Hi. My mother has Alzheimer’s. Stage 6. Has anybody any experience with caring for a family member at this time? This means no $ for outside help or skilled nursing and probs with Medi-Cal.

I’m concerned because it appears DPOA made mistakes and the $ for care is running out. Unfortunately, they foolishly gifted a lot, paid a caregiver without contract or taxes (income was gifted). These things will disqualify Mom for Medi-Cal or Medicaid, so DPOA, who is also my 67 year old sister, will take Mom in to care for her to her passing. I imagine this is the hardest phase and requires skilled care.

Any stories or thoughts appreciated.

Thank you in advance. I hope all are well.

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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.
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Metmij Jun 2019
What a fabulous post!

Caregiver: mentally unstable sister who uses Mom as collateral in family arguments. Nobody else can take Mom and all siblings (not me) promised to never put her in a home.

I am 1 of 6. This is a nightmare and actually caregiver has mom convinced I’m evil (because I told her she’s messing up Mom’s future care with her greed). My Mom is refusing to see me because of it. Manipulating and she’s got the 5 of us over a barrel. I’ve reported all to APS who are worthless.

DPOA: stressed sister who now realizes she probably messed things up but I’ve not seen the accounting yet. It’s being worked on. At first it was denied. Hard to tell but $20-40K gifted to various and $61K gifted to caregiver.

Thanks for banging your head along! After finding out Mom is refusing my visits, I’m backing away from family. The toxic is too much and the situation is futile. Pisses me off I’m missing out on Mom before she passes!
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.
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worriedinCali Jun 2019
Medicare pays for it in full. No supplement needed.
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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 Crossing the Creek. Very informative there are many others like it but this has a way of explaining that is great.
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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.
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Zdarov Jun 2019
You were an angel to your mom, margaretmcken, god bless.
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 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 who charges by the task, not the hour, who can guide you through the financial implications. Holding good thoughts...
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Metmij Jun 2019
I will advise to DPOA who has health directive. Thank you!
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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!
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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.
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Metmij Jun 2019
The support will be interesting because she lives a 3 hour drive away from anybody that can help. She is the DPOA who got Mom in this position despite me advising to set up contract and pay taxes. Someone told her to spend down mom’s I think she gifted various family thinking she was doing the right thing. I set that Trust up and when I did, I made it clear that $ was strictly for Mom’s care. Ignored. Worried.
Try Hospice, It allows 6 Months for Care and a Good One, hun, For a Terminal Illness...Medicaid pays for this.xx
Helpful Answer (5)

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.
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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.
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Metmij Jun 2019
Mom currently lives 20 min away with unstable sibling as non-contracted caregiver.

DPOA sibling lives 3 hours away.

I wish it were simpler but trying to have conversations right now are impossible. I took care of Mom for 2.5 years, got her diagnosed, got her Trust set up, got her house sold, handled taking her driving revoked and set up DPOA with health directive. I’ve done what I can and I was DPOA but caregiver bullied, coerced and harassed me to the point of giving responsibility to the oldest sibling. I believe she’s mishandled it but the accounting hasn’t been revealed.
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