It just doesn't matter

Ed1937

So your next door neighbor cared for their spouse for 20 years. You've made friends on the forum. Some of them have been doing it for more than 10 years. You have only been doing it for a year and a half, and it's hard...hard....hard. But you can't place your LO because that will mean you're weak, and you don't love your LO enough. Not only that, but your other neighbors will look at you as being something less than upstanding. NONE OF THIS MATTERS!! If you're at the end of your rope, consider placement. So you promised your LO that you would never place them? That was a mistake. But it's not the first mistake you've ever made. You're human.

I placed my wife a week ago. She was easy to care for for a long time, then it changed. I had help, but it was still no way for any of us to live. I've only been doing this for a little over 4 years. I don't cry easily. But I placed her, then I cried. Then I cried some more. In December we will be married for 65 years. I love her very much. She is my best friend, and the mother of my children. It's a different kind of hard. Our house does not feel like home. It feels like a roof over my head. I still get teary.

The second paragraph matters. The first paragraph? IT JUST DOESN'T MATTER! Don't be afraid to do what needs to be done.

Kenzie56

Thank you, Ed!

Jo C.

With deepest thanks.

J.

Bill_2001

Ed,

Thank you for your very thoughtful post. I would consider placement sooner (been doing this for 6 1/2 years), but I just cannot see any way out of the financial disaster that would cause.

If you have five figures saved, go for it. Medicaid may help. If you have seven figures saved, go for it. You can probably pay for placement for years and still have some semblance of a retirement at the end. And if you have long term care insurance, you are more than blessed. (My wife could never qualify for it.) Sucks to be us.

It's those folks that have six figures saved for retirement that are up a creek. Medicaid requires us to spend most of it before they help. The irony is that it would have been enough to retire on (modestly), but most likely not after paying for placement. It is a quandary that many of us face. The longer I postpone placement, the shorter it will be; in theory there may be just enough left for a modest retirement. This is the only plan I have now, and my whole life is held together by one bolt.

This is the problem I am facing. I am still young - late 50s. I haven't lived long enough yet to have saved seven figures, but I will most likely outlive my dear wife. This disease knows just when to strike: When you have too much saved to qualify for Medicaid, but not enough to pay for an unknown length of time in placement.

Congratulations to those of you that, by some miracle, managed to avoid this dilemma. 

JoseyWales

Yep, it doesn't matter what others will think. I worried more about what people would think of WHERE I placed him. Doesn't matter - almost no one goes to visit him anyway. I never promised him I'd take care of him to the end, and that's a good thing because even now, after I've caught up on sleep and am beginning my life again, I know I couldn't go back to taking care of him. It's not a weakness, it was just an impossible task for one person. Even with help. I'm still there for him, it's just that there's now a team that helps and I can get a good night's sleep. 

Just today I talked with my lawyer and it seems that Medicaid has finally gone through to take care of the bills that have been piling up.  Bill - Do consult a couple of lawyers about Medicaid if you haven't already. The first one I talked to would have required spend-down and it did sound overwhelming. And would have taken 1/2 our retirement savings and I would have spent it on stupid things I really didn't need. Our retirement savings wasn't huge, but not tiny either. Normal middle class savings. And all in DHs name. I went back to work almost 10 years ago, when I knew I needed a job because it looked like DH would not be able to continue with his. And at that time, at age 44 with a child in middle school, we needed insurance and stability. Long story to say, the second lawyer I found was able to protect ALL our retirement savings, with no spend down. His plan REQUIRED a lawyer, and was nothing that I've ever heard anyone else talk about doing. But it worked, and I have an intact retirement. Of course I still need to work for the next 10 years for insurance, but since I'm only 54 that's normal!

Sligo177

Ed,

Thank you for that post, it helps me a lot, and with you in the midst of your troubles, it's so thoughtful of you to share with all of us.  I often think, "I can do this" one day, and the next I don't know how long I can...and so it goes.  You have always put your LO first, and continue by getting her round the clock care.  God bless you.  Please find peace today and something to make you smile!

Jo C.

Josey; I am in throes of curiosity - what did that second attorney do to set your estate in place so as not to sustain major losses of your savings?  The only thing I have ever known was to do a non-revocable Trust but that meant other issues for us.

J.

jfkoc

So hard....all of it.

I did  take care of my husband at home  until he died but had a Plan B at the ready. It was possible but all to often the day can come when placement is the best option for the caregiver and the PWD. That is all it boils down to...the best option out of a list of  lousy options.

I know the emptiness that came when my husband died. It was devastating but I think the "limbo" of placement might be harder. 

Bill_2001

Not to get into too much detail, but I have already made plans with an elder law attorney.

Missouri is quite stingey with its Medicaid rules. Short version - a Trust was not a good fit for our situation.

Missouri requires us to pool our marital resources and split them down the middle. My dear wife then uses up her savings in placement. Her SS and (small) pension help make these savings last a bit longer.

Once she is broke, the state requires me to use my savings and retirement until I am down to about 130K. Her SS and (small) pension continue to go to placement costs. Then they begin paying the difference.

But wait! Next the state keeps track of how much they are paying and place a lien on my home. I can continue to live here. Remember, I am at a critical retirement planning age myself (late 50s). One heck of a crappy time to wind down my retirement savings and end up with another mortgage. Ugh.

So after the love of my life passes away, I am left with none of her savings, 130K of my savings, a home with a big lien on it, and a small pension and SS of my own. Her pension and SS end after she passes away.

After a lifetime of scrimping and saving, I am doing my best to avoid the above scenario as long as possible. I do understand what Missouri is doing and why, so I am not blaming the state at all. If I can just keep working and keeping my sweetie here with me (and daycare) as long as I can, I just might be able to salvage my own retirement someday.

PS - My late mother was disabled and on Missouri Medicaid for a number of years. The continuous barrage of letters, forms, applications, and investigations was enough to put me off of considering Medicaid for life. It's somewhat personal - I really just don't want the state in my life.

Ed1937

Bill_2001 wrote:

I would consider placement sooner (been doing this for 6 1/2 years), but I just cannot see any way out of the financial disaster that would cause.

Bill, I agree with Josey. When you find an elder law attorney, I'd suggest that you find one who is certified. A CELA is required to stay on top of things, more than a regular elder law attorney. That is not to say that a regular elder law attorney isn't good, just that they might not have the expertise a certified elder law attorney will provide. Apparently Josie was not completely sold on the first attorney she visited, so she saw another one. The first visit will likely be free of charge, so there's no reason not to see one to find out what they can do for you. Please don't think you will be destitute when you go on medicaid.

JoseyWales

Jo C. - In my state - Indiana - I'm allowed to keep a total of $25,000 of cash (bank accounts) and other assets (excluding 1 vehicle and home). I can also keep the entire value of all retirement investments that are in my name alone. But almost all of our investments were in DH's name. The lawyer knew a way to transfer DH's retirement accounts into just my name, without having to pay any taxes like you would if withdrawing it for spenddown. Just a transfer like you would do rolling over an account from an old employer, with no costs involved.  It involved a legal separation (which was withdrawn later), signing off by his secondary POA and some other legal moves. All of it was done legally, and even the legal separation spelled out the reason for the separation was to transfer funds, so we weren't scamming the court. It must be something that's done occasionally, because the financial advisor I work with understood what we were doing. 

(Sorry to hijack your thread, Ed!)

JoseyWales

Bill - Missouri's rules sound horrible. You could easily have a lien on your house by the end of placement that is more than the 130k in retirement.  As if this disease wasn't cruel enough, it bankrupts so many of us.

JoseyWales

I should think before I hit post, because it seems that I have so much to say.

Ed's right - the first attorney I saw and worked with for almost 5 years would have had me do spend down and, honestly, gave me a little bit of bad information. I don't think it was all her fault, it's just that qualifying for Medicaid isn't ALL she does. I had no idea there was any other way of doing things until I was ready to place DH, and the financial person at the facility suggested I talk to someone else. That time I chose to talk to someone who almost exclusively works with families trying to qualify for Medicaid and other forms of estate planning that are a bit touchy. He's the best in the area, and I paid for that. But in the long run I saved more than I spent.

Ed1937

JoseyWales wrote:

(Sorry to hijack your thread, Ed!)

It's all good info for people. No apologies required.

Gig Harbor

That is an interesting idea to transfer ownership of an IRA from one spouse to another due to divorce or legal separation. Would it still hold if the separation request is withdrawn? I wonder why everyone doesn’t do this.

JoseyWales

Once the retirement account was transferred, the separation request was withdrawn. I'm back to married. I have no idea how it works, legally. Similar to a divorce where the spouse gets a portion of retirement savings? I honestly have no idea. I just know it was legal and the lawyer I'm using said he came up with this idea years ago. No one else I ever talked to has heard of it.

Rescue mom

Just a reminder  that different states can/often have different rules and regs. regarding Medicaid….but private pay MC for just under $6k a month? Wow…that would be amazing down here in FL. And, no, most MCs don’t take Medicaid here either, or none that anybody seems to know of.  (Sure as I say they all don’t, somebody will find one somewhere in the swamps )

Just as an aside, there’s been some reports recently about the huge waiting lists for Medicaid facilities and dementia  housing help/care  in FL. So many, even ALs, will not take Medicaid at all. They’re all private pay, or long-term care insurance. 

Bill_2001

Thanks Rescue Mom, very helpful post!

So basically, in some cases, even going through the trouble of jumping through Medicaid's hoops ends up being a moot point. If no one takes it, or there is a century-long waiting list, what's the point? By the time we wait that long, we will have saved up more money LOL.

The whole thing would be laughable if not for the heartbreak of it all. My wife stays home with me and stays in daycare while I work. This is a workable setup for now. I just hope the good Lord keeps it do-able until the end.

[Said through tears] I just want her home with me, not in some Medicaid nursing home. As miserable as caregiving is, I just don't have the personality to handle that. There is a nice private-pay MC up the street, and that is my contingency plan. Expensive, but with her SS and small pension, I should be able to stretch our savings if I have more time to sock more $$ away.

Take that, Medicaid! (BAM!)

Ed1937

Bill, just because it's Medicaid funded doesn't mean they have filthy, rat infested facilities. We are currently applying for Medicaid, and my wife is in a very nice place. Everyone working there is super nice, and the only complaint I have is that communications could be a little better. It takes persistence, but it can be accomplished. I know of three people who are now there. The families all give it a big thumbs up.

Rescue mom

Bill, there are Medicaid places that I would live in myself, if need be, and have no problem placing DH there (if qualifies).  They are nice, and clean, etc. Medicaid does not mean they’re undesirable.

There are just relatively few that take Medicaid  in S. FL. There’s  a lot more in another southeastern state where I have a lot of family—several of whom stay or  stayed in Medicaid facilities that were excellent.

My real point is that things can vary enormously from place to place, state to state. What works to get  Medicaid in one place, may not work elsewhere. 

And, there is a lot of evidence that the need for affordable dementia facilities already outstrips the supply—especially in FL with its huge waiting lists for Medicaid facilities—-and expected to get worse as elder population grows.

Ed1937

This is the facility she is in. Most of the pics are AL pics, but a few are MC rooms. The rooms are about 11' 9" X 13' 6". They have their own bathroom and shower, as well as a closet.Some of the pics show community rooms for different uses. https://townecentreliving.com/your-lifestyle  

White Crane

First of all, thank you, Ed for your post.  It touched my heart.  I like to think that what others think of me doesn't matter but if I'm honest, it does.  Thank you for the reminder that I my main concern needs to be what is best for my husband and for myself.  And although my DH is still at home, I can understand how lonely your house feels.  It will be the same for me if and when I need to place him. 

Secondly, Bill, I live in Missouri also and have talked to two elderlaw attorneys.  You are right about Missouri dividing down the middle.  The second attorney I talked to said our home and car were exempt.  She also said if we have a burial plan, which we do, I would need to make it irrevocable in order for it to be exempt.  I am looking into that.

There is one other thing that was mentioned; that is a Medicaid Marital Compliant Annuity.  I don't fully understand it but the first attorney said all our assets could be put into this annuity at the time of placement and it would protect them from being depleted..  He also told me the community spouse allowance, which would refer to me, would be allowed $2150 per month.

There did seem to be a catch, however.  If the souse in MC died first, Medicaid could come back and collect money that was spent on them while in MC.  I'm afraid I'm really not explaining this too well so maybe Crush could straighten it out.  I just wanted you to know what I was told.

Brenda

Rescue mom

What I seriously think/worry  about are the people in their 30s-40s, even 50s like Bill. How will they afford housing/facilities for dementia care? Hopefully, they’re saving money—but given the soaring costs of food, rent/housing, gasoline, child care, etc. —I don’t see how they can save much. And more dementia expected as elder population grows.

Bill, I am envious of the day care you’ve mentioned. We have little of that, either, and also with long wait lists, regardless of Medicaid. The lack of services for dementia seniors in FL, unless you’re extremely wealthy, is something few think about.

Bill_2001

White Crane, you are explaining it very well. The community spouse allowance is also correct, and a joke. I have not scrimped and saved my whole life to end up trying to live on 2k a month. I don't need the state to help me go broke. And they will slap a lien on the house you counted on having paid off in retirement. They keep track of every dime they spend on your loved one's care. I get it - but Missouri's "help" is more like a loan.

And to all the others, I never said that Medicaid nursing homes were undesirable. (Read my post again.) I said that if there are no facilities that take Medicaid available, then the point is moot. I also said the same thing if there is a very long wait.

The Medicaid facilities could be the Ritz-Carlton, but if we have to wait forever and I have to go broke anyway before they help us, again, the point is moot.

I can save up and choose a private-pay place without the state's so-called "help."

Bill_2001

Hi Rescue Mom,

The daycare is a godsend, and maybe you will find one or a new one will open up. I could not continue to work without it, or without placement.

The daycare is not perfect; they call me each time my dear wife has the sniffles or has a minor bathroom accident. Sometimes I have to leave work and take her home. They are very mindful, but since the pandemic, border on paranoid.

But it is still a godsend. I live for my vacation days from work. I take her to daycare and have a full day to myself to get things done. I have never appreciated 8 hours so much in my life. 

I just hope this setup works for a while, and I take it all one day at a time.

Stuck in the middle

Ed, you are so right.  My neighbors aren't thinking about me.  They have their own problems.  The woman next door has Parkinson's and the woman across the street has a parent with AD.  A man up the hill has AD, and several have heart disease.  They might ask about my wife when they see me walking without her (she's at home with her feet up as usual) but they are just making small talk.  

And who cares if they did think about me?  I was taught that the person who was doing a job did it the way he thought best.  If you aren't paying me to do a job, and you aren't helping me do a job, how I do it is none of your business.  

BTW Ed, I love the place your wife is staying.  I was 25 years old before I lived in anything nearly so nice.  You are doing a great job for your wife (not that my opinion matters.)  Thank you for the encouragement. 

Rescue mom

Just related to some of what’s said above: I met with attorneys and financial advisors late Friday re our financial arrangements and future.

Medicaid for my DH came up, which led to the attorneys and money guys talking about how Medicaid rules and regs, in other states, are changing big and fast. A lot of trusts, and other financial things you can do to protect a spouse, are OK in one place, but not another. Or may be ok with “tweaks.” . But all very different, and changing fast. 

I’m in FL, and so are those experts, but they also have clients who live in 2 states, and said they need dedicated staff just to keep up with other states’ policies.

.Florida is relatively easy, they joked (yeah, big joke), because all FL does is reduce ways to get Medicaid (make it harder to get).

Anyway, TMI, sorry, it was just so much about different Medicaid policies in different states.

fayth

I am in Wisconsin and my dh has been in MC/AL for 3 months.  He is in late stage.  I had the help of an excellent attorney who specializes in preparing for Medicaid, which is paying some of the costs.  DHs pension and ss pays for the rest.  Most of our middle class retirement savings were in DHs name (which was a mistake).  But the atty set things up so I am paid an annuity, with my name on the checks, from DHs retirement accounts.  There will be a lien on the house, but if I sell it in my lifetime the lien goes away.   This has been a fiancial lifesaver for me.  I agree it is important to look around for a good attorney.   She was the 3rd one I interviewed and came with excellent recommendations.