My grandmother has dementia, and it’s progressed to the point that she can no longer be on her own. She’s staying with me right now, but space is limited. Her home is even smaller. I know we can’t use her funds to put in a mother-in-law suite. I would prefer she remained at least with family if she can’t be in her own home anymore.
It feels as though the only thing we can legally do is put her in assisted living, which I have an extremely poor opinion of after a horrific experience that led to my dad’s death (I brought him home on hospice after that and was his caregiver until he passed, my mom is here with us so I can’t put grandma in that room). I can’t afford to add the space on for her myself, and I’ve even looked into “granny pods” and similar, but those honestly seem like they’d cost more when all is said and done.
I don’t know how to try to respect my grandmother's wishes while protecting myself legally. If, God forbid, something happens and I absolutely can’t be her caregiver anymore, then I can’t risk it costing my family our home or something like that. Are there even any other options?
As Mom started getting worse I interviewed and hired a caregiver to come a few days a week but she didn't like that. Didn't want to have to "entertain" anyone. Then I encouraged her to buy a small home near me. Nope didn't want to do that either.
So my sister basically kidnapped her taking Mom 700 miles away to live in a cottage on my sister's property. Nope. Mom didn't like that either.
So we moved Mom again, into an ALF near me. My husband and I spent tons of hours over the last 3 months trying to make it work at the ALF. Mom kept going downhill though. I tried everything to let her live on her own. At one point, I investigated buying a tiny home/ADU/Granny flat (with Mom's money) to put on my property . My concern was that when she died my greedy sister would demand half of the money used for it before Mom was even buried.
Mom wandered off 5 days ago from the ALF. The ALF asked us to keep her until a room in memory care became available. It was torture for my husband and I while she stayed with us. She hit and spit on my husband. (He almost went to stay in a hotel and avoided being in the same room with her.) And was verbally abusive to both of us. Out of character when she didn't have dementia. And wandering, restless, confused. Thankfully my daughter (special needs) was already out of the house on a trip to visit her Dad.
Yesterday, we moved her into memory care at the same facility. She was violent, hitting staff and trying to kick the door to the unit over and over again. I asked if that had been the worst they'd seen and they said no but close. Mind you Mom is 5'1" and normally acts kind of frail and walks off balance, but she was like a caged animal full of adrenaline. They eventually had to sedate her.
All that being said, I tried to honor her wishes to live in her home, and semi independently, but sometimes with dementia it's just not a possibility.
If you do look at ALFs be sure to select one that also has a memory care unit if possible.
Our parents/grandparents want to live in their homes (who doesn't?), but sometimes their own life choices/circumstances lead them to a place where that just isn't possible.
Best wishes and prayers for you.
I was a staff supervisor at a very nice AL. It was like a high-end resort. The facility was outstanding. Every resident had a big room that could fit a bedroom set along with a table and chairs or a couch. The grounds were gorgeous. The food was terrific. Every meal was like a high-end resort. The residents had all kinds of activities going on and there were usually two outings a week. Fantastic Assisted Living facilities like this do exist. Memory care facilities that are great do too.
You cab't respect your grandmother's wishes because it's just not practical or even feasible. Every senior's "wishes" are to be kept home with family, but so many times it just isn't possible. You love your grandmother. You will choose what's best and safest option for your grandmother where her needs will be met and she will be safe. That choice is an AL facility or memory care.
That way you and your family can just continue to be her loving family and advocates and not grandmas burned out and overwhelmed caregivers.
And obviously if money is an issue for your grandma, then she'll have to apply for Medicaid.
You say "I know we can't use her funds to put on a MIL suite" have you talked to a lawyer about what is legal, what you can and can not do?
You need to talk to an elder Care Attorney to determine what you can and can't do. If you are not POA and your mom isn't either you might not even be able to place her in Memory Care (she probably should not be in Assisted Living with dementia)
My biggest concern is that I do have some cousins who are only interested in what they’ll get out of her, and I’m concerned about them trying to cause problems. Maybe I’m being too paranoid, but I’d rather be safe than sorry. I don’t want to add any more stress on myself, which is actually why I’m so much more hesitant about a facility. I know that sounds counterintuitive, but I’m fresh off of a hellish experience with one (one of the best rated in our area). My dad spent two weeks in a nursing home for rehab (his insurance wouldn’t cover rehab again after he’d been in and out of the hospital and rehab facilities for months, long story but best explanation is he had an MCO). We all caught COVID days after he went into the nursing home, and couldn’t visit him. It was five days before any other family would stop into see him, and with nobody there to check on him, it was absolutely horrifying. They got him to the ER and found so many problems, including sepsis, multiple types of bacteria… it was horrible. He had managed to take his first steps in months the day before he went into this nursing home, and he left the hospital on hospice. I’m not saying that the nursing home was ultimately responsible for his death, but at the very least, they left him in a condition that people would’ve been arrested for leaving their pets in.
They were one of the better reviewed places in our area. All the facilities are short staffed, as we have a pretty severe medical care shortage in our area. There are some better facilities a little further out, but the one universal rule seems to be to have visitors regularly so they don’t neglect your family member. I do not have anyone I can rely on for that. It would all fall to me.
My grandmother never made me promise not to put her in a home (actually, she always swore she’d shoot herself first). Her preference would be to be in her own home forever no matter what. But after what happened with my dad, I’m actually sick at the idea of putting another family member in one, and it was honestly exhausting trying to visit him in whatever place he was in every day to every other day (and yes, I felt like that made a huge difference even in the hospital).
I’m also concerned that if I build on a suite for her, that she could end up deteriorating and I may not have any other choice but a facility. I don’t know if it affects anything but she has tricare. Im also working on getting an elder care attorney but things are still tight after my dad’s passing.
and yes, this is an overwhelming mess right now, and I’m worried about making the best decisions I can, but I figure that knowing what’s not possible or a horrible idea might help. It’s just not a great situation, absolutely horrible timing, and my grandmother doesn’t even realize there’s something wrong with her. I’ve never dealt with dementia before, and two months ago she was still handling her own bills and balancing her own checkbook.
If you’re caring for a loved one with dementia and need legal help but money is tight, here are some resources that can help you find low-cost or free elder care legal assistance:
Legal Aid: Many communities have legal aid organizations that offer free or low-cost help. You can search for one in your area at https://www.lsc.gov (Legal Services Corporation) or by searching 'legal aid' along with your county or state.
Area Agency on Aging (AAA): Every county has one. They often know about free legal clinics or attorneys who offer elder law services on a sliding scale. Find your local AAA at https://eldercare.acl.gov or call 1-800-677-1116.
State Bar Association: Most state bar associations have a lawyer referral service. Some offer free consultations or reduced-fee panels for low-income clients. Search online for your state’s bar association and look for elder law referrals.
Law School Clinics: Some law schools offer legal clinics where supervised students help with documents like powers of attorney or conservatorship forms for free.
National Academy of Elder Law Attorneys (NAELA): Search https://www.naela.org to find attorneys who specialize in elder care issues. Some may offer free consultations or sliding scale fees.
If you can share which state you’re in, others may be able to help you find something more specific. You’re not alone—help is out there.
What we learned is that all changes in her routine made things worse for her. She became more confused, stressed and paranoid.
In my humble opinion, place her in Memory Care now. Having her move in with you is going to be a huge change. It will impact her. When her condition declines further, you will need to move her again to a memory care facility. This will impact her again. Moving her once to where she will stay is best.
You mention "her home". Does she own property which can be sold to provide financial help and pay for an addition at your home to accommodate her?
Do you have POA for your grandmother? It could get ugly if your cousins fight for control of Grandma and her assets.
Someone needs to have POA for her, and quickly! And, if she still has any mental competence, she should direct funds to go toward her care. Anything left over after she's gone, the cousins can fight over.
You seem to care a lot. And it seems you want to try and take care of her, as long as you are able. You fear the risk of costing your family home. Use your grandmother's funds to pay for her care. If you feel you can afford to do so, then, you might compromise your income and financial stability for a period of time.
It all comes down to one question: What will you regret more?
If you can't or don't want to risk your own financial stability ( and your family's), you have no responsibility to care for your grandmother. If there are other family members who are interested, maybe it is time for a family discussion and decision making about who will do what to help her in her time of need.
You sound like a caring person. Just remember to take care of your own needs and that of your immediate family (spouse, children).
My mother and I are both POAs. There is no other family willing or able to provide any help, but there are those who are already concerned about her going into a home knowing her assets would all be sold and they’d get nothing. I’m both concerned about them causing when she’s gone about inheritances if we don’t put her in a home, as well as the potential problems if she’d have a horrible downturn and we’ve built her a mother in law suite with her own funds.
I adore my grandmother, and admittedly, I’m traumatized by what happened to my dad. I did do my due diligence in researching places for him to go to, even though his stays were temporary. The first issue we ran into was a shortage in our area, followed by staffing shortages in almost every facility. He spent so much time in the hospital and then in rehabs/nursing homes (back and forth for months), that there’s no way I could leave a loved one somewhere without visiting them at least a few times a week… life gets in the way sometimes so I’ve seen it happen, but even with relatives or friends I wasn’t responsible for and just visiting, there is a huge, huge difference In care between someone who has someone checking on them regularly and someone who doesn’t. It honestly got exhausting running around visiting my dad. My mother was hospitalized a few times over the past few years too, and there were periods I couldn’t visit her… again, huge difference.
My father came home on hospice, completely bedridden and in agony, with nephrostomy bags and stage iv pressure ulcers. He was also a big man and it was beyond difficult trying to care for him. Physically, it was nearly impossible, but mentally, it was almost a relief not to be dealing with the problems we’d been dealing with the hospital and later the nursing home. Maybe that’s only because their care was so horrific, maybe I was in kind of a state of shock. I don’t know. This has been way too much to deal with… all of this has only been this year.
Grandma is still handling her ADLs for the most part. She was still on her own two months ago. We’ve tried to get her to move here for years, but she refused (cost of living here). If we’d had a space for her already, she would’ve. She’s just getting more and more confused.
I think what I’m going to do first is cram us all in, combine some rooms, so she’ll have a dedicated room that’s just “hers” for a few weeks or so and see how she reacts. I’m also going to try to speak to an elder care lawyer and see what our options are and how we protect ourselves from the issues that could arise later. Then we can make a decision from there.
I will say that on my end, I’ve had to be a caregiver to both of my parents at different points as well as my grandad. The only thing I can think of that would make actually want to put my grandma in a home would be if she was a danger to herself or us. Admittedly, I have no real experience with dementia, and I’m learning that nobody can really say what path any person will take with it.
Options
1 - At home help. Gather family, friends, members of faith community and volunteers to learn about your loved one's care and care for her throughout the week. Fill in areas without helpers with paid help - home health agency, paid private caregivers...
2 - Assisted living facility (ALF). Most insurance companies do not pay for assisted living. She will need to be able to take her own medications, maybe with a little prompting. She would have access to dining room, private apartment, housecleaning... Usually the person needing the ALF or their family pays for these services - and they can be pricey.
3 - Skilled nursing facility (SNF) or memory care. This is usually covered by healthcare insurance and/or Medicare. The person needs somebody to dispense medications, direct their daily activity, meet their hygiene and toileting needs... There are good facilities and ok facilities. The difference is found by visiting and asking a lot of questions. Visit and notice the residents - clean, engaged in activities, dressed appropriately. Notice the facility - pleasant smell, clean, orderly. If choosing this option, visit often. Keep in touch with the staff and administration for updates and to deal with any issues that arise. If is possible to have a good life in an ALF... or any living arrangement.
“Basic/Level 1: Minimal Assistance:
Residents can typically perform most ADLs independently, but may appreciate reminders or occasional help with tasks.
May need help with some medication reminders or light housekeeping.
Often enjoy independent living within a community setting.
Intermediate/Level 2: Moderate Assistance:
Residents need hands-on help with some ADLs, such as bathing, dressing, or grooming.
May require assistance with medication management or meal preparation.
Still maintain a degree of independence but benefit from more regular support.
Advanced/Level 3: High Assistance:
Residents require ongoing and extensive assistance with multiple ADLs.
May need help with transfers (e.g., from bed to chair), continence management, or other personal care needs.
May require more frequent visits from nursing staff and more hands-on care throughout the day.
This level may include residents with more complex medical needs.” AI
You can also call the licensing board as all retirement facilities are licensed.
Perhaps you can find out if / how many citations a specific facility had. It might be public record. Ask.
I hope that you do not make decisions based on promises - as situations change and a person / family member does the best they can in the moment.
It sounds like you might be taking on more than you can handle, both physically, emotionally, and psychologically. Perhaps flushing out your reasons / reasoning with a therapist or social worker could help you make a clear(er) decision, which is ALSO in your best interest.
Are you prepared to provide 24/7 care for her in your home?
This could run in the $10,000s
Did you contact an attorney to actually know what you can and cannot do legally re housing / building addition, etc? I would start there if this is what you really want to do. Another thought is renting a mobile home to keep on your property for her. Is this a possibility? Although I don't know if I'd want my grandmother by herself in a mobile home if I couldn't hear what might be going on. Depends on how arranged / set up (with cameras, audio, etc.)
It seems to me that a person with dementia needing 24/7 care would benefit 'more' from a variety of medical / care services offered in a facility environment - notwithstanding your experience; I do not discount that nor your concerns.
If she is there, you could also augment their care with your own caregiver who comes in regularly to check in on her. Perhaps you could install cameras in her room (I don't know if allowed in a facility / AL - worth asking).
* (If) when you visit facilities, talk to family members visiting their loved ones. Ask them if you could call them to discuss your concerns as you are considering 'this' facility for your grandmother. Or talk to them there if they are open to it.
The point is getting some references from people / families who actually have a loved one at the facility. The facility itself cannot give out this information although you should be able to find people when you visit to put your mind at ease, knowing that your grandmother would be well cared for, perhaps in addition to you hiring a caregiver / companion a few hours a day to ensure she is okay.
Let me know what you decide.
Gena / Touch Matters
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