I have been helping my husband provide care for his mother since 2019 after his father passed. My husband works as lawyer and last year he was able to use his connections to get her approval for 84 hours of in home care despite not technically meeting the requirements through the fair hearing process.
This is where the issue lays, the help he has gotten his mother was not done in a legit or proper manner. He had doctor friends submit documentation, and knew the Judge that was overseeing the fair hearing. He tried doing it the proper way but kept hitting road blocks. It is great we have the care, problem is I want her out now, I thought I could get by with the extra help, but I want my space and house back. I want our home to look like a home of 30 something year olds, not a pseudo nursing home.
I know placing his mother would 100% destroy him, but her being her is destroying me. He would not be the same person if he had to place her before he is ready. As my therapist has stated this is a situation where if it no longer works for one it no longer works for anyone. I know my husband is kind, he will go out of his way to help those in need, I am in need now, and the only thing he can do to help me is place his mom.
We spoke about it in the past and he knows his limit. He knows he will not be able to stand seeing his mother placed, he knows hearing the phrase can I go home with you would eat him up. He knows seeing others in that situation will just remind him what is to come. He also knows none of her friends or family will visit her.
She is happy here, she has friends in the neighborhood, she is active part of the church albeit with our assistance. She loves her day program, my husband regularly funds trips through connections he has made for the day program. I am just done, I love my husband, we have been married for 10 years. He has been my rock through everything, and now I feel horrible because in his time of need I am no longer able to be his. In short leaving him lost at sea.
I am not sure what exactly I wish to accomplish with said post, but I need something other than being told I am kind, and such a great wife for doing this. I knew marrying someone on the spectrum would be rough, but I do not think I have it in me to help him through another downward spiral of guilt like he had when his father died. Even to this day he still wonders what more he could have done even though he knows nothing could be done. In this case something could be done I am just not willing to be part of that something so it breaks down.
Do not get me wrong he helps in anyway he can, he just does not leave it up to me or the aids. He does work long hours though so he is not as readily available as he would like. He does make sure to make time if needed, and generally leaves work at work.
Thanks for letting me vent.
Respectfully, I don't think this is the pressing issue. And neither is the fact that your husband is "on the spectrum".
Your predicament (if I understand it correctly) is that MIL is on in-home Medicaid (the max possible) but probs wouldn't qualify for Medicaid-funded facility care since she doesn't medically need LTC right now (and this can vary by state but most states' Medicaid only fund LTC facility care). And who knows how long it will be before she qualifies.
Your predicament is that (even if your husband wasn't on the spectrum) you'd need to pay out lots and lots of money to have her live in a facility for who knows how many years.
She's only just 66... and I assume that her SS goes to pay for her in-home Medicaid care, so she can't contribute to household expenses.
She needs to be out of your home but paying for her care over that many years will be non-sustainable and robs you and your husband of your own future care funds. Seems like in-home care with privately hired aids is the only real option until MIL needs LTC. I assume your husband is her DPoA. Resigning this and permitting guardianship by the county is the other option but I doubt your husband will ever be willing to do this.
Have you tried talking to a Geriatric Care Manager? Or a Medicaid Planner for your state (even though she's already on Medicaid, you need a strategy to pay for her future facility care).
Research respite care options so that for now you can have breaks, and hire companions to keep her busy and drive her places (a companion aid doesn't need to have any certifications so are more affordable hourly). FYI hiring people makes you an employer in the government's eyes.
Contact the main office at her church to see if they have a Care ministry, which might provide regular volunteers for a few hours a week. This will require management (been there, done that in our church). See if her friends are willing to take her out for an entire day once a month, if you haven't already explored this.
You are in a sorority of adult children who are stuck in a financial conundrum with a needy parent. For the time being I don't see any other solution other than to pay for in-home companion aids and find volunteers.
You aren't wrong to want your lives back. Keep seeing a therapist so that you don't get eaten up with guilt and can figure out how to stop enabling your husband in this situation (and these boundaries will be harder to identify due to the conundrum).
If I've gotten anything about your situation wrong, please correct me.
I wish you much clarity, wisdom and peace in your heart on this journey!
Her friends are awesome, and caring we have offered to fund full day trips. They will gladly take her just not alone so either I or my husband has to go with them. That being said they do take her out to for a couple of hours every so often without one of us needing to be around and we pay for the entire outing. Understandably so they are worried about liability, and as they have told us they are friends not caregivers or companions.
I will look into her Church and see if they offer any services. If they did, I am surprised they did not offer it by now. I will still inquire about it nonetheless.
The spectrum aspect more so just makes it more challenging to have conversations regarding this issue with him. He has a very black and white view of the world. Extremely binary way of thinking someone needs help, then he finds a way to help. In this case it boils down to his mother cared for him, he cares for his mother.
Yes, she currently does not meet the medical needs for LTC, but generally requires too much oversight to live in AL and she cannot afford AL on her own. You are correct we have found ourselves in a situation that mentally I cannot see myself being able to sustain, but I do not see how we can sustain the solutions financially that would “solve” our issues.
Really do not understand why a 66 yo woman has to live with her son. What is her problem?
I thought of the Princess Diane quote "There are 3 people living in this marriage"!
He sounds like mama's boy, takes a special wife to live with a man like that, my father was one created many issues in my mothers marriage to him. She ended up divorcing him due to this.
I can only suggest that you have a heart to heart with him laying everything out seeking a compromise.
Knowing me, I would have to say it is either her or me. Possibly I would move out and live apart, let him feel the full impact of living with his mother 24/7.
That's all I have, wish you the very best!
He tends to go above and beyond for anyone in need, he has always been that type of person. He could give the shirt off his back to someone in need if he had nothing else to give. It has been a real problem cause he underestimates or simply does not see the dangers or problems such behavior can cause.
Have you tried dividing the house? Is there a back door, an entrance for the aids? A yard, ability to expand?
Start dreaming of some changes.
Maybe a SHE SHED for you? See those on YouTube.
A space for you, and room enough for lunch and a visitor or two?
A tiny house or RV in the backyard? Most people would put the MIL out there, but consider it an escape for the two of you, or just you.
How do you feel getting a part-time job for yourself, something you would like to do?
You dearly love your husband but you hate not having your privacy.
I would like to express my thoughts on both sides of the story. You see, I had my mom move in with us after she lost her home in hurricane Katrina.
Mom didn’t need an enormous amount of care when she first moved into our home.
She couldn’t drive due to seizures and her Parkinson’s disease was in the early stages then.
She could still cook and fixed her own food while I was at work and the children were at school. Everything was running smoothly until her disease progressed and the years kept going by.
Eventually, I had to have additional help for my mom. I quit my job which threw me into depression.
It is hard to care for a parent in our home for an extended period of time. Mom lived with us for 14 years.
My husband was like you. He was very supportive in the beginning. As the years went by, he really missed not having our home to ourselves.
I was struggling like your husband, torn between wanting to keep my mom happy and wanting my husband to be happy.
Sadly. I wasn’t being fair to my husband and I horribly regret it. When he voiced his opinion about his frustration I ended up in therapy and it helped tremendously.
Mom ended up living with my brother for awhile. We needed a break! Later on she moved into an ‘end of life’ hospice care home where she died at age 95. She adjusted well and received good care.
You went to therapy and I agree with what your therapist said to you. I’m wondering if your husband would go to therapy. Your therapist would be able to act as a mediator for the two of you.
Have you asked your husband to go to therapy with you? Do you think it’s too late for that? I guess I am wondering if there is too much water under the bridge.
I truly hope that you will be able to find a viable solution for this situation. You are the only one who can answer what is best for you.
I don’t think that you should be miserable. If this means a separation or a divorce, it’s unfortunate but might be necessary. You deserve to live in peace.
I hope that your husband will value your relationship over his concern for his mother. He needs to be reassured that his mother will most likely adjust to a facility. Even if she wouldn’t, you should come first, not his mom.
Best wishes to you and your husband.
And the good news is, you do have options!
It appears that even though you are calm about it, you have passed the burnout stage. However, you did the best thing for yourself that you could do at this time. You have gone to therapy!
So, agreed, your therapist says if it's not working for one, it no longer works for anyone. What's next? Does your therapist have experience working with 'special needs spouses' ?
My therapist recommended he seeks grief counseling with someone that specializes in dealing with neurodivergent individuals.
Does this have to do with Long term care policy? Or an Elder Waiver program?
Does it mean that she can't afford AL on her own?
Does she have a diagnosis of Alzheimers? If you two are only in your 30s then she can't be much older than 60s or early 70s... she can be living in your home for a very long time.
It's not wrong to stop being the care solution for your MIL, but if it's a money issue... more info would be helpful.
"84 hours of in home care despite not technically meeting the requirements through the fair hearing process" means he pulled strings to get her the hours by bypassing the Medicaid requirements. Which means on paper she is worse off then she actually is in terms of medical need.
It is slightly a money issue, but not a huge one. I know my husband would go out of his way to make sure she gets the possible care, and we are not exactly hurting for money. That being said Eldercare is not exactly cheap, nor does it get cheaper as time goes on. We are comfortable, but by no means could we reasonably sustain the cost of providing care for his mother long term out of our pocket.
She is also on the younger side. Will be 66 next April.