Loss of appetite in late dementia and middle arm circumference shrinkage - what to expect in the next few months?
Mother has lost most of her interest in eating and waves off or hits the aides who try to feed her. She's wheelchair bound and down to yes and no (on good days). Her upper arm circumference was 26 when she started hospice in August after losing a good bit over the summer, and it's now (Dec, 4 mos later) down to 22.5. I understand that's a marker for "risk of malnutrition" and that a 10% loss in girth equals about a 10% loss in BMI - so that's 13.5% loss and a current weight of about 88 lbs. She's losing about .5 cm per week, and eats one meal or snack a day. She's been on hospice for those 4 months and they have been so helpful. Our nurse is careful not to predict any future events.
Does anyone have experience with the end of life decline measured this way? What was the time line like for you?
"Just out of curiosity, was your LO a former smoker?"
I think that is for Sunnygal. I'm the OP and my mother never smoked, but lived in a high irritant home for 40 years. She was a wet hoarder and usually smelled of urine ammonia from her dogs. Her full body scan for cancer only showed colon cancer with no lung involvement 7 years ago. Her colon cancer blood markers have remained low. It's not cancer, it's Alzheimer's.
It seems there are so many facets to stages at the end of life, as if there are many paths but no one has a complete map of them all. You and others are explorers, in a strange land. There's apparently still a lot that needs to be learned about dementia and stages during end of life.
Seven and one-half years! That's unreal.
I have read that Alzheimers patients live longer than those with other types of conditions like Vascular Dementia. The average life expectancy for them is 5 years.
I am now quite familiar with the assistant director of the MC. The original director passed away. She was awesome and had a mother who died from dementia, so she understood so much. It seems much longer.
It seems so long ago that my LO and I had fun chatting, laughing and being cousins. This is a very cruel thing that has taken her.
I have read about that. How long was your mother having drooling or swallowing difficulty, before she got sick with pneumonia? And, how did you know she had pneumonia? Was she still verbal?
I knew something was wrong when she began to cough up great foamy gobs of saliva but the RN insisted that her lungs were clear and that she couldn't have pneumonia because there was no fever, although I do know from my reading that aspiration pneumonia often does not present with fever in the very elderly. They gave her ventolin treatments and would suction if I complained, but only if I complained - this went on for at least a couple of months, perhaps 3. I was only told that she had pneumonia a few days before she died when they put her on an antibiotic and ordered oxygen, how they made that determination is a mystery to me. And although I was fairly certain it was aspiration pneumonia nobody ever mentioned the aspiration part, I got that from the death certificate.
Does your mother have Alzheimers, Vascular dementia, Parkinsons, etc?
It sounds like your mother may be declining in health, faster than my LO (She's actually my cousin, but, considerably older than me.) A couple of years ago, we were in the the ER several times, some for UTI's, and the ER doctors told me that she was very ill and encouraged me to contact hospice. They seemed grim and I thought she wouldn't make it much longer. But, they give her antibiotics and she rebounds back each time. They led me to believe that she had little time left. But, she was still eating well. Eventually, I did get her on hospice, but, she still eats well and has good vitals. I have no idea how. She looks like she has no life left in her. She is several months old mentally. She sucks her thumb and would probably drink from a bottle if offered.
My LO also has leg contracture, but, she is able to move them and has never had any skin breakdown. She used to repeatedly pat surfaces with her right hand, such as table, bed, lap, wall, etc. She did this all the time. That stopped about a month ago. I don't think she knows anything that is going on around her.
The medical group that was providing monthly medical visits to mthr really did a horrible job and let a leg contracture get pretty bad, never noting it on her chart. It was only when I noticed it that I called in hospice and they thought mthr would have qualified a long time previous, like your mom.
I'm wondering if just a virus would take mthr out now. She's skin and bones and asleep almost all the time. I just don't know what to expect. She was 140 lbs last Christmas.
I did research on cachexia, which seems to fit our situation, but, hospice has not told me that's what she has. She still eats and drinks, though, she has drooling now. Is your mother able to chew and swallow okay?