End stage AD

aeliasz

There are so many websites out there that list AD stages and symptoms but I want to ask people who are actually living through it what stage they think my mom could be in. She cannot form sentences that make sense, cannot understand much of what is said to her, doesn’t know anyone in the family, has almost no childhood memories, she can barely walk and has to use a walker ( but I have to remind her to use it), can’t read or write, has frequent incontinence, can’t dress or bathe herself, basically is unable to do anything except feed herself. She does have that ability to remember song lyrics though which is amazing.

Based on your experiences, what stage would you guess she is in?

Quilting brings calm

At least stage 6d.

harshedbuzz

The rule of thumb is generally that a PWD is considered to be in the latest stage for which they have symptoms. It's not unusual for PWD to have a foot in 2 or even 3 stages.

That said, I agree with @Quilting brings calm -- around 6d.

Functional Assessment Staging Tool for Dementia | Resources (compassus.com)

Marta

You said it yourself in the title: she is end stage (severe). You already knew that.

The numbers and divisions of the stages are just a shorthand way of communicating for caregivers. Medical professionals generally don’t use those letters and numbers: they generally use mild, moderate, and severe.

Do you have more in-depth concerns that prompt you to ask this question?

aeliasz

Yes, my main concern is not knowing what to plan for. If this is going to go on for many years I need to start thinking about a nursing home.

terei

From what you are describing, your LO should be under Hospice care. If she is not, I would suggest you call them in ASAP>. It is unlikely your LO will last ‘many’ years in this stage. Hospice may be able to give you an estimate at the time she is evaluated by Hospice personnel

Vitruvius

Interestingly, the ability to retain song lyrics almost to the end is typically for dementia patients. Apparently song lyrics are stored in a different area of the brain than regular language skills, one that tends to be less affected by the ravages of dementia.

BassetHoundAnn

My mom is at a similar stage as your mom--and has been for the past two years. Because of incontinence and frequent inability to sit up by herself or walk, I estimate that my mom has been bouncing between Stages 6e and 7d. Some days she's really good, highly conversational, has memories to share. Others day not good at all. She's been under hospice care for the past year.

It's been an emotional rollercoaster. Several times in the past six months hospice nurses have said that she was on her last days, then she came roaring back.

Is your mom in a memory care facility? If so what do the aids/nurses think?

I'm concerned my mom may need to be moved to a skilled nursing facility in the near future, and have made plans for that possibility.

I've heard that when Alzheimer's patients lose the ability to smile, when their face becomes a mask-like blank, that's when things are dire. That's certainly not the case with my mom. She still smiles a lot in spite of all the indignities of this horrible disease.

aeliasz

Yes my mom is in hospice care here in my home. But they can’t accurately predict how long this could go on. Like BassetHoundAnn says, they’ll seem to be declining sometimes and hospice will predict they’re nearing the end but then they’ll come “ roaring back” …..And her moms been in hospice care for an entire year. I hate to say this, but when people say things like “ she’s been blessed with a long life”, I totally disagree. Continuing to live on and on in misery with this debilitating disease is NOT a blessing! I appreciate everyone’s replies. Its helpful hearing what others are going through.

MN Chickadee

Yes sounds like late stage 6, not quite 7. It's hard to say how long. Some people do linger like that for a few years. Other times something takes them quickly. A common cold or flu, a UTI, covid, and many other things can suddenly send their bodies into shutting down and all of a sudden they are in the dying phase. If she is still feeding herself she probably isn't too close unless something else gets her but again, very hard to guess. Each person is different. I guess if it were me I would assume it could go on a while and plan accordingly just in case. I understand where you are coming from; there were many times I wished something would take my mother. She would not have wanted to live that way. Yet we still had good moments and connection, music still touched her like your mother, and there was always mixed emotions. When her time came I was so not ready to let her go despite all these feelings before. It's all hard.

Ed1937

My guess would be late stage 6, maybe into stage 7. But if she's feeding herself, maybe not. I'm sorry.

aeliasz

Do all AZ patients lose the ability to feed themselves in the end stages???

MN Chickadee

https://alzconnected.org/discussion/comment/170697#Comment_170697

I would say yes. Both the muscle memory of bringing the food to the mouth and the ability to swallow get "forgotten." In the early to middle of stage 6 they may still feed themselves some and may only require some prompting, but eventually this skill goes. My mother fed herself through almost all of stage 6 and was just starting to struggle with eating when covid sent her into a tailspin and she did not recover. We only had a few weeks of Ensure and spoon feeding. If they live long enough they need pureed food so they don't aspirate from not swallowing right and are spoon fed by someone else. They tend to not eat as much at that phase and the process of starting to shut down starts, but still people can go on that way for a year or more. It's a slow and painful process to watch. I saw many at her facility be fed this way for months. Many became unresponsive much of the day so it was difficult to get food into them, though it takes very few calories to sustain when they aren't moving at all. Usually one can tell the end is nearing as they eat less and less.

vivienna

My mother is in end stage. She has had Vascular dementia for 12 years and is 84 now.

Could someone help me figure out what the final stage looks like. She can no longer talk. She can only walk with assistance. She can not feed herself but will eat when she is fed. She has lost tons of weight and looks like a skeleton. She sleeps a lot. She does still smile and like music. She recently had a seizure that put her in the hospital for a week but she recovered. It was the first seizure she ever had. She also has contractures in both arms and can barely move them.

She is being cared for at home.

terei

Your mother is at the end of her life in the final stages of VD. I sincerely hope that you have Hospice on board with her to help her + help you navigate what you have to go through. Hospice should be able to give you a possible time line for what you can expect.

terei