My grandparents have been living with my parents for the past year, after we got them to finally sell their house. They are 92 and 90, both have Alzheimer's, and caring for them has become overwhelming for my mom. Incontinence is a major issue along with personal hygiene. We do not have the type of relationship with them where they'd allow us to help them shower or anything like that. We can't get my grandma to wear depends, and my grandpa doesn't wear his properly, and almost daily poop is getting on the floors and furniture. We know it's time for them to move to assisted living (possibly memory care), but they are not open to it at all, nor is it possible to have a rational conversation with them. It just results in them planning an escape back to Illinois (we're in Georgia). This whole situation feels nearly impossible. Plus, we don't even know how they can afford assisted living.. so far what we've looked at it is way out of their budget. We don't even fully understand their insurance/Medicare situation, but I know for sure that they didn't pay into any long-term care. I am in the process of figuring all this out, and I'm just hoping someone on here - maybe another person in GA - can point us toward some resources. I'm wondering if we need to find a social worker or someone that can help us through this, as it is such a high stress emotional situation for everyone involved. TIA!

This is definitely hitting close to home with my Dad. Do talk to an Elder Law lawyer. They know what directions to steer you in, and can help with any Medicaid applications, etc. Even though there are not any easy answers, and I feel super guilty about a lot this like some folks have mentioned, I did feel better after talking to the lawyer. (Who ever says that??) But I'm coming to grips with the fact that there isn't any rationalizing with them. Get the nuts and bolts of what needs to be done in place, so you will at least have the structure to go by for the rest of the decision making. (My heart goes out to both you and your folks!)
Helpful Answer (1)
Reply to dec104

The first priority for your grand parents is their safety - and the health and safety of your parents. Caregiving is grueling when there is only one person being cared for - I can't even imagine having 2.

If your grandparents sold their home, then they have some resources. Of course this will not last long in an AL/MC or SNC. And most AL/MC facilities do not take medicaid - though there is one AL facility in my area that does take maedicaid - but they require the resident/s self pay for the first year.

If this hasn't been done have their docs or the Area Council of Aging (it may be called something else in your area) have a needs assessment of your GPs - if they are considered competent it may be hard to make them move out of your parents' home. I do hope one of your parent's have POAs for financial and medical for each GP to enable them to act on the GPs' behalf.

Medicaid requires a ton of financial information plus other information and even if your parents use an elder/medicaid attorney (paid for by GPs) getting the information will fall on your parents - or you - I worked my butt off getting the paperwork together for the attorneys when my father had to go on medicaid.

For the short-term - until GPs are moved - your parents need to hire in-home aids to assist them - paid by your GPs. Maybe 2 or 3 days a week to give parents respite from the unrelenting work.

And finally don't try and explain to GPs, they are probably beyond understanding. Learn to visit their alternative universe. Depending on how long they remember things you might tell then you take them to IL next week - HOWEVER, if they do remember then there will be big trouble. Learn to distract then to another direction. I'm not sure I'd talk to them about moving to a facility. Make the plans and tell them the day of the move. It sounds kind of mean - but all this talk of moving just increases the agitation. Unfortunately correcting them doesn't work well either - cause they won't remember for the next time. Their brains are broken and there is no fix - unfortunately they will only get worse.

Hope this helps.
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Reply to cweissp

Sometimes you just have to place family members where they are “safest.” That might be a nursing home. They are obviously declining and will continue to require more and more care. You have received some good direction here. My heart goes out to you and your family.
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Reply to Sunnydayze

EmNichole, Surprisingly some people will do things that a caregiver or "outsider" has them do that they will not do for family. It might be a deep seated idea that they don't want their son, daughter, grandchild to see them naked or to have to do personal tasks.
On the other hand some are resistant to any help at all.
But with dementia they have lost the option to make personal choices.
Often as the person declines they become less resistant, or they get used to the extra people.
You might want to check to see if either or both are eligible for Hospice.
Hospice does not mean that they have 6 months or less what it does mean is that their lives have been effected by a disease that will shorten their life and that there is no cure.
But you will get help by the way of a Nurse that will come in every week. A CNA that will come at least 2 times a week to bathe and order supplies.
And you will get the supplies and equipment that you need.
And a Social Worker that might just be able to find a facility that will take them knowing they are on Hospice so logic follows that they will not be long term residents. (I know sounds crass to say that)
ALSO another benefit with Hospice is that Medicare will pay for almost 1 week of Respite so you can get a break, or mom can.
Also if either of your grandparents are Veterans check with the Veterans Assistance Commission in your area and find out if either or both are entitled to any benefits. Might be a little, might be a lot!

Oh, if you do check Hospice. There are 2 basic types a FOR profit and NOT for profit. The one I used was NOT for profit and I do think that makes a difference.
Interview a few just like you would any other service or medical professional.
And if they do not qualify there is always Palliative Care and they can be of help as well.
Helpful Answer (1)
Reply to Grandma1954
cweissp Jun 16, 2021
Very good information - I always forget about the Aid and Attendance Benefits through VA.

I also agree about Hospice - when dad needed Hospice we used an not-for-for-profit Hospice, they were wonderful.
First. Both with dementia they do not belong in AL but Memory Care would be a better choice.
Whatever funds they got from the sale of their house should be used to pay for MC for as long as possible.
If the money from the sale was not used for their care it will probably have to be paid back.
Second. Both with dementia they should not let me repeat that, THEY SHOULD NOT have a say in if they are going to shower, how to properly wear incontinence products, having help in the bathroom, having help getting clean after toileting. It is time to bring in caregivers that will help care for them if family can not or will not do what needs to be done in order to maintain a clean and safe environment.
You remove all "regular" underwear form dresser drawers. And you just start monitoring bathroom time and helping when it is necessary.
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Reply to Grandma1954
EmNichole Jun 16, 2021
Thank you for the advice!

Whenver my mom tries to monitor or regulate my grandma in any way, my grandma gets a nasty attitude. She throws a tantrum when my mom tries to get her to wear depends. Do you have any advice on how to deal with that when it happens?

What if we hire a caregiver and my grandparents are completely resistant to the help??
You stated that you finally got them to sell their house. You also stated they are unwilling and unable to afford. Make sure you choose a facility that will take them as private pay, then you can apply for medicaid, as they become eligible.
Obviously I do not know what their house netted, but hopefully it will be at least enough for a year, while you go through the process. The financial issue is challenging, but the emotional issue is even more difficult to deal with. They won't be happy, but do what you need to do. Sad to say, but it will not get better and you cannot live with 2 incontinent people. Best of Luck.
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Reply to lsmiami

Medicare is a health insurance that goes into effect at 65. There is A that is free but B is paid for from their SS checks. Check their statement they get about January that shows the increase for the new year and any deductions taken from there SS checks. You can go online and find out what A&B cover. Medicare only pays 80% of what they consider reasonable. You need a suppliment to pick up the other 20%. (With my insurance there is a "share clause" so I pay part of that 20%)

IMO, your grandparents are passed an Assisted Living maybe even MC. They don't have the staff to constantly clean up after them. They need too much care. So your choice would be a Nursing Home, Skilled Nursing facility, Longterm Care, whatever its called in your neck of the woods. If they have money from the sale of their home, then that needs to be used for their care in a facility. When that starts to run out, you apply for Medicaid.

Call your County Office of Aging and see if they have someone you can talk to.
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Reply to JoAnn29
EmNichole Jun 16, 2021
We did actually tour a memory care facility and it seems like that place would have taken them, but you're probably right about the nursing home. I appreciate the explanation about the insurance/medicare/medicaid!! I'm going to look at their statements and take it from there. Thank you!
It may help YOU and the other members of your family if you rearrange YOUR thinking about what’s happening right now to this couple.

You have said “..nor is it possible to have a rational conversation with them”.

Aren’t you expecting “rational conversation” when you also say “…they don’t want to go”?

There is no reason for you to expect them to want to go. NO ONE “wants to go”, but if they can’t take care of themselves, the most loving and rational decision to be made FOR THEM is to place them in a residential setting where they can be taken care of and protected.

Today, contact the nearest Medicaid office you can find listed online, and start with what you need to get them qualified for Medicaid (if possible). If you can GO to the office you may be able to get more specific information than if you start with a phone call. The resources from the sale of their house will be expected to fund part of their ongoing care.

Providing APPROPRIATE CARE does NOT make you “the bad guys”, except to people suffering from the trials of dementia.

All of us here have had painful and difficult experiences when trying to doTHE BEST for people whom they love.

Sometimes, “the best” doesn’t make anyone very happy, but then you have to deal with making a choice from the not so best choices.

You can also Google “Memory Care Facilities” today, and see if there are any near you.

Remember- this is as hard as it gets, but NO ONE who acts with love and compassion is a “bad guy”.

We care.
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Reply to AnnReid
EmNichole Jun 16, 2021
You are so right.. we just wish they'd see even just a glimpse of reason so it wouldn't have to be forced on them, but yep, it's just wishful thinking. I know I wouldn't want to go either if I were them. I'm just so worried about my mom's mental and physical health with all of this stress.

We toured a memory care facility last week, and my grandparents were NOT happy about it, even though we talked to them about it and initially they seemed into the idea of a "senior community" as we put it to them. But as soon as we walked in the doors it was "oh so your mom's trying to get rid of us, huh?" We know in our minds that we are doing what is right, it's just their attitudes that make it so difficult, and it doesn't sit right in our hearts. You are completely right, though.. we cannot blame them for feeling the way they do, and we cannot blame ourselves for needing to do the right thing. Thank you for your instructions with the medicaid office. I am going to do that. I really appreciate your response!
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Perfect answer! For free advice call the helpline 1-800-272-3900 at the Alzheimer's Assn. They can get you to resources in your area.
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Reply to JG23601

You have your work cut out for you. Just take a deep breath. First, who has Power of attorney and Medical power of attorney over grandparents? These documents are needed to make financial and medical decisions for your grandparents. If these documents aren’t already in existence then you have a problem as grandparents have dementia at present. Then you may be looking at having to get guardianship which involves lawyers/money. Is your mom the only child? Does she have “helpful” siblings she can turn to? Contacting your states dept. on aging could help you get in touch with a social worker. Getting placement for them with limited finances will be tricky. As far as them making an “escape”, how would they even do that? Surely they aren’t still driving and if so please disable that vehicle. You aren’t going to be able to reason with them due to the dementia. See what insurance they have, Medicare or Medicaid. Contact them and tell them u need a caseworker and explain the situation ASAP. This isn’t going to get any easier so get on the phone. This is a very stressful situation for everyone. The first step is realizing your family can’t continue in this way. It is unhealthy for everyone. This is a good site to come to , I am sure someone can give u a better answer than I can. Keep us updated. This site is also a great place to ventilate. You are not alone in this kind of situation.
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Reply to Violet2021
EmNichole Jun 16, 2021
Hey there! So my mom just got power of attorney a couple of weeks ago - I believe medical and financial. But even with that, she needs to get guardianship in order to actually move them into a facility? My aunt lives across the country, and is somewhat estranged from them. She has been looking up assisted living communities and has been in touch with my grandparents' financial advisor about their money situation. At the end of the day, though, she's not here to help.

They have no way of escaping.. I only brought it up because they're often trying to figure out how to get back to illinois. We honestly don't know how to deal with it or how to respond when they start talking about it. They can't drive or anything and wouldn't try, but my grandpa is trying to call people he knows in Illinois. At times he really thinks they can live on their own (which I know is normal for people with dimensia).

I've definitely realized we can't continue this way. My parents are beyond frustrated with them and just aren't equipped to deal with the dimensia. My mom still tries to reason with them on a daily basis, and my dad often tries to correct them when they leave a door open or don't clean up their messes. I've tried explaining to my parents many times that they are not going to learn to do better, they have dimensia and it only will get worse.

I am so glad to have found this site so that I can vent as well as get advice. I am going to look in to the insurance and follow up with the state dept (I did email them and they told us we needed to get an official diagnosis before moving forward, which we did). Thank you for your thoughtful response!
First of all the situation with your grandparents living in the home with you and your parents seems nearly impossible because it is. If they are both incontinent and unable to hold a rational conversation then they need professional caregivers to meet their needs. An assisted living community will not take them. The level of care they need at this point is beyond what an AL community can provide.
They need placement in a nursing home/memory care facility.
What will happen is their bill in a NH or MC will be cash pay at first. Unfortunately, there are no 'resources' available that will pay for care if there are cash assets or property. Your grandparents have cash assets because their home has been sold. A care facility will take whatever their monthly income is (social security, pensions, annuity dividends, etc...) as well. After all the proceeds from their house and any other assets are spent down, Medicaid will start paying for them.
The facility they get placed in takes care of getting them on Medicaid.
This is what's going to happen whether you involve a social worker or not. They will make all kinds of promises of help and resources being available to keep them at home. Nothing ever comes of it. When the situation is at the point where there's crap and piss on the furniture, refusal of basic hygiene, and they've lost ability to hold even a partially coherent conversation, it's time for a nursing home.
There's no easy way to do it. Your grandparents from what you say will not go willingly. They have to be forced. Which is find a care facility and make the arrangements. Tell the facility your grandparents will be a 'Hostile Transfer'. They can help with the transportation for them.
Helpful Answer (7)
Reply to BurntCaregiver
JG23601 Jun 16, 2021
Your replies are done with a lot of care and concern. Thank you!
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