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.
The term for not "technically" meeting the requirements and getting the services anyway is FRAUD. You talk about a fair hearing process so I'm assuming you're swindling Medicaid for the free homecare for your MIL.
You get 84 hours a week of free homecare and your MIL is in a day program?
So basically, you don't have to do anything for her. She's happy in your neighborhood, your man is happy, and you don't actually take care of her.
Do her a favor and find her a place of her own in your neighborhood. You're ripping the state off for enough homecare hours that between that and her day program she'll never be alone.
Then count your blessings that the homecare hours you and your husband are fraudulently stealing are not being provided by my homecare agency.
If they were you would be reported to the state for fraud so fast your heads would spin.
If so, no wonder you are not okay with that. The penalties for fraud can be major.
His mother needs the support, she meets all other requirements besides their requirements for “physical assistance” they ignore that safety and support play an important role when caring for someone with cognitive issues.
I do not think he defrauded the government just did what Lawyers do find loop holes around problems. The issue I have noticed is by him doing it this way is any LTC placement will see she does not meet the medical requirement. So she is stuck with us until she gets to that point, and who knows how long that will be. From what I gather vascular cognitive impairment is related to vascular damage that do not meet the criteria for a diagnosis of dementia yet.
Her doctors have told us everyone progresses at different rates, they have seen people progress slowly, or rapidly. Without my husband doing what he did I would have lost my mind.
You likely will not be able to get thru to DH if the therapist failed. He'll be unable to care for her long term, as will you, bc you're both out of your realm with what's involved with dementia as it progresses. And it's ugly.
You may have to separate for a month or two to give dh a feel for how it is to live w/o you. But again, if he's hellbent on caring for mother, there's probably nothing that will change his mind. I was married to a man on the spectrum for 22 years and I know how their minds work 😑
Good luck.
Her doctors said it could be attention seeking behavior or something flips when she is alone. As for the dementia, the way her doctors explained it to us. Her baseline has not altered from the moment she had her stroke, and said stroke is the sign of damage that can be seen. She is able to complete tasks and function with a person present. By herself she is all over the place and confession sets in. In short makes it hard to determine what is what. I think what they call it is show timing.
Even with that being said, from what I have gathered dementia in itself is still not enough to get someone in LTC with Medicaid. Based off what all the professionals have told us dementia in itself is not considered a skilled medical need under our state guide lines. Her issues are also not physical in nature, she does not need physical assistance to complete tasks, more so social or emotional support. We are in the wait for it to progress phase. They doctors keep calling it the gray area. Where to be safe they need someone to watch them, but do not need physical assistance. In turn gives insurance companies a way out of providing care.
I agree we are out of our depth, I am not built to be a caregiver. I do not have the patience or mindset to simply blame the disease. I cannot separate the disease from the person. I know they do not understand, but in my head I feel they should understand.
I was present for each nursing assessment each one stated she is functionally extremely capable. The way they explained it to be is confusing, but the nurse stated need is calculated based the task, each task has an amount of time associated with it. My MIL’s issues even with me exaggerating the frequency only got her 28 hours a week.
So yeah I do not know. I know my husband would not lie to me, and going based off what I have personally seen and been told by the nurses, and the social worker that came to the house. You appear to need to be a complete wreck to get any sort of meaningful assistance the legit way. If you personally have no funds.
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.
I know for certain I would. Only reason we are upset is because while we are forced to give up our futures, or riddle ourselves with grief by placing our LO before we are ready.
People like the OP get to still have lives. It sucks but that is not the OP's fault. Friends with benefits has been a thing probably since the dawn of humankind.
Fraud is unacceptable.
Don’t water it down .
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.
It is not a technicality . It is not scamming the system. The law applies to everyone needing mental health services. Not everyone is aware of these laws. Becoming aware and obtaining a fair hearing to access these mental health benefits (same benefits provided if you were physically ill) is not fraud.
The system is required to pay for these benefits by law. It does not take fraud, friends, cronies to access these fair hearings on a technicality. You just need to know about it.
It would not be an appropriate placement for your Mil to be in a SNF because they do not provide mental health services there. People needing this kind of care are often placed in a group home or board and care to obtain the supervision required if their family cannot provide it. However, the board and care homes are very limited in the physical care they provide. The law allows for these caregiving hours even if the majority of the Mil needs are supervision and behavioral issues, and not just post stroke physical care.
I feel that the OP has unwittingly misrepresented what she believed to be a "technicality" in accessing services for her Mil. The fair hearing judge did not likely do anything illegal in approving the hours. imo. Maybe in these cases, it just takes a "friend", or a strong advocate to listen. Definition of an advocate
is judge.
So, maybe the OP did not fully understand the law which provided the caregiving hours?
Why are common sense caregivers jumping to conclusions and literally judging this poster and her husband? No one here has ever been in their thirties?
The elder care system is designed to maximize suffering for the elerly and family caregivers.
Thats why many caregivers die before the person they are caring for.
Thats why many caregivers are financially ruined. Thats why many caregivers are mentally and physically broken.
We should all work together to find loopholes for ALL caregivers. Loopholes and preserverance to find said loopholes are the path to freedom for all caregivers.🗽😄
And I am going on 14 hours without water right now. I can guarantee you if i could find a loophole to get the water back on i would do it in a heartbeat.