Relatively strong appetite in late stage 7?

aquamarine74

My mom is in MC and on hospice in what I would say is late stage 7: in a wheelchair, no communication, no facial expression, rigid limbs, super skinny (her hands look skeletal—there is no other word), little or no vision in her left eye, semi-sleeping most of the time, etc. She is in her early 70s, diagnosed with EOAD more than 14 years ago, in MC for almost two years.

Despite her current state she can be roused from being half asleep, brought to the table, and eat solid foods (with help) three times a day. She eats less than she used to but still eats a good half of what she is served plus dessert and a drink.

My question, such as it is (I know I am really searching for a definitive timeline for the rest of her journey) is that a good appetite and ability to eat solid food semi-independently doesn’t seem to me to square with the rest of her symptoms. I keep thinking she is pretty close to the end but then I see her eat a meal and think maybe we still have a long road ahead. Any thoughts to share?

Thank you.

fmb

Your description of your mom sounds a lot like my DH. He still has a good appetite and can sometimes feed himself his puree or is hand fed, though he is showing less interest in drinking liquids. He is still able to occasionally smile. He has been exhibiting some of the characteristics indicative of the final weeks before death since mid-February, with greater decline in the past six weeks. I realize no one can say how much time he has left, and sometimes people will be seemingly on the brink of death only to rally again and again. Right now I just don't have a clue.

ButterflyWings

No clue here in early Stage 7, either. Condition sounds similar to both your LOs. I wonder if it has anything to do with leptin resistance, which at least 40% of PWDs have? That condition affects their appetite, so there is the feeling of needing to eat even if not actually hungry.

Nurse lead with our first hospice agency researched what I was describing a while back, to figure out why DH was eating until his stomach hurt, and would still keep going until I took the food away. At that point he was taking a lot more in, and gaining unneeded weight. In fact, he got booted off hospice for it since weight loss is a criterion for them even though he was progressing/declining in many other ways.

At this point the behavior looks much different but when I think about it, it is the same thing: just now it is a thin-as-a-rail LO who can't form a complete sentence most of the time, barely moves from his reclining position all day, needs assistance to sit up from lying flat to sleep, and to stand from sitting. And he can't tell food from a stick or a rock. But if you put it in his mouth (anything) he will eat it.

BassetHoundAnn

My mom enjoyed a hearty appetite, and was also able to feed herself, throughout stage 7. In fact she was eating and drinking pretty well until about two weeks before she died. She was in late stage 7.

Elshack

On Nov 23rd ( Thanksgiving 20023 ) my DH ate his pureed dinner in the MC where he had been for 14 mo. he used his walker to return to his room. We played some matching animal cards game in his room and I kissed him goodbye and he returned the kiss. At this point he said very few words. This was at 6:30 pm. At 4:45 a.m. the next day they called to tell me he had passed away. You never really know when the end is near. It seems every case is different. He had been on Hospice for several months due to his difficulty swallowing so that's why he was on a pureed diet.

From my own experience, the hospice workers and the MC staff were shocked that he passed away. He was definitely in stage 7. He was 93 1/2 and was diagnosed 7 yrs earlier. My advice is to just take it a day at a time.

DTSbuddy

My DH told me, years ago that he did not want to be spoon fed. He said that if he was not able to enjoy a reasonable quality of life, that he wanted us to let him pass away.

scarfire

My Mom has been in stage 6 for the past 8 years. it's been hard on us (her children) as she is still at home. She was diagnosed 10 years ago with Alzheimer's. Her care needs are enormous. I'm also wondering how much longer she'll live although I know the answer: Unknown. That makes the whole situation much more difficult.