26th Apr2011

The trouble with food…

by Dutchcloggie

JD in her chair on the patioThis weekend my parents came over from Holland for Easter. On Saturday, we put JD in her chair again and rolled her outside onto the patio to enjoy some nice time outside. i had hung up some blankets to create shade and it was a lovely little space for her. The bbq was fun and JD did eat a bit of food.

Lately, eating and drinking have become more of a problem. It seems that JD is slowly losing the ability to voluntarily control her muscles. This means she has trouble swallowing but also trouble REMEMBERING to chew (or something like that). Food will remain in her mouth for a long time and she needs constant reminding to keep chewing and to swallow. Other times, she simply won’t open her mouth, no matter how much I try. Since she will only drink when she has food in her mouth, this also means she drinks nowhere near enough in a day.

Often, when people are dying, they lose their appetite. JD seems to be different. It seems that she does want to eat but that she is simply sleeping too much to be able to concentrate on the chewing and swallowing.

She is very sleepy and has been for the past 3 days. This may be a sign of progression of the disease. Or it may just be because we have exhausted her over the past 3 days, having her in the chair for too long every day.

I have spoken to the district nurse and we agreed to see how things are in a few days. It might just be a temporary blip.

UPDATE: Today, JD has eaten her way through an entire bag of Kitkat bites and a pint of orange juice… Yay! She is also much more awake today. So it is clear the two things are very much linked. Maybe it is something as simple as that when JD sleeps, her entire body goes in to a much deeper kind of sleep as before and unless she is fully awake, she is unable to eat or drink.

So maybe I need to work harder at keeping her awake….

2 Responses to “The trouble with food…”

  • >I had a wry grin at some of this. My father, who is 90 in June if he makes it, only likes to eat chocolate squares and Solo. He will often have something in his mouth for ages, and then say to me "Now what do I do". When I suggest he swallow it he says "Oh … yeah".Massive difference in their circumstances, but not in their situation. If you get what I mean …

  • >That made me smile too 🙂 Jane had most of dinner last night. I think she is now just too sleepy during the day to eat. Like her brain is shrouded in too much fog to understand what itis supposed to do. Only when she is awake enough in the evenings does she eat or drink.

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