I do not exactly know what I am expecting posting this question but how the hell do you manage caregiving and marriage?
My husband and I have been caring for his mother with dementia for 10 years. He will be 36 next year and I will be 35 next year. I hate what our lives have become. I have grown to resent my friends and family for having lives while I feel stuck. To go on a simple week long vacation we have pay around 4k because the only place that will take her for respite care is a high end luxury facility in New York.
We have tried marriage counseling but that is short lived because everyone wants to frame me like I am some monster because I hate his MIL for what her and this disease has done to our lives. I get my husband is trying to do the right thing cause yes his mother would not last a year in a basic facility she is far too high maintenance. She behaves like she thinks she is royalty. Everything has to be done a certain way or she baby rages.
My husband does his fair share but it sucks watching him try because his mother treats him poorly because in her head her son and I are out living our best lives. So he views him as just some stranger that her son is paying for to take care of her.
After 10 years I am at a breaking point. I love my husband and do not want to leave him. He is also right if he just did what is most convenient instead of what was generally the best he would not be the person I loved. His mother is doing well and very healthy outside of her dementia. She still has friends and gets plenty of engagement with her community and social interactions thanks to the efforts of my husband.
Things have gotten worse because I refuse to pretend everything is okay. I tell her every day I hate her. My husband gets annoyed because it does make things awkward because all she wants is to be around me, and she largely ignores him. I wish I could give him whatever she sees in me to him because he wants that relationship with his mother. He still tries to find ways to get his mother back and here is am wishing for her to die because she has made the last 10 years a living hell. I feel caregiving has killed a part of my very soul. I do not even recognize myself in the mirror I feel so hateful and bitter.
My husband is a fair and great man but I hate that he loves his mother so much. I know if he had the money he would place her in the place we put her for respite in a heartbeat we just cannot afford it room and board start at 14k that is not counting care.
My husband refuses to place her in a place he would not feel comfortable living in himself which I get. I did not sign up for this but I figured I could do it, and I did do it. Maybe it is just hormones or what talking because I saw my life vastly different from what it is now. Figured we would have two kids and a house. My husband gave up his dream job to for a job he hates because it pays more.
Sorry for the rant I just hate what it has done to my life and swear if the system cannot provide better for those that did not prepare as a means to punish them for not. That is messed up because it also impacts those that get stuck with the illusion of choice between caring for a parent and watching them suffer. I get it he made his choice but it is not much of a choice.
He should NEVER be spending your marital income on mother, never. Her income needs to be used for her care and management. If she does not have sufficient income, she applies for Medicaid like the rest of the poor slobs who need care for dementia but can't afford it. She can baby rage till the cows come home too, she'll get over it.
You say your MIL would not last a year in a basic care facility. How do you know that? She's lasted 10 years in your home which sounds like a hostile environment! So many folks make this blanket statement and it's rarely true. My aunt was dying at home in her daughter's home before she was placed in a Medicaid SNF with a roommate. Lo and behold, she perked right up after admittance and went on to live 5 more years!
You have a marriage problem, not a MIL problem. Truthfully, it's not her fault she's living in your home against your wishes, it's DHs fault. He's put his mother above YOU, his wife. And that's not okay.
You are not a monster for feeling the way you do, I'd feel the same way I'm sure. You are young and so is DH. How old is MIL???? With AD, she can live 20 or more years, you know that right?
If I were you, I'd move out of that house and tell DH it's you or his mother, not both. 10 yrs is way more than enough to have devoted to this woman. It's your turn now, for you and DH to have a real marriage or for him to stay devoted to her. He can't have it both ways, imo.
Best of luck to you. Sending you a hug and a prayer for a resolution to this mess.
She gets away with it at the place we send her for respite because the place matches her vision in her mind. A medicaid facility does not plus the level of engagement would be a fraction of what she gets now. I have done my own research and even places I went to tour and visit after explaining the things we do with my MIL they even said they would not even do a fraction of what we do.
She is 72 healthy as an ox outside her dementia.
You say “she still has friends and gets plenty of engagement with her community and social interactions”. Quite honestly, this doesn’t sound to me like 10 years into progressive dementia. Neither does “ she behaves like she thinks she is royalty”. Most people are a bit past that stage after such a long time. “Everything has to be done a certain way or she baby rages”. Whoopy Duck! I wish that would work for me! “When I explain her level of disability I get things like we have it easy” – perhaps her ‘needs’ rather than her ‘wants’ really are NOT as high as the care you are providing. She might not love facility food, but the chances of her starving herself to death are low.
My suggestion would be that you get a new medical assessment of what on earth is going on here. I just don’t believe it. It sounds like a very controlling woman who has got exactly what she wants, and has probably picked up some tricks about how to fake dementia. Before you write these comments off as "you just don't understand', you need to accept that people really do drift into situations like this while never questioning whether they are being led up the garden path.
You are facing another 10 years of this, plus no home, no babies, and even worse feelings about her and your husband. Are you prepared for that?
You may be making some wrong assumptions about care facilities. She would get “barely a handful of hours or attention in a medicaid facility”. That may be all the ‘nursing’ time she actually needs. Residents get together in other ways, they don’t sit alone in their rooms all the time. Fees 'start and 14K' sounds a bit high, too.
Many people come to the site wanting advice about how to change things without having a big row. Slim chance of that here! Perhaps think about this, and tell us how much you are prepared to rock the boat. If you aren’t, nothing much will change. If you are, perhaps we can come up with some strategies.
As for the friends, I don't think she remembers them per se but she is happy to see them as are they. They are her close friends prior to her showing symptoms and they still are good friends with her now. They are extremely understanding and love her dearly. Her friends did not ghost on her which appear to the normal.
The engagement is not like adult engagement more like adults with a child but she does have fun and you can see that. Their churches does support her a lot. Which plays a role why I feel like shit at times cause they appear to be able to deal with it while I am struggling because I want a normal life.
Their favorite line is God does not give you more than you can handle. Everyone is so warm and kind with her.
What do you mean rock the boat? You mean give my husband a choice? I thought about that my first thought is wouldn't that just create resentment on my husband's side. Oh look the women that made me choose between my mom or her.
For New York private pay 14k is actually not the highest One place was 25 to 30k all in.
As for the sitting around that is the point my MIL is not into puzzles, bingo, watching TV and stuff. She is still extremely active. She loves her garden, she loves to dance, get dressed up and go out for dinners, go the theater .
If you ask her what she did will she remembers? No but she clearly enjoys the experience and I think that is what my husband is focusing on giving her as many positive and happy experiences as possible. Heart of hearts I feel bad because what kind of person thinks giving someone that gift is wrong because they feel neglected.
Faking dementia? I get what you are saying but I laugh because my parents went through something similar with me oh she is not autistic enough because I did not tick every box neatly. I doubt she is faking it to the point doctors and both NYU and Columbia could not see it.
I will say I agree she does not need the level of care she gets but that is a more complex situation because what medcaid views as a need often differs from what medical teams think. Her medical team does not feel someone with demenita should ever be alone since you never know when they can have a lapse.
My husband does blindly follow what they tell him because they are the experts in their eyes. Just like when they told him blame the diease not the person and live in their reality it does just that.
Edit The facilities I went to were both SNF and assisted living both private and Medicaid eligible. I also looked into those small group home type deals.
NEVER involve yourself with a “man” that puts a parent over a spouse.
You need to figure this out and come to a decision whether you can continue like this or need to leave. Only you can decide this. No you are not a monster for not wanting to be a martyr.
These should be the best years of your life and your marriage. This situation is destroying it. You will not get these years back. If you want children, do you really want to raise them living like this?
He’s not looking to change this situation.
He even finds marriage counselors who try to persuade the wife that this is how she should live .
What confuses me about your post is that you say Mom-in-law has friends and gets plenty of social engagements with her community.... but does not recognize her own son??
Please go to the green/blue bar at the top of this page and click on CARE TOPICS... now click on the letter "D".... you will find numerous articles about Dementia, read as many articles as you can. Hopefully these articles will be helpful. And learn to say "I cannot possible do that" over and over until it feel easy to say. Use the next time your hubby wants you to do something for his Mom.
My husband has stepped up for his mother. He does not ask me to engage with her I sometimes find myself doing it because I see him struggling cause she feels more comfortable with me. Granted I have only recently become cold and nasty with her, but she still remembers me when we were sort of a happy family when I was young and stupid.
I will look at the other topics though.
Thanks for the article you posted but doubt if I showed that to him he would see that to support how claim that our medical system is not equipped to handle dementia and why would he let his mother get barely a handful of hours or attention in a medcaid facility. Was an interesting read though.
What if you went on your own vacation, got away for a bit. A friend or even just a nice pretty relaxing place, to read a few good books.
He may feel differently after some time alone with mom
I want space from her not my husband I do not want to go on vacation without him that is also the issue. I miss my husband not alone time. My husband gives me plenty of that when I asked. I want to be a normal married couple..
As far as your MIL’s high expectations ….. TO BAD. She doesn’t have the money for a grandiose facility . That’s just a fact of life . She’s not the first person that will have to adapt to a facility . Do you plan on doing this another 20 years ? She’s not going to be the first person unhappy in a facility either .
But she’s the one with dementia . She’s the one ill , but you are who is unhappy . Your husband is allowing his mother’s illness to destroy you and your marriage . Meanwhile his mother his happy as a pig in you know what . This is wrong on so many levels.
Dementia is an awful disease . But it is your MIL’s disease . It should not be ruining 3 peoples lives and a marriage . I placed my own parents in facilities , it sucks , but was necessary . Their problems became too disruptive for my family , maintaining a marriage and still had my youngest ( teen) child living at home .
I also only worked part time for a decade so I could help my parents be able to stay at home before placing them . They were placed when they needed 24/7 care. I was not moving in with them or having them live with me . I knew that would have ended my marriage .
“ Doing the right thing “ affected my income and retirement savings because I did not work full time . That really wasn’t fair to me . My parents refused to let hired help come in the house and they could afford it . I now regret not setting better boundaries . I was groomed by my mother to be their caregiver .
Your MIL can not live in an overly staffed facility with constant attention because she can not afford it . I’d like a beach house too , but not happening. We don’t all get what we want , and especially not at the expense of someone else’s life , marriage , and finances .
Your husband is using her dementia as an excuse for your lives to be upended because his mother is a spoiled high maintenance brat with expensive expectations . She needs a reality check that she can not afford the Ritz Carlton of facilities . Your husband needs to take off the mama’s boy shorts and put his big boy pants on and MAN UP.
I don’t have an answer for you , your husband seems totally brainwashed , and easily manipulated by his mother’s demands . And you defend , your husband’s choices . I don’t see your life improving unless you leave and rebuild your own life .
I think you need to tell him what you have written here. You can’t go on like this. You did it for 10 years (!!!) and you can’t take it anymore. He needs to choose between living with you and living with his mom.
I don’t get why paying for respite care and/or residential care is his/your problem. Does his mom have zero assets and zero income and no Medicare?
I also don’t get how marriage counselors painted you as evil. You have just as many rights and needs as your husband does. The living situation has to work for BOTH of you. His mom is not part of the marriage.
It sounds like he has lack of boundaries and people pleasing /fawning tendencies with his mom. Like he thinks if she is upset, his security is threatened. Maybe she brainwashed him to think her every whim was his command. It’s weird she gravitates more to you.
If you are not able or willing to be clear with your husband and lay it on the line, another approach would be to say I’m taking a full time job and signing up for night classes or taking up hobbies for most of my free time because I can’t stand being in the house with her any longer. But I don’t think that what you really want.
Good luck!
I have been clear with him and he has stepped up it just has only added to my resentment. Since she has taken more of his time away. I have gone back to work which does help me feel a little normal.
Thanks for the Feedback.
I'm sorry but your husband needs counseling. I to, have a mom that never gave me unconditional love, and I craved it. I did everything for my mom after my dad died, hoping to get that. I had to accept the fact that I never will. If I didn't accept the fact , I would of distroid myself and my marriage.
Your husband needs to find a way to accept this, and do what's right for his immediate family, and that is you! not his extended family, which is his mother
I think you need to try and get your husband some help, to help him get his priorities straight. If he won't, you need to do what's best for you.
Sorry you are going through this 😔