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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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!
Peace in my heart is my goal. Thanks so much for your kind words.
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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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.
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!
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.
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.
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………
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 ?
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!