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Grandma's doctor appointment this week resulted in a reclassification of her dementia rating. She is now on the borderline between 5 and 6. Her doctor is recommending 24-hour care, due to rapid weight loss (13 lbs in 2 and 1/2 months), dwindling appetite and thirst, a new symptom of randomly passing out, and excessive sleeping - along with the usual deterioration of logic/reasoning/understanding. There's probably going to be a wide variety of opinion about what to do. My mom and my uncle share POA. My mom wants to looking into a nursing home. My uncle, who still thinks he can "cure" Gramma's dementia by making sure she stays hydrated, will probably try to deny 24 hour care is needed. We are meeting with the doctor (my mom, my uncle and I) on the 31st, so the doctor can be the one to explain things to my uncle. In the meantime, I was thinking it would be good to take a logical look at the options available for 24-hour care, and make a list of the pros/cons associated with each, as well as practical questions that have to be answered like assets, costs, etc.


#1 - nursing home. Would have to explore impact on assets including house and investment accounts.


#2 - 24-hour in home care. Would have to explore cost, hiring staff, contingency plan if staff doesn't show up.


Is there a #3 or #4? What kind of details should we consider? For example, let's say we could afford to keep her in her home. Do the socialization and activities in a nursing home achieve better quality of life outcomes than being basically shut in at home? I'm hoping that looking at everything logically will help us weed through the options to find the one that's best for HER, not our guilty consciences.


I am looking forward to your replies. Going to make a ginormous list to take with us to the doctor's office.


Thanks!

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gmadorisylove, it's not an easy decision, do we keep Grandmother at home with 24-hour care, or relocate Grandmother to an elder care facility where she has a village that can look after her. Then there is the challenge of getting the rest of the same on the same page.

Now, if Grandmother stays home, she would need 3 shifts of experience caregivers to help her. Everyone would need to take a shift. Do you think your Uncle would agree to that, especially if Grandmother needs more help then having a glass of water a few times during his shift? With dementia some people will wander during the night, so the night shift cannot just sleep, they need to be alert.

If Uncle says to hire 3 shifts of caregivers, he needs to see if his Mom can budget for that expense? My Dad had 3 shifts, in our area it cost him $20k per month, yes per month. Once Dad moved to Assisted Living/Memory Care, the cost was between $6k and $7k per month. Dad loved it there, loved being around people closer to his generation, etc.

Now, if Grandmother cannot budget for those cost, she can apply for Medicaid [which is different from Medicare]. If accepted Medicaid will pay for her room/board and care in a Nursing Home.

Oh, the randomly passing out makes me wonder if Grandmother is on blood pressure pills and the doses are too high for her.
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gmadorisylove Jan 10, 2019
Hi! I think her doctor did adjust her blood pressure meds, so maybe the passing out will stop.

Frankly, if it were up to me, there'd be no question. My grandmother's biggest beef these days is that she is so bored and she can't do anything anymore. Her friends are afraid to take her anywhere because she won't use her walker and they're afraid they'll hurt themselves if she falls and they have to help her get up. I totally acknowledge that it will be very painful and difficult to put her in a NH, but I really think the "village" is the ticket to giving her the best quality of life possible at this time.
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A few random thoughts:
What is the availability of resources in your area? Are there nursing facilities nearby? Are caregiving agencies around? Do you/mom/uncle live near gramma so visits and oversight can be maintained? Who has POA?

If NH are nearby, check out a couple before the 31st. Find out what the private pay rate is. Check caregiving agencies for their 24/7 rates. You may find they are higher than the NH. (Just FYI Moms NH private pay in NY is about $12K a month, but every state average varies. 24/7 at home would be about $20K. ) If gramma has assets like a house and savings, the savings would probably need to be used to private pay her in the NH until those funds run out and then Medicaid may be needed depending on circumstances.

Regarding your socialization question, I feel that the more eyes on Mom the better, both socially and for health reasons. On her floor there a Nurse Practitioner that can write scripts, RNs, LPNs, CNAs and recreation therapists. There’s a PT rehab unit attached if they decide she needs PT. Even the cleaning people and the dining room servers give me updates on how Mom is, like leading the breakfast table in song or whatever. It feels like a community of carers, instead of just a daily threesome, and they are skilled in managing difficult behaviors. So in that regard my Mom is in exactly the right place, but everyone is different , and you know your gramma best. On the downside there isn’t the one on one constant care she would get at home. Only you can decide if that’s OK or necessary.

And there’s nothing to feel guilty about...you’ve done nothing wrong. And you’re looking for the very best situation and outcome for her. Nothing wrong with that.
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My first thought is who is caring for grams now, and I suspect it is not your uncle.  24/7 in-home care would likely be more expensive than a nursing home, if you get competent help....Also, unless you arrange this through an agency you would need to have backup people for when the helpers call off sick.

Grace + Peace,
Bob
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gmadorisylove Jan 14, 2019
Hi! We currently use an in-home care agency to provide some assistance to her, but only for four hours per day. My mom checks in on her when the caregiver isn't there and my uncle is at work or away from home. But my mom just "checking in" on her is not sufficient, and she doesn't seem inclined to hang out at Gramma's until my uncle gets there. So in my mind, it's not providing the level of care needed.

My mom has started the process of increasing the hours with a caregiver to 8 hours a day, from 11 a.m. to 7 p.m. I have some issues with this. To your point, what will we do if someone calls off? And what about the other 16 hours per day? I don't think my uncle will want to be held accountable to be there with her promptly at 7 when the caregiver is supposed leave. And my mom isn't likely to want to be there from 9 a.m. to 11 a.m. when my uncle leaves for work. Also, what about weekends? I really hate that her care is dependent on my mom and uncle. She could not have picked two more self-centered and inept people in which to invest power of attorney. I'm really not understanding why, when the doctor says "24 hour care," my mom thinks a few hours a day on her own is okay. Having a really hard time keeping my anger under control these days.
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It sounds like your grandmother will be private pay wherever she goes, so I’d start by looking at AL/memory care. It will cost less than a nursing home, so her assets will last longer and the environment is nicer.
Her symptoms sound like an evaluation for hospice is warranted. Did you suggest that to her doctor? They are not always proactive about that. Medicare covers hospice and she could receive hospice care while living in an AL. That would increase the amount of care she’d get without increasing cost.
First step I’d take would be to pick out an AL and have their nurse come out to do an assessment. Don’t give up if the first one won’t accept her, different ALs accept different levels of care.
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gmadorisylove Jan 14, 2019
The hospice angle is an interesting thought. I am not fluid in the details of hospice and its requirements. Will definitely look into it. What would I use as an argument with that if the doctor were to reject the idea out of hand?
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Hi! Thanks so much for your replies! In answer to some of your questions:
- My mom and my uncle hold POA jointly
- My mom lives about 1 mile from Gramma's house
- My uncle lives at Gramma's house, but he does work a full-time job, so he's gone M-F, from about 7:30 a.m. to 7 at night
- We live in an area where there are a whole lot of nursing homes to choose from
- We currently use a caregiving service for about 20 hours per week
- My grandfather left her with a decent amount of money in the bank and investments
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gmadorisylove Jan 10, 2019
Oh- also, my mom visited with gramma's attorney yesterday. He said he could try to help bring the family together for decision making. He also said that since my uncle has been living at the house for the last 11 years helping to care for gramma, he might be able to make the case that the home should not be eligible as an asset since they'd basically have to kick him out. I don't know how realistic that is.
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Be aware that in-home care will run at the very least, $25 an hour. That's $600 for one 24-hour stint!
It sounds like she needs an assisted living facility or skilled nursing facility. It is costly, but not $18K a month.
My in-laws (FIL has dementia) moved into an AL and their attitudes changed dramatically. People need human interaction on a daily basis in order to feel like life is worth living. Elderly people become more and more isolated as they become more impaired. My in-laws doctor said that people in quality facilities live much happier, healthier lives than those that are cared for in their homes. Plus, in-home care by an agency leaves you open to wondering how they are really caring for G'ma.
I don't envy you being between your mom and uncle, but it sounds like you have your G'mas best interests as your goal. Thankfully, your uncle is willing to go to the doctors and hear him out regarding what's best for G'ma.
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gmadorisylove Jan 14, 2019
I was thinking that AL would not be enough support, but reconsidering that based on the responses I'm seeing here. I think you're absolutely right about the interaction piece. I've noticed a marked decline in her health, cognition and attitude since she's been more isolated.
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Well, you've got your hands full! Shared POA seems like it could have the potential to be very difficult. Good luck to you all in finding common ground. I think having the doc explain the situation to you all is an excellent idea.

Is Grandma living alone? Who takes care of her now?

As far as I know, all her assets would ultimately be used to pay for her NH care. It's a very sad reality. The same would probably be true for her to have 24 hour care.
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Your comment about gramma randomly passing out, made me think something to investigate may be Vasovagal syncope. Mom suffers from this, for her it’s usually brought on while going to the bathroom or right after. Her doctor discontinued all BP meds and put her on a stool softener and that seemed to help. You may want to research it and see if her symptoms are similar.
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gmadorisylove Jan 14, 2019
Will check into that for certain. Thanks!
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A placement specialist helped me find the right place for my Mom and there was no charge to me. My Mom also had the randomly passing out thing. She received wonderful care in a dementia facility.
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uwantcr66 Jan 12, 2019
Hi- I had some interest in this question and your answer. I. In the same dilemma with my mom as far as home care versus assisted living/memory care. Definitely pros and cons to each but what is this placement specialist you mentioned? How do I find one in my area? Is that what they’re called? Thanks!
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Whe an older person has money to private pay and a place to live while on a wait list, they can choose a nicer place. Check out the local facilities and apply to the best. When her money runs out she'll qualify for Medicaid. They will probably put a lien on the house if your uncle decides it works for him to stay there.
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