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.
My oh my. What I get the most in reading that is sadness that YOU have been lost in all of these opinions.
The fact of the matter for your mother is that many times, no one wants to put an elder in a home, but when it becomes unsafe physically or mentally for the patient OR the caregiver, decisions have to be made.
It does come across as misogyny that your family talks about how your husband is a “great man” while ignoring what you are going through. How your family and your husband expect you to live on crumbs. They. Are. Wrong.
YOU ARE A PERSON DESERVING OF LOVE and it’s OK for you to have needs that you want fulfilled. As a wife. As a woman. As a person.
You matter and you are getting lost in all of this.
I support you in whatever you want to do.
I'm saying I don't feel like I want to give you an opinion on it either way, because this is one thread, one side of a story. Unless there is abuse I never give an opinion.
There is definitely neglect from your husband to put his mom before your marriage. That I do not disagree with at all.
But I don't want you to be swayed by a group, that do not know you, have never met you.
I wish for you to do what's best for YOU.
Maybe leaving is best for you, maybe things can work out.
I do not know, only you know. If this forum gives you the strength to leave and do what's best for you, that's awesome.
I'm just saying I'm neutral and not voicing an opinion.
He needs to make some major changes to his attitude if this marriage is to survive! Perhaps that’s your answer?
That is such a meaningless throw away comment from him. It’s really kind of silly now that you pointed it out.
Where in the Bible does it say it is OK for a couple to take marriage vows, then the husband brings his elderly Mother into their home to basically take over?
You are sacrificing your prime years to babysit a classic Senior Brat?
Two is company, three is a CROWD.
What happened to Mom's husband? Where is he? Why did she move in at 65 with newlyweds?
I would see a lawyer tomorrow. You've wasted 10 years already, gotten nowhere, no children, no happiness, vacations, or romance...just Mom the Brat running the show...IN YOUR HOME.
Better make sure you get your share of the marital assets, and get out of there pronto. Life is too short for this ridiculous arrangement.
This guy isn't a husband, he's a Mommy's Boy. He'll never get another woman to tolerate this crap at all. You can do so much better.
You won't get that 10 years back. Get a divorce, get your fair share and move on! Be glad you didn't have children with this fool. He is useless and hopeless to you right now. No counseling or church advice matters. He's not honoring his vows, so get out and move on!
You and your hub are not responsible to provide for all mil's "wants" nor for her happiness. Caregivers provide for "needs" such as food, shelter, cleanliness, but not necessarily "wants" like extremely expensive respite. And certainly not "wants "at the expense of the caregivers' mental and physical health, financial security, and marriage.
This has gone on too long, You need to set some boundaries for yourself as to what is and what is not acceptable to you. You can't change your husband, you can't change your mil, but you can change yourself. Often when one person in a relationship changes, others do too, but not always. You set boundaries to make your life better for you under the circumstances you are in,
When you wrote "I want more time with my husband", that was a cry from your heart. Let him know that you want, in fact, need, more time with him for your relationship to be healthy. See if the two of you can work that out. If he cannot or will not respond to your need, you have to set consequences
In my view, a fair and great man. attends to his wife's needs before he attends to his mother's wants.
State your feelings with "I" statements, state your needs with "I" statements. State the consequences with "I" statements.
"JIm, with all this caregiving, I am missing relaxing time with you and us doing things together. The last 10 years have been very hard on me and have not been how I pictured our lives. I need more time with you doing things together apat from caring for your mother. If we can't find more time for us together. I will have to go out by myself and with friends for some relaxation. It's not what I would prefer, but I need to be doing more outside of looking after your mother."
or words to that effect.
There is a book often recommended here called Boundaries by Cloud and Townsend. I suggest that you read it and apply at least some of it to your life. Not all churches/faiths support putting a parent before a spouse.
If your husband manipulates couples counselling to his preferences, then you could find someone for yourself and go alone. You can get support for you and your needs.
Wishing you all the best. It's not rare to see adult children sacrificing themselves, their dreams and their marriages on the altar of caregiving a parent, but it will never be the right choice.
His wife has needs.
His mom has wants.
He has ignored his wife’s needs in favor of his mom’s wants and that is not ok
I sure hope we have given OP some good talking points.
It is difficult to fathom that you would choose to remain in your current situation unless/until major changes are made. However, every individual's situation is different, and the choices are yours to make. The first step is to be very aware that there are OPTIONS. There are CHOICES. You are NOT an indentured servant.
You have already surrendered 10 years of your youth, but at 35 you still have a lot left. MIL has effectively run your household, although it is NOT (or should not be) hers to run. IMO, placement needs to be a consideration. When/if the time comes that my husband (94) and I can no longer "do" for ourselves, we will need home care or placement in a facility we can afford. Our adult "children" are in their 60s and work F/T. They are not our ultimate old age care plan. Question: had MIL been diagnosed with dementia at 62 when she moved in with you?
It's terrific (for her) that your very demanding MIL has church friends to socialize with, but the role of the church should NOT be to support her while relegating you to a subservient position. The stance of many religions on the treatment of women is a major reason why I walked away when I was 18, and I have never looked back. If your "great" husband continues to revere mom and religion over you, his wife, that would be a deal breaker (for me).
As well as “ me time “ at home where you hide in your bedroom reading , napping etc .
Mark off days on the calendar that you will not be available for caregiving . Live your life .
Take time to think about what you want to do and say . Then talk to your husband and see what if any changes he’s willing to make, if you want to stay in the relationship .
You need your space to work through your feelings, get your life back on track and worry less about his mother. They may get mad because they lost a slave, but they will get over it. You still have some childbearing years left, and I wouldn't waste anymore of my youth pondering over a situation that will only get worse. Even if your husband and you decide to have a little one in your new space, so be it. Whose to judge. I was a single parent and divorced. My daughter is forty six years old, and she turned out fine. However, I am not even advocating divorce. Just getting a separate space from that chaotic woman.
You and your husband can't give up your youth because someone is old and sick. There will come a time that his mother will require a higher level of care that he will not be able to provide. It sounds like his mother has her support of church and such. Just start setting your life separately from hers and start enjoying life. Sounds like dear old mom has everything figured out and she is living the life. So, it is time for you to get some peace and perspective on where you want to get out of life. If you husband still continues to put you second to his mother after all is said and done, then you will know what to do next.
Living like Royalty? No, Royalty has far more genuine ‘work’ to do. Queen Elizabeth did more than this when she was over 90. This woman does NOTHING. You need to get your own doctor to look at your own needs. MIL has a support group, not doctors. Please keep thinking!
I will say one thing her friende will be with her till the end. I get it may be uncommon her friends have not ghosted on her which she is extremely fortunate to have. I doubt I would have lasted this long without her friends and church offering the support they do.
However, clearly ALSO, he has chosen his mother over his wife, and that for 10 years.
I see no mention of children here. I very much hope I am correct that there are none?
I also see no mention her of MIL age? But thinking in terms of the possibility that with good care she may well make it to the age of 100, you will know how long this can go on.
You married at the age of 25. You have never been without the presence of a woman you do not like in your home. Do you think that is fair? To my mind, it is not. Do you think that your husband is right to let this happen to you over the course of the last 10 years when you are so unhappy? Because I don't.
You are a grown woman now. You must make your own choices about what you are willing to live with. For me I would never have allowed this to happen in the first place. BUT, if somehow it HAD happened, I would very early on have said to my dead husband:
"Honey, I love you very much and find you a loyal and loving man. But you have chosen your mother, who I do not get along with, over me. I am so very sorry, dearest, but I must now be moving on. I will hope to remain your friend forever, and I will be happy to occasionally help you and mom out, but I am not willing to live with her. For me this is a deal breaker, and in all honestly I am ashamed of myself that I have not stuck up for myself and what I know to be right long before this.
I hope that we can see an attorney now and come to some good division of our assets. I will be moving on now. I wish you all the the luck and love in this world, but I choose not to live my life with your Mom. She isn't who I married."
That's it. You love him. I am certain he is very sweet. But he has made a life choice that does his wife harm. To my mind that isn't very manly. That's the action of a child trying to please his mommy. So while I may agree he's a nice guy, I think he isn't very nice to his wife; for me that's a deal breaker.
Good luck, hon. I wish you all the best. This is YOUR decision. If you choose to stay here knowing all this, then no whining. Just be polite and be nice, and eek as much of a life out of it until his mother dies. Make a life of your own. Don't bring children into your household to suffer at his mother's hands (and mouth). They, too, may be mistaken for slaves.
Best to you.
The doctor’s are trained to be the advocate for the patient . My mother’s doctor had a more realistic full view picture approach .
That doctor saved me . She told me she was more worried about ME than my mother . My mother was an entitled , manipulative , abusive , difficult person . The doctor told me when caring for someone like her is a battle , it is time to place them in a facility . Yes , that is what the doctor told me . The doctor told me it is only going to get worse and that me and my marriage and kids mattered too .
The doctor told me , when they are this difficult , a parent can not be cared for by their family at home . The parent with dementia is ruling the home because they think they can do this because they are the parent . They won’t listen to their adult children who are caring for them When caring for them becomes battles as you say is happening with your husband and his mother , than this is no longer working . Caregiving has to work for the caregiver as well . When it doesn’t , then a change is necessary . In this case placement in the least bad option an available . You and your husband should try to not use your own money to pay for her care.
I was at my wits end with my mother , trying to get her to shower , etc .
My mother was resistant to any and all approaches in the books.
That doctor said what’s not in the books .
She was more realistic . She told me Mom will be miserable but will eventually adjust . But that doesn’t mean she will be happy. But she will get the care she needs and me and my family can have some normalcy to a degree . It’s not easy dealing with them in a facility either . The whole situation stinks.
Placing them is difficult . My mother became much more verbally abusive towards me and even called 911, and lied and said I was stealing her money and admitted that she lied about that . But she was angry with me .
Your husband may never get that loving relationship back with his mother that he’s looking for no matter where she lives .
Some dementia patients are more cooperative with family . But when they aren’t , it can be impossible.
I encourage you to read more threads here under the burned out category . You are not alone feeling like you’re being robbed of your life .
Ive been here since about March, I to was told by everyone around me to just keep doing what I'm doing, suck it up. Confided in a friend, about my resentments towards doing everything I was doing, she said well , your just going to have to suck it up! She said, " I did it, get over it." Well she took care of her dad for 3 months. Long term caregiving is a whole other ball game. Got so depressed, I was wishing for a Mac truck, to pull in front of me, leaving moms. No one has answers for me. Everyone I talked to just made me feel like a complete looser , because I just couldn't do what I was doing anymore.
Nothing against church, but this is common, also I think this mentally is more common rurally.
Then when I found AC , a whole other prospective was given to me. I was hesitant, didn't like what many said to me at all, but I sucked it up, because I was pretty much on my last thread.
Listen to what they told me changed my life, you do not have to take all the advice or any, for that matter, but I'm glad you haven't thrown in the towel on us.
Not sure if I've repeated what others have said, or not, if so just ignore that stuff. But I do hope we can all continue to help you figure this out .
We are a support group to support you and help you, not really to help mil . Caregivers get no support.
Look at all the people you say are helping your mil, do any of them look you or your husband in the eye and say, " How are you doing" and really mean it and care. Well we do.
"More common in rural communities" is often about running and inheriting the farm.
I cared for my own mother around the clock 24/7 while she died at home from galloping cancer. The last stage after she left hospital lasted just over a month. She was also rational and pleasant. Very different, huh?
Second, when you are the in-law you are in a hard position. So often the adult children who are caregiving feel like they are caught between their spouse and their parent. The loyalty SHOULD be to their spouse first. But it puts the in-law in a bad spot because no one focuses on THEIR needs or THEIR relationship- they only focus on the care and feeding of the parent.
You guys are so young you started caring for her when you were barely even spreading your wings and getting out into the adult world. It is unrealistic to expect to care for her indefinitely! I can't imagine asking my 25 year old daughter to become my permanent caregiver. You have a right to your lives, your marriage, and if you want children - a right to have them and enjoy that time unencumbered by the responsibility of caring for his mother.
You can care for someone without providing hands on care.
I suspect what you really hate isn't that he loves his mother so much (though I guess there are extremes in every situation) - but that he puts her needs and wants ahead of yours, the person he chose to start his own family with. For better or for worse, in sickness in health- that's intended for your spouse - not whomever the spouse sees fit to take on and provide care for outside of your own family.
Caregiving DOES kill part of your soul. Not having even an inkling of an end in sight - even more so.
Dementia is progressive - it won't get better - it will only get worse. And there may come a time (maybe even that time is now) where he has to eat his words and consider memory care because one person or even two cannot do it alone.
It hurts my heart to think of my daughters chained to me at such a young age (the age they are right now) and not being able to live their own lives to the fullest. I didn't have children so they could take care of me. My job was to take care of them until they could take care of themselves. I gave them life so they could live it. I want them to go out and have adventures, and make mistakes and fall in love and try to make their dreams come true.
I'll tell you something else. Your DH may think that because you are young, that you will have plenty of time to do those things once he no longer has to care for his mom. But you can't get those years back.
Never be sorry for your feelings.
We have gotten a second opinion that is why she went to two separate networks of hospitals that had a demenita and alzheimer's program.
She had a battery of MRI's, blood tests, CT's, cognitive, neurology both physical and psychological. As stated it was not been hell for the entire 10 years. It was a progressive burn. My lashing out as been a more recent thing after things started to get harder on us around 3 or so years ago.
As for how my husband and her cope now that I went back to work. Thankfully their church does offer a lot of support as does her friends. Her friends will take her out when they can. They are the ones that take her to do her hair and nails with them. They go to shows together and have lunch every Sunday. She thankfully still has others in her life that do care.
Sometimes they also have volunteers that come over as a companion program for the elderly and sick. He makes it work, if he has to he will also hire help off sites like caregiver.com. He has a few regulars.
As for the questions regarding children. I do not know even if I left my husband I don't see myself falling for someone else. I love him and at the core I know he also loves me. He is trying his best to do what he feels is right for both myself and his mother. I cannot fault him for that.
As I mentioned it is less about being scared of his MIL or he baby rage moments. It is more so the information my husband did get regarding how to deal with behavioral issues. He has been told many times to never raise his voice and do what he can to live in her reality. The things I have been told her how to deal with such behaviors goes against everything we have heard and been told.
As for example the thing about adaptation. We were told by resources provided by caring kind and alz association the person with dementia has lost the ability to adapt it is up to us as caregivers to adapt to the situation not the other way around. You know the it is not their fault. They also advise give them the food they want instead of trying to force them to eat something they don't want.
The advice given here largely goes against everything my husband and I were told and maybe if we were told this things would be different.
I'm curious if you think back 10 years ago, how much decline has there been. Is she pretty much the same or is there a noticeable difference?
Also 3 years is still a long time to be on edge and depression, 3 years ten years , really no difference.
Your MIL behaves like a spoiled, high-maintenance, entitled royal princess because you and her son ENABLE this behavior. You two have been maintaining the status quo and have been for the last ten years. If you stop maintaing the status quo, your MIL will get used to being less pampered, less waited on, and less demanding because she will have no choice but to adapt. She will also adapt to life in a memory care facility that is not a Four Seasons hotel branch because she will have to. You'd be doing her a favor ignoring her "baby rage" now because it's sure going to get ignored in a memory care facility.
Your husband chooses his mommy over his wife. He should not have married. The day you two put the rings on each other's fingers you became consecrated to each other. Not to his mother or yours. He is not honoring his commitment to you. If he won't, then it's time for you to go and find a man who will.
So here's the solution. Your MIL gets permanently put into a memory care facility that she can afford. It will not be the high-end one you put her in for respite care either. The two of you can be good advocates for her in memory care and make sure she gets decent care. You can bring in good meals for her if the food isn't great. You can wash her clothes at home. You can get her a privately-paid hired companion a few hours a week to spend time with her. She can do well enough in a memory care facility if the two of you are advocating for her and keeping on the facility to provide decent care.
So, you don't ask your husband this today. You TELL him. If he refuses or tries to guilt-trip and gaslight you about MIL going into care tell you're leaving, then go. You deserve better than a man who will never put you first. What happens if he fathers a child with you? You'll be on your own with a kid because mommy and her dementia care needs will come before any children too. So you think about this.
You'll be 35 years old. You won't stay young forever. If your man won't put you first in his life, find one that will while you're still young enough to build a life with someone.
She expects to be treated like royalty because the OP and her husband have been the enablers for years. They have catered to her, humored her, and allowed her to make demands on them that she had no right to make or even expect.
If they stop being her enablers and put her into memory care, she will have no choice but to adapt.
Wil you be saying the rest of your life your mil ruined these years of your life
Years that you can't get back.
I have younger friends, they got married 2 years ago. The husband is working at getting his family out of a very bad neighborhood. A week before there wedding, he moved his sister and 2 boys in, without asking her. Helped her get a good job, and eventually she got on her own. But the wife never got over it. And they are most likely getting divorced.
This is just a case of 2 different people wanting different things. Both your husband and my friends husband doing what they feel is right. How can you bash either one really, they both are doing good deeds.
But it's a case of 2 people just wanting different things in there life. No one is really wrong here, or in my friends case. I don't think my friend will ever get over it and the way her husband is, and he is always going to do what he feels is right for his family.
I can’t believe you are giving up having kids for this mess.
In your shoes, I’d get a second opinion. It could be medical, it could even be from a professional caregiver. I’d be particularly interested in how Burnt would react to these demands! Or even what your own 'medical team' would say if you told them that YOU are 'at breaking point'.
You say that you have gone back to work. Is your DH at home all the time? If not, how does MIL cope?
Really, it’s up to you to decide what you can cope with – from MIL and from her son. I certainly wouldn’t be putting up with this. But it's a decision you will have to make for yourself - there is no point in waiting for MIL to drop her demands, and not much more point in waiting for your husband to see the light and put you first. It might be worth considering whether your love for this ‘fair and great man’ might eventually run out, and how you would then feel about all these wasted years.
The other factor is the generally speaking I noticed most people don't really care about the caregiver. Everything is shaped around the person that is sick. For many it seems the world beings to revolve around the person with the illness. Also other factors when someone gets praised for doing the right thing by keeping their parent home, or being told how they hope their child will do the same for them if they found themselves in such a situation. Caregivers are often praised for giving up their lives by the general public and judged for placing them. Very few under how hard it is to make such a choice, and how much courage it takes to do so. Granted, I think this has a lot to do with the optics of nursing home care, and many places do need to do better to make them feel more welcoming and appropriate.
Even when I toured places for my MIL optics matter, I cannot tell you how many places had just had people lined up in the hallway in wheelchairs during meal time because that was easier to manage then bringing and watching them in the dinning hall.
I had to divorce my wife, I am still good friends with her and trust me it is hard sometimes I want to jump back in to give her help because I love her, but I have to stop myself because I have to put myself first. Yes, she is struggling and it hurts but that is the choice she has made and I will respect that choice.
Now this is the moment you have to make a choice. Do what is best for yourself, don't hate your husband, hate the situation. Don't blame him, yes blame the disease, and as such think what you want. If you do leave just remember you did not leave because of your husband. If you feel it is a fair and loving person then that is what he is. No one here has the right or even can say otherwise they do not know him.
Do not let others frame your view of the situation, but use their experience and knowledge to help you see what you want. I did a lot of therapy and one thing my therapist told me after the divorce. Life is about making choices that will not lead your future self, hating their past self. Pretty sure in this moment all your husband is trying to do is trying to mitigate how much regret he will feel in the future.
Hothouseflower is right. The husband is not a fair and great man. He puts his mother before his wife and that is wrong. If he wants to be a momma's boy, he should not have married.
As for the 'faith-based' counceling services. What faith says for a man to put his mother before his wife and children?
I was baptised and raised in the Catholic faith. The interpretation of 'Honoring thy father and mother' I was taught in that faith was that you had to tolerate and honor abusive deadbeat parents. This also inculdes financially supporting them and you owe them if they need a care slave at some point.
Then I met a nice Jewish boy, took up his faith, then married him. Twice. How God's Chosen people interpret the honoring the parents is different. You honor your parents by living a good and righteous life and doing right by your spouse (whom you are consecrated to) and your children as your parents before you were supposed to do.
I like this way better. Also, there are other ways to care for one's parents other than sacrificing your own family and life to live with them and be their care slave 24/7-365. Or going bankrupt paying for them in a facility. You can honor them by being a good advocate for them if they're placed to make sure they receive decent care. Tolerating abusive behavior from them is not honoring them either.
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 .
NEVER involve yourself with a “man” that puts a parent over a spouse.