Can a family member care for Mom’s end stage on their own? Or is skilled nursing care suggested?

Your sister is in for a hell of a journey. It is incredibly hard to keep someone with dementia at home until the very end. It’s possible btnirs hard. Your sister won’t be able to do it alone and she will need A LOT of support.

It looks like its going to have to happen. Its a shame people don't consider Medicaid when looking at care in the future.

Its going to be hard and she is going to need a lot of help. Its a Senior caring for a senior.

Sounds very hard. Is there any money to hire some help for your sister? Is your mom on hospice?

I coped with end stage for my own mother by myself, but she was dying of cancer and the end was quick – basically final deterioration over a week, after three months going downhill more gradually. I slept when she slept, an hour and a half at a time. I couldn’t have done much longer. How long do you expect your mother’s last stage to last? My guess is a lot longer, but perhaps not quite as intense. You have a serious problem to deal with. My sympathy.

Has anyone spoken to her doctor about getting her set up with Hospice? I believe Medicare will pay for that or at least a good portion of it and perhaps her supplemental the rest. That way your sister would at least have some help, support and guidance as things progress.

First my sympathy to all who are dealing it have dealt with this.

My sisters (there are 4) all promised Mom she will never have to go into a home. Ever. Mom refuses it. I tried to get them on board and they see it as a death sentence.

No no idea how long Mom has. Could be a year...could be 5. Yes. A definite quandary. There will be $0 for caregiver aid, any medical supplies, etc.

I awaiting an accounting on mom’s trust. I suspect negligence and gifting that will penalize Medi-Cal possibly up to 2 years. (DPOA paid a sister to care for Mom without a caregiver contract or taxes set up.)

Hospice is where they go to a facility, right? They don’t send care to a person’s home. Which means until Mom doesn’t know who we are anymore, she’s going nowhere.

Oh dear. How much did your sister give to what family members as part of her sadly mistaken notion of spend-down? And when? What I'm wondering is if there is the faintest possibility of their giving it back. It would be embarrassing and awkward but still better than the existing... SNAFU.

Who was the paid caregiver?

The skilled nursing required - unless there are medical issues separately - is a steep learning curve but isn't impossible. What IS impossible is for one person to carry the likely workload unaided, 24/7, for an indefinite period which could easily stretch to years. And, of course, the other big question: what if something happens to your sister? What's the back up plan?

May I offer to join you in banging my head on the desk and groaning softly? If your sister is panicking, meanwhile, encourage her to stop doing that because it won't help.

Of course family can always provide care.

Although different hospice organizations can operate differently in different states, the philosophy of hospice from its beginnings in England as I recall, was to enable someone to pass comfortably. Translated, that typically means in their own home and surroundings...there are so many misunderstandings about hospice and hospice care. There are hospice houses/facilities, but generally those rooms are for those who have no one else to care for them or it is impossible for someone...i.e. maybe an elder couple and the spouse cannot provide all the care.
Every medical professional, nurse etc...was taught how to do what they do. And love is a huge power...so if someone loves or is motivated enough to learn, you can do it...but even for the most devoted to be expected to care 24/7 is a massive undertaking, and there could be unexpected and/or scary things that might crop up. This is where hospice may have a nurse on call to guide you or support you and the family.
MediCARE covers hospice. Talk to the medicare people. You might want to touch base with an elder law attorney as well...one who charges by the task, not the hour, who can guide you through the financial implications. Holding good thoughts...

So your mother is living three hours away from sources of help in the care of a woman you describe as unstable, to whom your DPOA sister has - alas - gifted money without a formal caregiver agreement.

Between them, they are making a right pig's breakfast of this.

Would you be prepared to consider applying for guardianship? Would there be any possibility of gaining other sisters' agreement to that? You could pitch it as rescuing your DPOA sister from the proper pickle she's got herself into, preventing a calamity with the caregiver sister, and, above all of course, getting your mother's care plan under the control of less incompetent people. It would not have to be part of a Master Plan to lock your mother away contrary to everyone else's wishes, in fact it shouldn't be, but at least it would free the family to have a rational discussion in your mother's best interests.

metmij, this is so much to handle, so glad you are on this site and for the fabulous replies you’re getting! I’m an only child with a mother similar to yours, and I’m always so sad to be on my own but your situation puts it in a better light. :0 Our commercial health network (I’m in VA), I believe part of BCBS, has an intake office to evaluate for hospice or palliative, they don’t come out often but they do come and it’s good support. I hope you can access something similar. Was directed to them by the case manager at the hospital during mom’s discharge. Had called nonemergency ambulance for pain to have her admitted and do a CT scan. Sending you my best wishes. 💐

I had my Husband home with me the entire time. (I did place him in respite 1 when I went on a vacation)
Yes it was difficult, but never impossible.
I had help from Hospice the last 3 years of his life. Don't think I could have done it without them or the VA
But my decision to keep him home was based on 1 thing. Safety. As long as it was safe for me to care for him and as long as it was safe for him for me to care for him then I knew we would be all right.
It was hard watching him decline but I would have seen that had he not been at home.
We did have some funny moments that I would have missed had he not been with me.
The constant noises he made (moaning type noises) bothered me for a while then I got used to them now I miss them.
Took me a while to be able to sleep through the night. Was so used to getting up to change a brief or to check on him.
Took me a while to get used to the quiet. No more noise from him, no more noises from the alternating pressure mattress.
There was no "skilled nursing" involved for me.
I did have a Hoyer Lift that I was taught to use. (Thank you Hospice)
I got the education I needed as to what to expect. (Thank you Hospice)
I got the support I needed. (Thank you Hospice)
I got meds delivered so I did not have to get them (Thank you Hospice)
I got all the supplies I needed (Thank you Hospice)
As you might have guessed my next statement...If you do not have Hospice involved yet make that call. You will get an amazing amount of help, support, education, supplies, equipment. As well as weekly visit from a Nurse and several times a week a CNA that will bathe, dress, order supplies.

Please read a pamphlet, you can download..free..called Crossing the Creek. Very informative there are many others like it but this has a way of explaining that is great.

Oh good Lord above. Just when my head was getting better...

I can imagine APS are not your favourite people right now.

There has been what the Civil Service call a buggers' muddle, hasn't there. I have a horrible feeling that if you gave that APS team a family tree and asked them to identify the members by name, job title and brief summary, they would get it quite spectacularly wrong.

Mind you, to be fair I wouldn't have their job for all the tea in China.

Have you consulted a lawyer? Do you feel like doing that?

Try Hospice, It allows 6 Months for Care and a Good One, hun, For a Terminal Illness...Medicaid pays for this.xx

Sign your mother up for in-home hospice and yes, you can do it at home. With guidance and a little training, I kept my DH home until his body quit on him at age 96 yrs 8 mos. He was actually ineligible for Hospice until 3 days before he passed.

But Hospice was a Godsend those last 3 days. Just FYI, I was a 24/7 caregiver with no help other than HomeHealth once a week to check on him. It can be done.

That is a choice you and your sister must make. My DH passed last year when I was 66 yrs old, just so you know I am in the same age-range as your sister.

Unless the patient is on Medicaid or private pay, Medicare only pays for Hospice services and not Room & Board in a hospital or nursing home, or other facility, except for caregiver respite patient care stays, like 5 days.

That's what hospice care is for. Use it. It's covered by Medicare, not MediCal. And smack your sister for her stupidity as she should've known better!

You need medical professionals to provide care for an Alzhemier's patient.

Thank you all. I love this forum. So much good info.

Caregiver literally dumped my mother at another sister’s house with 20 hrs notice because she’s upset I’m being supplied with the accounting by DPOA. She’s also filed a DVRO (based on what I have no idea but she will get creative) for protection from me against her, her family AND my mother. She already filed an RO packed with lies in January 2018 and lost. I’m being abused!!! Unbelievable how she dumped Mom like that and told my sister to come get Mom’s belongings the next day. Mom is confused and sad. Psycho says she wants nothing to do with us.

Someone is hiding something and her vendetta against me is relentless. Restraining orders. Easily abused and are regularly. I hope she rots in hell. Meanwhile my 3 other sisters and I are figuring out what is next. Doctor. Church. Familiarity. Punishment to Mom? That’s heartless and this jerk got $100K tax free taking care of her. I tried to warn the gang. Nobody listened. I truly believe my sister is insane.

If I am served, I’m prepared and will attach the previous denied RO record to my answer. Evil.