Looking for your collective wisdom and experience on options for 24-hour care.

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.

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.

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.

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

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.

The lawyer appears to be spot on about the house. It needs to be documented that Uncle has been providing care that has kept her out of a NH for some amount of time, it may vary from state to state. Is this lawyer an Eldercare attorney?

I believe that Gma's home and one vehicle are exempt assets until her death in any event.

You should also clarify with the doctor if s/he thinks gma needs NH care, memory care or assisted living. They are very different things, with different costs.

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

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.

Facilities do not do well...I think they only work when the person can still speak for themselves and ask for help.

I would prefer a senior group home (residential setting with just a few residents) for better care. Then you can bring hospice in to help.....
Or maybe your state has live-in hospice.

They also are generally less expensive than 24-hr nursing homes.

These two would be the most graceful and homey-type settings for your grandmother.

Blessings to you and your family!

The OP didn't mention where she lives (or, more important, where the grandmother lives), but it appears that even a nursing home in the most expensive areas (such as NY as rocketjcat and others have shown) would cost less that 24 hours of in-home care by professional providers. In the nursing home where my mother is, there are no private rooms except for those where there simply isn't a roommate at present. However, roommates can provide some companionship, and my mother is fortunate to have one much younger (although I don't know why the latter is there other than she needs a wheelchair to get around) who is fine mentally and used to be a nurse administrator, so she tells us when she observes anything happening with/to our mother. Thus the NH might provide care by "the village" at less cost than frantically trying to provide the care at home.

One unknown is that the OP didn't indicate where grandmother's assets would cover NH or at-home care for the rest of her life such that Medicaid would be unnecessary. If hospice is being suggested, it appears the grandmother's life expectancy isn't very long.

You've gotten some great ideas. I like the idea of a group care home - seems like a good compromise between nursing home & 24 hour in-home care. A friend of mine got her parents into one that was recommended by her physician. Is her physician a geriatrician? Or does he have many elderly patients? Many physicians are clueless about senior placement.

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.

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.

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.

I understand how difficult it is to have to make such huge decisions for our loved ones without the help of someone who understands what options you have and know the costs involved. A Place For Mom was very helpful for me.
When Hospice came in to give care, all supplies were covered and they knew how to keep my mother comfortable. Along with a Social worker who understand your needs as well. My mother was losing weight fast with no appetite as her body was shutting down and no longer able to process food. My mother was in Assisted Care for only three weeks before she died, but I had peace of knowing she was being taken care of and not alone.
I knew that forcing my mom to eat would only prolong her discomfort, dying and dignity.
The Hospice Care was far more helpful than some of the Care people in the facility.
I pray God will give you and your Uncle guidance and peace.

When my late mother reached the "passing out" stage due to very low blood pressure, I promptly left my Maryland home and moved to Massachusetts. Since my mother demanded to live alone, I had to put my life on hiatus.
Passing out is a medical emergency. 24-hour in-home care is going to eat up funds like rapid fire. She may want to apply for Medicaid, if qualified.

You may need an assisted living facility not a nursing home. Check out the difference. It is hard to care for a person in a home and provide for all of their needs. The assisted living will have activities and other people to do them with. Often this is a better situation. You cannot provide this social interaction in you home even with caregivers. If two POA's cannot agree, get a geriatric care manager to do an evaluation. Once this professional makes a recommendation, it is hard to go against that. The doctor can also give their opinion regarding care.

Certainly, have her assessed by a good Geriatric Care Manager. Inquire at local Senior Center or Local AAA that is Area Agency on Aging (State Home Care Agency)

Question - I love the idea of including a good Geriatric Care Manager in the process of deciding what to do for Gramma. Since I don't have POA, do you have any suggestions on how I can make this happen? My initial thought was to bring it up at the meeting with the doctor so my mom and uncle can't just blow me off. But maybe there's a better way?

As others have noted, in-home care is MUCH more expensive than a facility. Over 2 years ago we started one hour a day weekdays only at $20/hr to monitor her. Off shift (nights/weekends/holidays) would cost more per hour. Just using $20 (and that amount varies widely depending on the area, as does the cost for a facility), it would be over $15k/month! Quality of the home care aides varies as well (reliability and concerns about their morals!)

Our plan to keep mom in her home and increase care was thwarted by her refusal to let anyone in. NH is the more expensive option. AL/MC falls in the lower end of care cost (where we are this runs about 8k/m, which would be about 1/2 the cost of in-home care.) Your mom, you and uncle can visit often, take her on outings sometimes if she is able, etc. If she has problems eating, a special diet can be arranged (either higher calorie, or if she has swallowing issues, they can provide for that as well - can mom or uncle? Are they even aware of what caused the weight loss?)

Although uncle is there some of the time, which reduces home care cost, is he really qualified to care for your grandmother? Does he or someone bathe her, allowing him to check her body for any issues? Our mom developed cellulitis, a serious skin infection, literally days before our plan to move her to MC. She didn't even have enough sense to let one of us know she had a wound and she was nowhere near a 5 or 6 on the "scale"! It can kill.

Concerns also arise about the current care situation. Sounds like grandmother is alone part of the time. Although you do not specify her ability to perform ADLs, what you have said indicates that she can still manage some self-care. If that is the case, NH does not sound like what she needs (if one needs skilled nursing care, NH would be considered.) Are there precautions in place to keep her from starting a fire (stove/microwave, etc) or wandering? When she is alone, what happens if she falls, wanders, gets injured or becomes ill? In these events, or worse if she dies, will mom and uncle feel responsible for her condition or death? It would be better for grandmother to be in a safe environment, cared for 24/7. If she ends up in NH due to fall/injury/illness, it will be even harder for her (and possibly more expensive!)

Regular AL is also not advised, but understand that MC is considered AL. It can be available via an AL facility, some NH and some residential homes others mentioned. The residents get more personal care, as needed, socialization, monitoring and are in a safe locked down place to avoid wandering issues.

We also have shared POA (one brother only, as the other was not local at the time this was set up.) We went with MC despite that one brother insisting she would prefer the AL (I said no, nothing to prevent her wandering - he replied she doesn't wander... not yet because she was in a familiar place at home!!! Staff also said no.) She has, in MC, had several episodes of insisting she needed to get out, go home, she had guests coming, etc, so regular AL would have been WRONG!!

Since she has funds available, private pay would apply for now and uncle can continue to live in the home. Consult with Elder Care attorney could resolve any issues/questions about the home, potential need for Medicaid, etc. Meanwhile, check out all available facilities, get details, compare costs and care provided, etc. These facilities can vary widely in cost and care. Don't just assume the fanciest looking place is the best! We chose between two places, recently built/rebuilt. The more expensive one had two bedrooms sharing a bath and depending on which room had an awful view of the parking lot and 4 lane busy roadway! The one we settled on was nicer, had a private room/bath, was less expensive and had a nice view! Mom actually ended up being the first MC resident, despite the infection delay. She still mostly cares for herself, but she needs a safe place!

As another option, you’re family may consider is an assisted living group home. It is a different environment than the typical nursing home. Most times the caregiver to resident ratio is much smaller. Also, a home environment can be a little more welcoming. Be honest about your concerns when interviewing potential places to live as well as do your homework. Not sure about regulations in the state you are in, but here in Arizona the homes are inspected by a state surveyor each year.

Do not call A Place for Mom. I have heard too many nightmarish stories about them. Instead consult with a Geriatric Care Manager. Doc may be able to recommend one.

As far as the home being exempt from transfer is gma at some point needs Medicaid, in my state that only applies if the move is from home to nursing home. Assisted living memory care would not qualify for the home exemption in my state.

Then are you sure she needs and would qualify for a nursing home? Doc would have to prescribe the appropriate level of care. And I would not have gma present for the facility discussion. That could cause many problems and make it easier for mom and uncle to have the necessary discussion with the doctor. Perhaps you would take gma out for a treat nearby while the discussion takes place

Finally a continuum of care facility, one that has at a minimum memory care and nursing home should she need skilled nursing in the future. Much easier move if necessary.

Also check into board and care homes. Smaller facility, more resident centered care and can be cheaper.

gdaughter: Agreed on the Medicaid app.