This sounds really horrible, but I don't want my mom to come home for hospice care. I know it's absolutely going to destroy me, seeing her hour after hour in her state. She has dementia and I don't even think she will be that aware of her surroundings at this point, but my siblings are pushing for this as of earlier today. Of course they're going to force the decision on me since it's my mother's house, but I am tapped out emotionally and physically from the 3 years that I cared for her before she had to go into long-term care. I also have trouble with having strangers in my house or even siblings coming by at whatever hours. I am an introvert and not being able to have any time to myself is going to take a drastic toll on my health. Has anybody else gone through this?
Why didn't you end up doing this?
Where is your mother now?
You know your siblings are trying to bully you into at-home hospice. When your sister says there only needs to be someone there 12 hours/day, she is figuring on YOU being the caregiver for the other 12 hours. And, since you are always there, the other siblings will start missing their hours. And why not? YOU will be the backup caregiver, and I bet you will end up being the 24/7 caregiver before long. Believe it.
Keep us updated.
But then (maybe the next stage of dementia?), the verbal abuse pretty much stopped, and she became a lot more pliable. Maybe as she became physically weaker, she realized she did need my help? I don't know. And so I stopped thinking about moving out. Also, (and I verified this by researching it), my sister found out from the elder care lawyer that since I had been the caregiver for at least two years that Medicaid wouldn't be able to take the house, so that gave me more security.
My mom is now in long-term care, as she got so weak eventually that she couldn't even stand to get to the bathroom (or even for me to clean her up.) I have health issues, and I am simply not strong enough to hold her up and clean her up at the same time. (That would probably be hard for even a stronger person.) She also had a bedsore wound that wasn't healing due to her sitting most of the time. (She slept in her recliner chair, and had been for years.
I know (about the twelve hour thing), and after seeing a lot of responses on here, and doing some reading up elsewhere, I definitely am against this, and adamant that I am not going to care for her the other twelve hours. I plan to talk to the social worker at her place, but I am also waiting until we get the official assessment results from the doctor. I'm really hoping that they just recommend that she stay in the home, as it would prevent a lot of family friction, but I am prepared to make my case if it becomes necessary.
They were stoic to the point that revealing illness was consider among them to be weakness just short of conspiracy.
Months into my Godmother’s illness, at the age of 82, the information was shared with me. I was in my fifties, with two HS aged children.
By then she was desperately ill, still at home, and was being cared for by my youngest aunt. Both were single.
Too sick to leave the toilet and wash basin, my Godmother REFUSED HELP. Her sister grew more and more frail, more and more distressed, begging for help, no one knowing what to do.
The day came when one family in-law marched in, took over, and physically pulled her out of the house and to a hospital, where she was quickly diagnosed with metastatic cancer of the pancreas and liver.
After a brief hospital stay, the hospital moved to send her home. They told the “caregiver” sister she would need a hospital bed to be set up in the living room, in a small house 100 years old, with NO SANITARY FACILITIES ON THE FIRST FLOOR.
To her CREDIT, my (perpetual) caregiver aunt, after caring for her mother (severe dementia), her brother (advanced Parkinson’s), and then her sister, FINALLY said NO.
My Godmother was then placed in a residential hospice, where she died a few weeks after she was admitted.
I am now POA for my youngest aunt, the survivor. SHE REALIZED that SHE could be “destroyed” if she “brought her sister home”. As it was, she quickly developed shingles almost immediately after the funeral and suffered for years with the aftermath.
Do you have ANYONE on your side? You certainly do have ME.
Don't let yourself be 'Voluntold' that you have take care of mom if she returns from the nursing home.
If you are done with being a caregiver, then let that be the end of it. Absolutely refuse to continue with it.
Why are your siblings so adamant about mom going back to her house if she is out-of-it with dementia and won't even know that she's in her house? If she's already in hospice care that's paid for by Medicare and her secondary insurance, so it can't be because they want to protect assets or potential inheritance.
Seriously, why don't you ask them why they want her to leave the facility she's getting 24 hour professional care in, to return home to a person who cannot provide this for her.
Who has your mom's POA? I hope that it's you since you were her caregiver. If you do have it then there's no discussion. It will be your decision to keep her where she is.
If you don't and your siblings want her to go home, explain your situation to the nursing home she's in and tell them that you will not be available to care for her if she returns home.
Your siblings cannot just throw you out either. There will have to be an eviction process and you are also one of the heirs to your mom's property. This will take a long time so don't be too afraid of them.
Your mother is in full-time care because she needs it. Hospice simply takes care of the medical side of her care while she's in place, and they focus on the quality of her life. They don't change diapers and feed someone.
If your mother doesn't require anything like wound care, you'll see a hospice nurse once or twice a week at most until she begins to transition.
Tell your sister that taking your mother home at this point is abuse, not making her more comfortable. Make it VERY clear.
She does have a worsening wound (from her being bedridden most of the day), so hopefully the hospice nurse would come out more often than once a week, but even when she was at home they would only come out 2-3 times a week. I know things are different when you're in hospice care, but I still don't want my mom getting a horrible infection.
Finally, I have real concerns that if she's in a more familiar surrounding, she might try to get up in the middle of the night and then fall. She's very weak now, and maybe the hospital bed railings would prevent that (I hope), but I would still be worried.
If she is unable to get out of her home in a fire, that's an "unsafe discharge". Please use those words.
it’s unbelievable how siblings on these posts who are drive-bys and bystanders suddenly wake up when end is near !!!! Be firm. Visit as often as you can !!! And feel confident you did as much as you could for her…
siblings cannot say same !!
take care
Do not allow this to happen. Tell your sister if she wants Mom home then she needs to do the care. You did your sgare, your not doing it again.
I just hope I can get my sister to listen to this.
When I go to see her at the home, especially more recently, she has declined so much. She barely interacts with us, and cannot really even articulate anymore, even when it is very obvious she is trying. Every time I leave after visiting, I am just devastated for the rest of the day after seeing her like this. I can't even imagine what seeing her every day for long periods would do to me.
And I have major health issues myself, so there's no way I can take on more physically than I am doing now. My A1C alone went up some five points the last few months my mom was at home, because I was eating at strange hours and no longer was as diligent about being careful with what I ate. Sounds awful, but I became so depressed for a while that while I still tried, I didn't care much about maintaining my own health.
And it's NOT going to fall all on me.
Your mother already REQUIRES round the clock care, or she wouldn't be in a nursing home.
Is this about saving money?
Hospice at home means someone needs to be able to deliver comfort meds, like morphine. Aides can't do that. I could never, ever, ever have given my mom morphine.
Tell sis "no, I can't possibly take this on".
Has someone got Power of Attorney?
Asure them that if they send her home, you'll be staying in your room with the door shut.
I know everybody says that "they would never sue family", but sometimes when people are grieving, they change their tune.