Need help for living arrangements for parents

Debbie 1128

Hi, I am looking for help on finding alternate living arrangements for my elderly parents. My mother has late-stage Alzheimer's. My father's health has declined in recent years, but he hasn't wanted to move her to a facility because he promised her that he wouldn't do that. It has become too overwhelming for him, and he is finally open to options. I believe that they both need to move into a facility together. I do not believe that he will agree to have her moved without him. My sister and I want to find options and present them to him. I just really don't know where to start. I have done some internet searches, but it is all quite confusing. 

They cannot afford NH or MC on their own. They are on Medicare which I do not believe will cover alternate living situations. I am confused about Medicare and what they will or will not cover. Has anyone experienced this with their LOs? 

I know that there are different types of living facilities, my mom needs memory care, my dad is fairly self-sufficient but has diabetes, back and knee problems, and in the past two years he has had a heart attack and two surgeries. It is evident that he is also having some memory and cognitive decline. Does anyone know what type of facility I should be researching that can accommodate both of them?

Any help is appreciated. 

Thank you,

Debbie

Ed1937

Debbie, I'm sorry. Your profile does not state where you live. This would be helpful information, especially for Medicaid.

What I'm about to say, you should take with a grain of salt. It might work if they went into an assistive living arrangement. He is not ready for MC, and she likely would not do well living by herself in a different environment unless it was MC.. There may be facilities that offer both assistive living and MC in the same building, and I'm not sure if that would offer a chance for them to be together at times or not. 

Medicare will not pay for MC. It will pay for a SNF if needed, but only for a limited time.

Would he be open to have help come into the house? That could give him a breather, and possibly be enough for a while.

If your mother does need to go into MC, a CELA should be consulted. The first visit might be free of charge, but clarify that when making an appointment. Just to give you an example of costs, he made amendments to my trust, protected all of our assets he could, and gave me an education on Medicaid. Total charge was just over $1,000.00. But charges can vary drastically from one locality to another, and even from one attorney to another. But it is money well spent. You might think there is nothing to protect, but by the time they are through, they have protected much more than the cost is to have it done.

These are just some thoughts, and I'm sure you will get more.

May flowers

The MC my LO was at had three wings - IL, AL, and MC. We knew a few couples where one spouse lived in AL and the other in MC. They ate meals together and were able to take walks and participate in other activities together.

Debbie 1128

Thank you Ed. I live in Colorado, so do my parents.

Having someone come in is an option we have talked about. I don't really know if that's enough at this point, but it could be a place to start until we find the right place. Nights are very hard for my dad. Mom gets up and gets into things. She destroyed her eyeglasses one night. I am not an expert, although I'm sure she should be in MC.

Debbie 1128

May flowers, Thank you for your reply. I think that would be a good option. Sounds like my dad could be ok in IL for now and if his needs change he could move to AL. I assume that he would not qualify for financial assistance at this point.

MN Chickadee

Hello Debbie, it's true Medicare does not pay for long term care. Medicaid does, which varies by state. There is a process for spending down assets and applying and the rules vary by state. I would consult an elder law attorney in their state. The attorney can look at their particular situation and finances and advise how to best pay for their care preserve money if and when possible, and will know the Medicaid rules, when you might require it, and what it will cover in Colorado and how to move forward. There is usually an income and asset limit as well as a period they will look back (to prevent moving or gifting large sums to shield assets.) If someone makes a bit too much in income sometimes a trust can be arranged for the income to go into and Medicaid pays the difference in the bill. Each state varies in what Medicaid covers -sometimes some in home help, sometimes only a skilled nursing facility, sometimes memory care.  The names of these places also vary by location and even by company. Assisted living and memory care can mean different things so you have to evaluate carefully. In my area I know of some places you could land both parents together given what you have described. Some are licensed as assisted living, but not all AL would work. The ones that come to mind are continuing care complexes (look up continuing care retirement communities or CCRC.)  My mother was first in a stand alone memory care, not a ccrc. It would have worked for a married couple if the non-dementia spouse was willing to put up with living in a memory care (it would get old fast.) The units were set up as efficiency apartments, though most stuff in the kitchenette was disabled other than rare circumstances. The rooms were spacious enough for a couple and the staffing ratio and approach was dementia specific and a person could usually stay there until the end unless complicated medical needs required a skilled nursing home. Most stayed there until death. Mom's second facility was part of a large campus that could accommodate all levels of elderly people, from varying wings of care (IL, AL, MC, and SNF) to also keeping spouses together who had different needs. 

 An experienced elder law attorney will often know facilities well and be able to give some advice on which ones might be better suited for your situation. Also try your local chapter of the Alzheimers Association. Depending on where your dad's cognition is, you might end up moving them to separate rooms on the same campus. If mom is truly late stage she won't have long, and having dad in a place with the right supports and activities for his cognition will be helpful in the long run. No matter where she ends up you may want to get hospice involved. They can be a great help and will serve your family wherever she lives, home or facility. There are many hospice agencies, and it is covered by Medicare at no cost to you. 

harshedbuzz

Debbie-

That's a lot to consider.

Some random thoughts-

As per what MN Chick said, your first should be a CELA in your state to sort out 1) the rules for Medicaid in your state and 2) start Medicaid planning/qualifying should your mom be going into care.

Medicaid does not pay for care in a MCF in some states. In those places a PWD would need to qualify for a SNF bed in a semi-private room. In others, it will pay for a semi-private room in a MCF. Even if there isn't an opportunity to protect assets in a trust, there is the option for mom to go into a care facility and for dad to remain in their home (assuming they own) for his lifetime as a community spouse. On his death, Medicaid would be reimbursed for the cost of mom's care.

Bring in caregivers is the costliest way to provide care. And it comes with extra work for you or dad- hiring, vetting, making sure insurance is sufficient for liability, payroll and taxes, covering missed shifts, etc. You might be OK with an overnight aide to start and allow dad to get sleep while you work through other options. Where I live, pre-COVID costs for a 3rd shift aide was over $30/hr private pay contrasted with $7000/month for a MCF.

The other piece is that you need to have your dad evaluated. If you are seeing symptoms of a cognitive shift related to dementia, then you will need to be planning for that. If you are seeing anxiety and depression, treating that would be helpful. It's sadly common for both parties in a married couple to have dementia and one to go unrecognized because they aren't as far along, their symptoms look different or because you don't want to even consider that nightmare. However, impaired your mom is, married couples do tend to scaffold each other and with mom in care, you may find dad is more impaired than your suspected initially. The vascular issues that can cause heart attacks can also lead to vascular dementia; diabetes loads the dice as well. 

I find sometimes spouses of PWD need to be released from unrealistic promises made regarding placement before symptoms and care-needs really ramped up. Sometimes it helps to explain that you know you will lose your mom to dementia, but you don't want to lose dad as well. Sometimes pointing out the positives a MCF can offer- activities, socialization and the chance for him to be just her husband- does the trick. Sometimes bringing a trust family doc to advise him of the impact this is having on him might work. I got my mom to place dad by threatening to place him in the cheapest/first available SNF when his care killed her-- saying if she wanted to pick his MCF, she needed to act asap. (And I wasn't being dramatic-- mom neglected her own care and ended up losing her vision and driving privileges because dad's care consumed her even with my help and regular aides). 

In your situation, assuming there are assets to fund it, I would look at a CCRC (assuming you can find one that will accept both- some don't take people who have dementia at the time of admission because of their business model and if you dad is showing signs, he might not be accepted either). You could start your mom in the MC area and have dad in AL or Personal Care on the same campus. He would be able to spend time with her and they could have meals together. 

Another option would be to place her and allow him to live in his own home. This is what my mom chose. She enjoys having her own little house and being able to walk to the nearby downtown area for shopping and restaurants. TBH, a CCRC would have been easier and less worry for me, but she opted for homeownership. 

I would have the CELA meeting to sort out how you intend to fund care for mom and then search for options. You want to tour in person if possible and talk with staff (not just the sales agent showing you around) and other families. If she will be on Medicaid from Day 1, it automatically takes certain facilities out of the running. Don't tour these. If they can pay out-of-pocket for a few years, there will be more options; many nice places operate on a business model of self-pay for 2-3 years before converting to Medicaid at lower reimbursement rates. 

HB

jfkoc

Please get someone in for the night shift. Your father's health will be much better if he gets sleep.

I suggest you contact your local Hospices. That is where we found some of our best helpers.

towhee

I suggest you contact your local Area Agency On Aging. I think there are three in Colorado, they will be .gov or .org., specifically talk to the long term care ombudsman. These organizations offer a great deal of information on services and facilities available in their area, may have info about medicaid, and may offer grants for respite services or other short term care. Calling them is free and might be a good place to start.

You are right that there will be no financial assistance for IL. It is basically like living in an apartment with a cleaning person once a week and a dining facility in the building or a short distance away. Very few even offer medication management, and it would usually be extra. Your rent usually covers a certain number of meals but not all usually, also amenities, usually scheduled group activities. It can be expensive.

For an overview of medicaid that covers assisted living and memory care and some home based care you might look at www.caring.com/senior-living/assisted-living/colorado. This site is accurate for my state and is frequently mentioned on this forum. It seems that Colorado is a waiver state which usually means there is a waiting list. You might want to look into this soon. 

If your parents have any funds do not transfer them or spend anything except on their care until you talk to a good elder care attorney. When you apply for medicaid they will look back and if money has been moved you might be denied care for a period of time.

Debbie 1128

Wow, there is so much. I had done some research on in house care after my dad's most recent surgery as my sister and I both had covid and couldn't stay overnight with them. I have a couple contacts for that now but yes, expensive. I have since found a potential grant program for them if they qualify, which I would be shocked if they don't but there could be a wait list like someone said. Another family member was able to step in and stay overnight that first night home. 

I can see how the caregiver's dementia could get overlooked. My sister and I both see it. We all live in different cities so none of us can get there as frequently as we would like, but we do see the changes when with him. He is needing more and more help with making appointments and such. He is stubborn and will likely resist testing. It will need to be gently presented. 

It seems my next step will be to look into the .gov and .org sites mentioned and find a CELA to learn more about Medicare and get things started there.

I love all the ideas, help, and support.

Thanks!

CatsWithHandsAreTrouble

Debbie, here's a thought on your dad being stubborn on seeing if he too might have dementia. There is a thing called anosognosia, the inability to comprehend that something is wrong with one's self, which can come across as denial or stubbornness. Not saying he has that but be on the look out for it for him and your mom.

Also for getting him in for evaluation, you can try and spin it as "I don't think we have to worry but it would put me and sis at ease if you could humor us, dad." Or mention something like it's suggested to get one at his age to prevent complications in Medicare coverage.