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My husband diagnosed in 2021 after years of weirdness and making horrible decisions- one which sent our business into Chapter 7. I handled it all as he was apathetic and said “oh my I really screwed up”. Ugh! I also worked full time while he didn’t do much so I handled everything. I asked his doctor if he could get a brain scan and OMG did that show it all! FTD with PPA. However, he did a ton of work around the house and fixed everything. Then, he just couldn’t do squat. He barely knows how to use a toothbrush anymore. I’m appalled and heartbroken watching this man decline.
I jumped on the future plans right after diagnosis and found out skilled care will be $15,000/month! So, I’m trying to hang in there with him going to Adult Day program a day a week (very expensive). I have an Elder Law attorney who is fabulous and she said to stay in my home and let whatever facility I choose run the money out to apply for Medicaid and after he’d be approved, I’ll at least have some money from the sale of my house to live. I just turned 70 - he is 75. His mother is 100 and lives independently in a retirement village and I have her demands, too!
I have 2 wonderful sons, but, I am on East Coast and they’re in California. They’re trying to come up with a solution and always lend shoulders to cry on and fly here as much as they can afford. Sometimes I feel like I’m the one who’s going to go first! MIL is in perfect health! My husband is docile and I can handle him now, but, this is progressing so rapidly now that I can’t keep up with the gut-wrenching changes. I just don’t know how much longer I can keep this going.
I’ve read so many comments on this place and is such a great forum. Hopefully, I can get some good advice or just be a sounding board.

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I would also consider consulting with a Medicaid Planner for your state of residence. Where I live, Medicaid only covers LTC and not AL or MC. LTC is a medical assessment made by a doctor (and is usually for people who are permanently bedbound or profoundly ill). Then you will also need to qualify financially. In most states, the lookback period on the financial application is 5 years (in a few states it is 2.5 yrs) so how you manage his finances will be very important.

You can also consider a companion aid for him. My 2 Aunts shared 1 companion aid for 6 years and they loved her to pieces (so did I). Found her through an agency.

I'm so sorry you both are going through this. May you receive peace in your heart on this journey!
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Katybr Nov 8, 2023
Yes, my attorney is a Medicaid planner and I know all the rules in my state of PA. 5 year look back here and all the other rules and regulations I have in a file. They only pay skilled care and no AL. My husband was already approved in May for skilled care - no AL as he’s too dependent so his 2 doctors already wrote the order for him to be admitted and was accepted by my 1st choice. I’m just not 100% ready yet. Also, my attorney is also transferring large sums into Medicaid approved annuities and there’s only a few attorneys in my state that do it. That will protect some assets I inherited. It’s such a sad situation- you work your whole life and it goes seemingly overnight to care.

Peace in my heart is my goal. Thanks so much for your kind words.
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FTD is a game changer, my stepmother has it. She no longer can write and communicates very little.

We have her in MC, costing her $4,800 a month, she is in a very nice facility and is well cared for.

Vent away, keep posting it will help!

Sending support your way!
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Katybr Nov 8, 2023
Thank you MeDolly. ❤️
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Your Elder Attorney should be telling you how to split you assets. Husbands split going to his care and before it runs out you start the Medicaid application. You do not need to lose your home. If u sell the home, half the proceeds are his too. Your husbands SS and pension may all go to his care since you work.

You do not have to be bedbound to go to LTC. You need to be 24/7 care. My Mom only took B/P meds when I placed her. She scooted around in her wheelchair. Wheelchair only because a Fall risk. She was in the NH because she had Dementia.
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Katybr Nov 8, 2023
Hi JoAnn - I live in PA and there is no such thing as “splitting assets”. It all goes into one pot when you’re married. Everyone tells me to do that - believe me, that’s the reason I got an Elder Law attorney so we could split assets. You can’t do it here nor anywhere (almost) IF you’re going to ask the government for help - Medicaid. So, I get the house ($750,000), one car (he hasn’t driven in 3 years), and have to spend down all investments to $148,000. Every year that amount goes up a few grand. Whoopee doo….
If I sell the house, the proceeds will go to “us” and I lose all that money for MY future. So, I found a wonderful skilled care facility and they only want one year’s worth of care for $189,000 and then I can apply for Medicaid. They don’t want to destroy my financial life - they said they’re very aware of FTD and it doesn’t last long once admitted in the final stage. Most places I visited keep saying “Alzheimer’s can go for years!” NO! He does NOT have Alzheimer’s- he has FTD. Ugh! Soooo frustrating and these people are in charge of admission into skilled care! It’s what Bruce Willis has and they were diagnosed a year apart. I use that as an example when telling people and they go “ohhhh yes, now I know”. It took a celebrity to bring this to the attention of the world!
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You are really informed and intelligent and you have done it all right. You have got the diagnostics and you are giving the care and you are getting the expert advice.
It's a matter of how long you can go on with in home care. I doubt it can be much longer without taking a terrible toll of your own life.

I actually trust you completely to make the right decisions here for your own life. I am so very sorry. This has gone well as it could for your poor hubby and much of that is due to YOU. I congratulate you and you have my best wishes and I hope you'll update us. You have my admiration. Feels to me I have been here all a.m. whipping everyone raw, and I am so glad to see someone who is doing it right, and is using love and intelligence in a great blend.
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Katybr Nov 8, 2023
Thank you so much for the compliment Alvadeer. I’m doing ok - today was a good day - others not so much. I guess because he went to his Adult Day program. It gives me a break. His mother doesn’t bother me for much, but, the retirement home does! They call me if she stubs her toe! Seriously! She’s getting detached from her son and it hurts me to see that.
My husband lost his brother 5 years ago to a sudden heart attack and his wife (our SIL) has Parkinson’s so my niece has her own plate full. We talk a lot so that helps. It helps to talk to other full time caregivers and compare notes.
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Katybr I am in the exact same situation that you are and I also live in Pennsylvania (the Hershey area) and you are correct in everything that you said. My husband has FTD/PPA (Primary Progressive Aphasia) and I have to explain this to everyone the same way - "This is the same diagnosis that Bruce Willis has..." and they all say "Oh, I see..." but honestly nobody understands what I am going through. My children do not live nearby (one out of state). And I am dealing with the gut-wrenching changes in my husband too. It is lonely and difficult and I am in total fear of how I am going to pay for his long-term care. I do have an elder-care attorney who had guided me, but I am still afraid on how this is all going to end. I feel for you as I can totally relate.
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Katybr Nov 26, 2023
Capecodgirl, we need to exchange emails. I live in Lancaster! My husband has PPA/FTD. He does NOT have the bvFTD (which is the behavioral variant). That is the one where they get aggressive and violent. He sleeps all the time or watches CNN all day half sleeping. He’s had 5 brain scans now and a PET scan to really “delve in there” and see if he may have Parkinson’s, too, but does not. He has “Parkinsonian” symptoms- tremor is horrible. His legs are getting stiff and that’s a bad sign.
I have him already accepted into a long term care facility when I’m ready. They only want a year ($189,000) for Skilled and will accept Medicaid if he lives long enough. The symptoms are heart-wrenching- some days I just pray and ask for the end. He is like a zombie sometimes and other times a bit of a smile may come to his face. It’s the worst of the worst. I watched a 60 Minutes episode on FTD and the expert said “it is the worst thing that happens to humanity - it robs the essence of our soul.”

And all the videos on YouTube say how lonely it is for us. Amen to that. He’s sitting here with me in the same room, but, I’d rather be alone because there’s no talking and I just want a yes or no answer. I could go on………
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If MIL is in perfect health then step back from her care.
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Katybr Nov 8, 2023
Well, I don’t care for her - the retirement home does. Believe it or not she’s in Independent Living! If anything would happen there’s people to help, but, she’s doing extremely well and is sharp as a tack. It’s the Home that drives me NUTS! They call me constantly- food choices, stubbed toe, etc! I’m her POA and her only relative other than my husband. Her other son passed away several years ago. So, I stepped in - she’s safe at her retirement village and has lots of friends so it’s not that terrible. But, THEY are getting on my nerves. She actually gets mad if they call me over nothing!
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I’m so sorry you are going through this. It is very sad to watch the decline .
I’m glad you are getting advice from your Elder lawyer . Are you thinking of placement for your husband soon ? Then you can take care of yourself better as well .
Does your husband have siblings to look after your mother in law ?
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Katybr Nov 8, 2023
No, his only brother passed away suddenly in 2018. My SIL has Parkinson’s. My MIL is 100 - how many relatives could be left? Everyone has passed. My 2 sons are in California and I’m in PA. They try so hard to be supportive and I appreciate it. My one son is a doctor in Los Angeles and just can’t fly home anytime he wants and I get that. The other one is in San Francisco and also can’t just leave.

I’m not ready to place him just now - maybe by next summer. Maybe not at all. This disease is horrific in that it moves quickly near the end. I already have Palliative care and Hospice is a phonecall away from the Palliative care people.

I sure wish we had a bigger family, but, everyone left seems to have medical issues. She just got over CoVid and being in hospital for a week and bounced back like a 40 year old! You can’t imagine the phone calls I got repeatedly from the hospital! Ready to tear my hair out!
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