And then it'll be pins and needles, part three.

Pins and Needles

March 6, 2019

I've been on pins and needles for about a week, since the last visit with the hospice nurse. As I'm sure I've mentioned in previous posts, my husband has been receiving double meal portions for several months in an attempt to stabilize his weight. How he is even able to ingest that much food without being ill is a mystery. But the big question is:  Is he digesting it? The hospice nurse thinks perhaps not.

He did gain a few pounds back, but the facility nurse doesn't think that's continuing, either. If so, that would mean we have moved to yet another phase of this horrible disease. If a person can't keep weight on in spite of all the calories, that means the body isn't able to process the food completely. In one end, out the other. And that latter part now seems to be requiring medication to keep it going.

So. "Weighing in" takes place the first week of every month. This week. That will tell us where we are right now. And that's why I'm on pins and needles.

Stay tuned.

Losing Weight

My husband has always loved to eat and was happy to consume anything that was placed in front of him. I was happy about that and flattered myself that he liked my cooking, which I worked diligently to improve as time went on. But the truth is that he liked everybody's cooking. And that's a good thing, since institutional cooking isn't always what you'd call "gourmet."

But he can't feed himself now and is dependent on others for his nourishment. Would you like him to have a sandwich (and here I mean nut butter and jam, not turkey and bacon and lettuce and tomato, all of which would fall out and make a mess) or drink a glass of water at snack time? He might be looking at what you're offering, but sometimes it's as though he doesn't see it. He may or may not reach for it. You will have to place the item in his hand and wrap his fingers around it, encouraging him to raise it to his lips, open his mouth, and take a bite or a drink. Step by step. Happily, he can still chew and swallow.

At mealtimes, he may or may not approach the table when encouraged to do so. He may or may not shuffle right past you as you offer a chair. He may sit down, or he may walk away. Is he refusing to sit, or is he unable to understand? Does he forget what he's doing as he's doing it? It's hard to say. It's impossible to know whether he's confused about the whole thing or whether he knows what to do but can't, or won't. He's unable to verbalize his needs.

He can no longer navigate silverware and must be fed, one mouthful at a time. The caregivers tell me that they often simply follow him around with his food plate, offering a bite now and then until he's eaten everything. I know this is true, because I have seen them do it. And I have done it, too.

Even though his appetite is good and he is eating well at mealtimes and at snack times, he appears to be losing weight and muscle. His clothing is now too large and hangs on him loosely. Perhaps this is because he generally paces intermittently when he's awake, burning calories.

Or perhaps it's just the normal progression of Stage 7. Your body eventually stops being able to absorb nutrients the way it should, even though you are eating plenty of food. Here's a pamplet I found about that, if you'd like more information. And here are some photos, so you can see the progression for yourself.

October, 2017
One Year Ago
Looking perfectly healthy. Looks can be deceiving.

End of March, 2018
Just before initial placement, just over 6 months ago.
Still looking healthy, but a sea change in the dementia from
same time the year before.

End of June, 2018
Just over 3 Months Ago
Recovering from sepsis and adjusting to new surroundings.
At his 4th place in 3 months.

October 10, 2018 - Yesterday. Heartbreaking.

Middle of July, 2018

Middle of September, 2018

October 10, 2018 - Yesterday
His leg on the left, mine on the right.