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KAM1973 Asked October 2023

We thought hospice was taking her to clean her up, but she hasn't woken up in 3 days.

My father is 89 and competent. He takes care of my ailing 83 year old mother with severe Alzheimers/Dementia. She is double incontinent, almost blind, refuses to change clothes, refuses to bathe, pees and poops on herself, on the furniture, floor, she paces all day long, won't even lay down to sleep. Only sleeps sitting up. She bangs on the walls, windows and doors screaming help help help, let me out, and Daddy Daddy Daddy. My sister who lives 10 minutes away (I live one hour away), thinks all this behavior is "fine". She just has on "nasty clothes" and plenty of people are nasty and dirty. My parents or family can't afford long term care, and other resources ran out. I finally had enough, and called her doctor who said call Hospice to come in and help. Mom was approved with ok from dad and sister. Workers came out for 3 days to try and help mom, to no avail. She is combative, hit them, screamed at them. Then the social worker came out and suggested she be taken to Hospice to be cleaned up and sent back home. Mom refuses to get in our cars to even go to the doctor, so even getting in the ambulance was an ordeal. Hospice did say the gave her some meds to calm her down, that was 3 days ago. Now they are saying she is end of life. And we don't understand what happened.

AlvaDeer Oct 2023
Your mom may have had an infection that has led to sepsis, and as an RN, with this level of incontinence, it is my GUESS that she got a UTI that went septic. But that would be a guess given the level of contamination from this massive double incontinence you mention.

We all die. Your parents are of an advanced age, and your mother is very ill indeed. For me, when my aged parents passed, it was in a sense a relief that they never again had to be in torment and afraid, and I never again had to witness pain and agony for these two I so loved, who had had wonderful long lives.

My heart out to you in this loss. I am so sorry.
Hospice is end of life care, and your mother will be kept free of torment now while she passes.

MAYDAY Oct 2023
Dear Kam, I am sorry your family is going through this.

i do not have a way to sugarcoat your situation regarding your mom. It is very difficult whst you are going through, probably more so for your loving and caring dad.

please please look after and take care of dad. You let him know she is ok and that she is not in pain. Please.

mom was not herself from what you described. She was not sleeping, incontinent, combative ( most likely from being frustrated & not sleeping). She may have had a UTI or something.
hospice took mom, and now she is sleeping. They probably gave her morphine and Ativan. Have a talk with her hospice team. Spend these hours or days with mom. Play her favorite music, and tell her it’s ok. You tell her it’s ok. Tell her you live her. Thank her for being the wonderful mom, wife, role model, and tell her your favorite funny story that all of you shared, those moments growing up, make it lighthearted, loving, and caring.
Don’t be too upset eith hospice.. easier said than done. You let DAD KNOW that mom is ok. If it’s her time, do not feel guilty. She is not in pain…
please look after your dad…

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funkygrandma59 Oct 2023
First I have to say that I've never heard of any hospice agency taking someone to their facility just to "clean them up." To try and get pain under control, respite or end of life yes, but not to clean them up.
Perhaps there was more to what hospice said to you and you just heard the clean her up part.
But regardless, she is now under their care, clean, comfortable and pain free. And isn't that much better than the way she was before she entered their facility?
I know that you wouldn't want your mom to continue living as she was, as that is not called living, so instead of blaming anyone, your sister should be grateful that your mom will now die in peace and pain free.
Does hospice give pretty strong drugs to keep their patients comfortable and pain free when one is in their facilities? Yes, they do. And it's not to kill anyone, but again to keep the patient comfortable and pain free until they leave this world for the next.
So enjoy whatever time you may have left with your mom and make sure you leave nothing left unsaid, as the hearing is the last sense to go.
God bless you and your family.
KAM1973 Oct 2023
Hospice offered up to 5 days respite care once every 60 days . I wasn't there when the social worker offered the take her by ambulance and clean her up. So I am not sure if my sister missed some of the things that were said.
NightHeron Oct 2023
There's probably little you can say to get through to your sister, but what quality of life is this, even if she improves enough to go back home to your poor father? What quality of life for either of them? Losing someone is hard, even someone who's this bad off, and it's evident that you and your sister love her very much. But you have to let things take their course here. We were not, as humans, meant to be living this way, with no cognition of our surroundings, believing we're children, in fear, incontinent in a major way. She's comfortable now, not fearfully banging on the walls, not soiling herself all over the house. She has some dignity. She's probably dreaming about people who went before her, like her parents. I hope your sister can weather this and not try to rip her out of that comfort.

Tired62 Oct 2023
I'm not too sure what to say to you but I'll give it a shot....First I'm very sorry that your mother is EOL...Back in the 80's I worked on the Alzheimer's Unit for a time, and I can tell you what I DO know about the disease and where your mother seems to be at, at this point.
As the disease progresses, the brain no longer functions for the entire gamut of every organ in the body in the body. Everything begins to fail. And as I'm sure you know, things can turn very quickly in the end stages of this disease because of this. Late stages are the shortest and sometimes takes the family by surprise.
Sadly, the disease ravages and destroys the neurons in parts of the brain involving memory. In later stages, the diminishing affects involve those parts of the brain responsible for reasoning and speaking, which in turn dismantles personality and social behavior.
It sounds like hospice is attempting to give your mother some dignity...Again, I'm so very sorry. I spent over a year on the unit - I finally couldn't take it anymore - and it wasn't for those I was caring for. It was watching the families go through it that really got to me.
My heart goes out to you. xoxo

lealonnie1 Oct 2023
For a whole year, I prayed daily for God to take my mother who was suffering from advanced dementia and crying for her deceased parents and siblings. By the time I got hospice on board 2 months before she passed, she was closer to death than anyone had realized. She turned on a dime one day.....went from interacting with others in the activity room at her Memory Care Assisted Living facilty, to getting in bed and going into a semi coma immediately. She died 1 week later w/o ever waking up. Did hospice "kill" her? Of course not; advanced dementia killed her. And if I had my druthers, God would have taken her out of her misery a lot sooner than He did.

Why try to extend the life of an elder suffering to THIS degree?

Consider it a blessing mom is quietly sleeping and relaxed now. Let nature take its course and know all her suffering will end soon.

My condolences on all you're going through.

cwillie Oct 2023
It's up to you and her POA to ask what is going on and why she hasn't awakened. Because of her behavioural difficulties she has no doubt been drugged into a stupor, you should also be aware that some anti-psychotics are contraindicated for certain types of dementia (I know of a person with Lewy body dementia where it even prove fatal). Most of the other replies seem to aver this is a merciful turn of events, you must decide whether or not you feel the same way.

KAM1973 Oct 2023
Yes this is end of life care covered by Medicaid. I have been there everyday. And she is sleeping soundly. I have spoken to the doctor who is the medical director and her nurses. They all basically say, she was closer to end of life than we realized. My sister is now "blaming" hospice saying they are killing her.
AlvaDeer Oct 2023
Your sister's grief reaction is common. Hospice is very used to this reaction. Sister should speak with Hospice and medical doctor as she is unlikely to take your "word" for anything.
SusanHeart Oct 2023
It is common for mid and advance Alzheimer's sufferers to have hallucinations and anxiety and for some mind boggling reason stop taking showers with or without assistance. If your mom was soiling herself and not wanting to clean up, throwing tantrums again normal for Alzheimer's, sad but reality and yes it should be medicated for the safety for themself and the people caring for them.

It takes a very special group of people to chose to work in the care of patients with this vicious disease as living through it I can tell you it is not for the faint at heart.

Please know that hospice is there to keep our loved ones comfortable , without pain, without anxiety and fear. Individuals with Alzheimer's are aware that something is changing they cannot remember things, they forget where they are and only remember the past and that frightens them.

Best wishes and strength to you and yours and this journey is not for the faint at heart.

Beatty Oct 2023
Awake but with fear, panic, confusion, incontinence VS calmed into sleep/stupor.

It may be that Mom's body has just reacted this way - to the medication or there is progression of infection or disease. Eg decline from pnumonia or sepsis can be rapid.

Old age is hard.
Dementia is awful.
Shock & loss take time to accept & grieve over.

So sorry you are going through this.

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