End Stage
Hi. Mom is 86 had Alzheimer’s for 8 or 9 years maybe more. She is definitely in late/end stage. She sleeps 90% of the time. Been non verbal for over a year at least. Getting frail. Is this possibly a sign that this is close to end? My sister lives the closest so I don’t get to see her a lot. And don’t get much feedback. Any insight or personal experience is appreciated. TIA
Comments
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welcome. So sorry for the reason you are here. There really is no way to predict how dementia will progress. I would ask for an evaluation by hospice. She can be accepted by hospice and if she improves they will discharge her. They will be able to better answer your questions. Hospice provides many services for patients and family. You can also do a search for the 7 Stages of Dementia chart that lists behaviors and discuss it with your sister to see what stage your Mom is in. Being non verbal and frail is usually Stage 7 but without more info it’s difficult to know for sure. Praying for you and your family. 💜🙏
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Thank you. Much appreciated. From researching the disease, it would seem yes she’s definitely in stage 7. It’s just so sad. Her skin is all flaky. Kind of flushed looking. Seems she has a bandage on something all the time. Glazed look when she is awake. Her skin color looks weird to me but maybe it’s. just the lighting from the pictures Im sent. thank you for replying and the prayers. Very much appreciated.
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@hiker88
I am sorry you are in this place. It does sound very like late stage 6/stage 7.
One other sign that PWD are nearing the end of life is significant weight loss.
HB0 -
At the end of this is an actively dying assessment tool that may be helpful. So sorry.
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Thanks for responding. I looked at the handout and I checked off everything that applies to her. I attached the ones that are relevant to mom. Her feet are starting to curl up now. Not sure if we see a smile or more of a muscle twitch. Hard to wake up regardless time of day. My gut tells me it’s within weeks/months now. She’s on puréed food and sometimes she looks bloated but her weight has dropped but nothing crazy. Any insight on what we can maybe expect with help. TIA.
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I would call hospice. They are wonderful and will answer all your questions. They will keep her comfortable.
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I assume she is in hospice?
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So sorry. These are hard times for sure.
It’s hard to tell from the post whether she has the support of hospice. If not, you may be interested in these FAQs about hospice care:
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I have suggested but I live out of state and my sibling feels she isn’t ready for hospice. I was just hoping for some feedback as I’m fairly certain it’s within a few months now? My sibling feels since mom is still eating she isn’t ready for hospice.
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Sorry if this comes across as too blunt, but here goes: calling hospice is not the same as calling the undertaker. Your sibling is wrong. Hospice care is for care in the end-of-life stages. It’s sad but true that many people do not get the benefits that hospice support can bring because their relatives wait too long to set it up.
It’s not possible for people on an online forum to assess your mother’s specific condition and predict her longevity. But certainly what you say sounds like the later stages—and like a situation that desperately needs hospice support.
Sorry you’re going through this!
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No I do agree. I feel that she should be evaluated to see what her needs are. She’s on puréed food. Bowel problems, skin problems. Depending on the nurse in the care home she’s in, she may or may not be propped up okay. If she’s not propped up, she falls over. She’s hasn’t been able to walk or anything for the past 18 months. There are times I see pictures and she looks so bloated. But then I’m told her weight is holding something with a slight increase. Sometimes slight decrease. And my sibling says things like oh she was asleep the whole time of the visit. Or today was a good day and she seemed alert. Im thinking alert means eyes open. The last time I was out there, she had a bandage on her arm, her skin was flaky. There was no activity behind the eyes. Yes she was awake but her feet were starting to curl up. And maybe every 7 or 10 days she has to stay in her room because of bowel problems. I have no say whatsoever and can only voice my opinion. I even speak to my own doctor and they say as well that hospice would give her so much more care and one on one rather than just one of many to look after. Sorry for the rant. It’s so hard to see this once amazing woman brought down by this.
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Oh, wow, you are in a tough spot. I am so sorry for you and for your mom.
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Thank you for kindness. Not sure if it’s weeks away or months but I don’t think it’s going to be long. Horrible to say but I sure it’s not. Such a horrible disease.
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@hiker88
I am so sorry. It is hard to care so much but not have a say in care decisions.
I'm kind of surprised the facility hasn't discussed bringing in hospice with your sister. Most MCFs and many SNFs will request the family bring in additional help in the form of private-pay aides or hospice as care needs increase. They can bring in bath aides, pastoral care, things like music therapy, supplies and support for family which is a benefit all around. Not only is your mom missing out, your sister is as well.
Perhaps your sister doesn't understand hospice as a concept. A lot of people don't. When my mom (no dementia) and I did her advanced directive, she initially refused hospice because "they don't feed you on hospice". What? I reminder her that my MIL was on hospice for 5 1/2 years and would not have survived that long without food.
HB
PS And no, recognizing the reality of life expectancy is not horrible. Wishing a LO free or the disease isn't horrible either.1
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
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FTD = Frontotemporal Dementia
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MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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