Late Stage / Hospice

Sixth_Child

I'm looking for insights from anyone who has experience with hospice care, particularly for someone with Alzheimer's disease. My sweet 91-year-old father has recently experienced a significant decline. He has lost a considerable amount of weight because he has almost completely stopped eating (a couple of bites a day for weeks). While he has always been on the thin side, he is now extremely frail, unable to walk or perform any tasks independently, and he spends most of his time sleeping, approximately 18-20 hours.

Moreover, he's been struggling with speech. Throughout his life, my dad has been talkative and has always filled conversations with his sense of humor. However, recently, he's having a much harder time getting his thoughts out. Nevertheless, he can still recognize his wife and most of his eight(!) children when we are with him, and he maintains his dry wit. Despite his continuous confusion and repetitive questioning every 30 seconds, he manages to be funny and sweet, just as he's always been.

My dad has consistently expressed his desire to avoid hospitals and has maintained a more natural approach to his health. He took pride in looking after his body, exercising, and going for daily walks. Hospice care is the clear choice for us, as it allows us to keep him at home and honor his wishes. We recently had the hospice intake assessment, and I was present with my stepmother (who is 25 years younger than him). During the assessment, my dad jokingly asked the nurse if she planned to make him do long division or teach him how to dance. I could sense that she was surprised by his conversational ability and humor, and I was concerned that they might not accept him. However, due to his undeniable physical state, he was admitted to hospice care. So far, they have been exceptional, displaying compassion and providing the type of care we want for him during the remainder of his life.

I've read numerous forums and articles about late-stage Alzheimer's, but I haven't come across a situation quite like my dad's, where he can still engage in conversations, maintain his personality, but his physical condition seems to be nearing the end. I'm curious if anyone else has experienced something similar.

Thank you for taking the time to read this <3

harshedbuzz

@Sixth_Child

Hello and welcome.

I am sorry for your reason to be here but pleased you found this place.

This situation is somewhat unusual, but not unheard of. My dad's progression was unlike anything for which I was prepared based on reading books and participating here. In the last 3 months or so of dad's life, he presented mostly as a stage 6-- he was losing weight (just over 10% of his body weight) despite us plying him with high-calorie treats, sleeping more, was not reliably continent, mostly ambulatory, very frail and needed assistance with most ADLs. His entire body and facial structure seemed to morph around this time. Despite that he knew who most of his people were- mom, me, my nieces. He was hazy on my husband of 35 years ("the guy HB is shacking up with") and son (dad confused his Japanese-American urologist for my son who could be Ed Sheeran's twin) who joined the family later. Memory tends to be LIFO.

He was very verbal. Ridiculously so. I brought him some Chik-Fil-A strips, fries and a milkshake one afternoon and happened to arrive as an attractive SLP was do a swallowing evaluation on him. Between bites and sips, he flirted and joke outrageously with her while have a sidebar with me about a visit from my sister who'd been really busy with work and the kids. After the eval, we stepped into the hall so dad could nap and the SLP shared that his swallowing was a serious concern, so much so that she tweaked his diet and suggested bringing hospice on board. She also commented on how surprised she was by his conversational ability in terms of retelling an event (sister's visit- spoiler- she died in 1994), his humor and also how intact his vocabulary was in contrast to his swallowing issues. (Dad's word finding was quirky-- rather than describe something as some do, he substituted a more elevated term. Once when he was angry in rehab, he asked the PT "By whose authority am I incarcerated in this facility?" The DON scheduled a hospice evaluation for the next morning. Dad died later that evening from complications of aspiration pneumonia based on bloodwork and imaging done just before the SLP arrived.

I'm sorry you are going through all this. I feel fortunate that dad was able to communicate right up until his final hours. He and I never enjoyed an easy relationship, but he mellowed at the very end and we were able to enjoy our visits.

HB

Sixth_Child

@harshedbuzz Thank you so much for taking the time to share your experience with me. I'm very sorry to hear about the passing of your dad. I keep wondering, could we possibly be so lucky to have him communicating up until the very end? I've just hardly heard that which has made me preoccupied with when that will change and what is to come. But hearing your experience is very comforting and I can relate a lot to the way your dad interacted with others (especially the flirting haha - he proposed to the intake nurse the other day). Also, interesting what you said about vocabulary changes. I was there recently with my 2 year old daughter (I have 4 kids, 8 and under) and he kept asking how often I had custody of her. I'm happily married and I like to believe he remembers that so it actually seemed like he was trying to ask something else but couldn't find the appropriate word. I truly am grateful to hear your story because I keep thinking that he has to stop talking before he'll pass but clearly it doesn't always work that way. I'm trying to soak up every conversation with him during this time. The fact that he has nearly stopped eating feels like a clear sign his body is preparing for end times. Thanks again for your support!

terei

AD affects various parts of the brain. Clearly, the part that controls his verbal skills is still working, even though other parts have been attacked. My own mother seemed to understand much of what was said to her well into the disease but did not speak for about a year before she died.

BassetHoundAnn

Hello and welcome Sixth-Child. I'm so sorry that you're here. It sounds like you are doing all the best things for your dad. My mom is in late stage 7 of Alzheimer's and is also very chatty. She's 97. She's been on hospice for 1.5 years. The hospice aids and nurses are always surprised at how conversational she is during their visits, and always tell me how much they enjoy talking to her. She doesn't appear to understand much of what people say to her, but she can still hold forth on a variety of topics and at times her lucidity is surprising. Yesterday when I visited she didn't recognize me, and for the past 3 years has often thought I was her sister. Several times hospice has told me that she was in the process of actively dying, then she sprung back and resumed eating and talking.

A friend likens an ALZ-afflicted brain with an electrical panel in which connections flicker on and off in a random fashion with no apparent pattern. That appears to be what's happening with my mom, and your dad too. Be thankful for the conversations and cherish them. It's a long, hard journey.

Battlebuddy

Hello sixth child,

I am 5th child of 8! I wanted to weigh in. My husband passed away Aug 8. He also began loosing weight his last year. He became so skinny his bones were sticking out. He still had a great appetite but it seemed like his body didn’t know what to do with the food, and it would pass through him .

I wouldn’t say he was highly verbal , but he retained his ability to speak all the way to the end. Ok and yeah were his usually words but from time to time would say a phrase. I took a video of him talking to “ someone” a month before he died. He smiled and said yeah. Then he said “ it’s right there” and “ I told you” I believe he had a visit from a departed loved one.

The last week of his life he didn’t say much, but he recognized me and my children throughout the 7 year Alz journey. It was a blessing because we still shared that connection. Everyone is different though but that’s our story

jfkoc

Please talk with your father's doctor

ButterflyWings

Sixth_child it sounds like you are doing what your dad would have wanted as far as compassionate care under the circumstances. We are on the same path. Approaching the 2nd anniversary on hospice, though it is due to the roller coaster of wild ups and downs in DH's status every 60 day requalifying period.

I learned about the 7As of dementia here, which includes "aphasia" or when it begins impacting their words. Speaking, comprehending, etc. DH is there now after many years even in late stages, of talk talk talk. But no longer. I so wish I could hear his voice more, even if the conversation made no sense. But those days are long gone now, kind of trickled off in 6D or E without me really noticing as so much else was going on. I wanted to suggest you record your dad while he is still so verbal. You will not regret it.