Follow
Share

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.

Your situation is heartbreaking. I hope your MIL, if healthy and whole, would have never chosen such a life for her son and daughter-in-law. This is no healthy marriage or life. No one, dementia or not, needs or deserves to be treated as royalty, or should be tolerated for raging when they don’t get their way. That’s simply ridiculous. Mom has really trained her son to put up with a lot. Too bad he doesn’t value his marriage as greatly as his mother. She could go into care, she would adapt, and your marriage would likely be saved, even flourish. It’s not like she’s getting superior care where she is, with burned out, exhausted family. The power here is with your husband, to see your misery and understand things must change for the mental health of all. I’m sorry you’re in such a mess. I hope you’ll go by yourself for that long weekend, treat yourself to somewhere nice and let hubby deal with his mother on his own. I wish you peace
Helpful Answer (3)
Reply to Daughterof1930
Report
Caregivingsucks Oct 17, 2024
My husband takes live in their reality to the extreme. Has less to do with her training him and everything he has read about this disease like blame the disease not the person, live in their world, don't fight them. Etc
(0)
Report
I don't understand how your DH feels it's better for his mother to live in a hateful environment rather than placing her in a Skilled Nursing facility with Medicaid funding. At least she'd have a peaceful environment, you'd have your life back, and in turn, your DH would have peace.

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.
Helpful Answer (7)
Reply to lealonnie1
Report
Caregivingsucks Oct 17, 2024
I only recently got hostile towards her. As for the year comment she would not eat the food, let alone engage without someone guiding her through everything. She can also be insufferable. The staff would ignore her or drug her ungrateful a**.

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.
(0)
Report
See 3 more replies
The only way is to set boundaries and to be clear and upfront about what you can and can’t, and will and won’t do.

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!
Helpful Answer (2)
Reply to Suzy23
Report
Caregivingsucks Oct 17, 2024
No she does not have any assets outside her social security. She does have medicaid due to her income. My husband was able to get her a rent voucher that covers 70% of the rent she is responsible for the the other 30.

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.
(1)
Report
You can't go on like this, this is not healthy for anyone, you, your husband and even your mil.

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 😔
Helpful Answer (1)
Reply to Anxietynacy
Report
Caregivingsucks Oct 17, 2024
He has gone for help, issue is he finds help that align with his view. His view was his mother did everything for him, she did not ask for this diease and should be given as comfortable as possible a life despite the diease. This is why marriage counseling always tends to go in his favor. Even his church has this view. Which is hard.
(0)
Report
See 2 more replies
Caregivingsucks, welcome to the forum. Please note that family caregivers (you and/or hubby) who care for a person with dementia, 40% die leaving behind the love one they were caring. Those are not good odds. When what? Let hubby know about this percentage. www.huffpost.com/entry/dying-at-home-family-caregivers_n_592738e6e4b0df34c35ab57f


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.
Helpful Answer (2)
Reply to freqflyer
Report
Caregivingsucks Oct 17, 2024
Is it really that uncommon? Her doctors have told us it is not that uncommon.

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.
(0)
Report
See 3 more replies
Curious, does your husband get tired of the caregiving, does he get frustrated?

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
Helpful Answer (3)
Reply to Anxietynacy
Report
Caregivingsucks Oct 17, 2024
He does not show it, he has stepped up a lot since I told him I was going back to work but that also has created issues cause now she takes more time away from him. Things take longer cause he is doing it himself and she does fight him more when it comes to tasks. She would listen or be more responsive to me. With him everything is a battle but he pushes through but by the time he is done he is exhausted. Before we shared the load.

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..
(3)
Report
See 1 more reply
It sounds to me as thought your MIL is playing a game with you. She “is doing well and very healthy outside of her dementia”. How was she diagnosed with Dementia? What sort of dementia, and what is the expected life span – she has already survived for 10 years, which is a long time. She is only 72, for heavens sake, and “she is healthy as an ox outside her dementia”. She “would not last a year in a basic care facility” is NOT consistent with “healthy as an ox”.

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.
Helpful Answer (5)
Reply to MargaretMcKen
Report
Caregivingsucks Oct 17, 2024
It is not like it has been hell for 10 years it has only really been the last 4 years things have been rough. She has a diagnosis of mixed dementia, we don't know the mechanism behind the why. Her MRI does not shown any infracts chronic or otherwise. Blood work is normal, no diabetes, good cholesterol, blood pressure is perfect.

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.
(1)
Report
HUG
Helpful Answer (0)
Reply to ventingisback
Report

Your husband is putting his mother’s happiness over the vows he made to you , his wife .

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 .
Helpful Answer (6)
Reply to waytomisery
Report

Your husband sounds like Ed Gein. You were really only 25 when all this nonsense started? That’s insane.

NEVER involve yourself with a “man” that puts a parent over a spouse.
Helpful Answer (6)
Reply to ZippyZee
Report

No your husband is not a fair and great man. He should never have gotten married, He is not being fair by putting his mother ahead of his wife to who he made vows. .

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?
Helpful Answer (7)
Reply to Hothouseflower
Report
waytomisery Oct 18, 2024
I agree , he’s not a fair and great man . The husband surrounds himself with others who agree with what he’s doing .
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 .
(4)
Report
See 9 more replies
I lurk around from time-to-time, cause this forum did help me out during a troubled time. I will try to help like others have helped me. You don't make manage in the general sense it is a rather binary thing, Either you make it work or you don't. If he has a certain standard of care he wants for his mother, nothing you say will change that. You can tell him till you are blue in the face and it may feel like he is ignoring you but it is not that he just cannot hear or see what you see and hear. He is caring for his mother out of love. That is a hard thing to get someone to look past. I can guess what you are about to say but doesn't he love you. I am sure he does, but this disease has a way of not only robbing the person with the disease but those that care for them. In this case it has robbed your husband of perspective.

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.
Helpful Answer (5)
Reply to Basictakes99
Report
BurntCaregiver Oct 23, 2024
@Basictakes99

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.
(1)
Report
CareGS, You need to think about what you want for your own life and what you are prepared to tolerate. You can believe your MIL’s ‘medical team’ if you want. They are NOT ‘on your side’, they are recommending what they think is absolutely best for your MIL. And they may not be right at that – being waited on hand and foot is not good for anyone’s temper (as in ‘baby rages’ when thwarted). Very few people, even those much older than 72 and with much more advanced dementia, are waited on 24/7, whether or not their ‘medical team’ think that “someone with dementia should never be alone since you never know when they can have a lapse”.

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.
Helpful Answer (3)
Reply to MargaretMcKen
Report
Basictakes99 Oct 18, 2024
From experience I do think some doctors are guilty of letting perfect be the enemy of good enough. You hear it all the time when people talk about Medicaid based care. In a perfect world everyone would have a one-to-one that is not only present to support them physically but also emotionally at all times. This is not a perfect world and resources are finite.

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.
(3)
Report
So she has a baby rage. So what? Who cares?

I can’t believe you are giving up having kids for this mess.
Helpful Answer (8)
Reply to Southernwaver
Report

CG, I'm wondering if you do stay, and things stay exactly like they are. Which it's sounds like they will, will you have resentments?

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.
Helpful Answer (2)
Reply to Anxietynacy
Report

You are too young and have suffered too long with this. Either he places her in a facility, or you move out.
Helpful Answer (9)
Reply to Oedgar23
Report
Southernwaver Oct 18, 2024
Exactly, he has chosen his demanding, high expectations/poor financial situation mother over his vows to his wife. Nothing more needs to be said really
(0)
Report
See 1 more reply
Op, a question: have you given up on having children or do you still want children? I ask because you are running out of time quickly if you still want a family. (I’m sure you know this)
Helpful Answer (1)
Reply to Southernwaver
Report

OMG. How does someone with no income, other than SS, expect to be treated like royalty? I actually don't know why royalty expects special consideration either. We are all just people and should be treated the same. You must remove yourself from this situation. It does not matter how much you love and admire this husband who cannot see what he is doing to your marriage. If you stay, refuse to do any of the care giving while living there. However, it would be best to not even be there for the expectation that you be a slave along with him.
Helpful Answer (1)
Reply to ArtistDaughter
Report
BurntCaregiver Oct 18, 2024
@ArtistDaughter

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.
(4)
Report
First of all, right now as in today you STOP humoring her and stop catering to her baby tantrums and demands. I did homecare for 25 years. The "baby rage" can be shut down real quick. Yell right in her face when the "baby rage" starts up. Then walk away and completely ignore her. Let her rage and yell until she tires herself out. Just don't do anything for her. Believe me, that usually puts the brakes on this behavior.

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.
Helpful Answer (11)
Reply to BurntCaregiver
Report
waytomisery Oct 18, 2024
This 1000% !!!
(5)
Report
See 19 more replies
I also question the dementia dx because most people with dementia have died by year 10.
Helpful Answer (2)
Reply to Southernwaver
Report
Caregivingsucks Oct 18, 2024
We have been told that is not a hard and fast rule. We were told people can live 20 plus years.
(1)
Report
See 2 more replies
So many responses I will try to get to them. We have been told the average is 4 to 8 but some have lived 20 plus years. Her doctors explained that it is often other health issues that result in death of PWD in conjunction to the dementia.

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.
Helpful Answer (0)
Reply to Caregivingsucks
Report
Anxietynacy Oct 18, 2024
Yes, dementia can last 10 plus years, but there is usually a large decline in those years.

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.
(1)
Report
See 3 more replies
First you are not a monster. You are entitled to you feelings.

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.
Helpful Answer (5)
Reply to BlueEyedGirl94
Report

Caregiver, I understood what you say when this thinking, of not destroying your life over caregiving is not anything that you have heard before.

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.
Helpful Answer (4)
Reply to Anxietynacy
Report
MargaretMcKen Oct 18, 2024
"Faith based advice" rarely comes from people (eg priests) who are doing the caregiving, certainly not long-term around the clock.

"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?
(3)
Report
See 4 more replies
Not all doctors are that candid about an entitiled , manipulative elder as my mother’s doctor who diagnosed her dementia .

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 .
Helpful Answer (3)
Reply to waytomisery
Report
Anxietynacy Oct 18, 2024
Also way, don't we have a thread in discussion that's about , other people always tell care givers to never put them in a facility. I can't find it, but that would be good for OP to read if someone can bring it up
(0)
Report
See 1 more reply
You clearly love your husband and he clearly is a good man.
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.
Helpful Answer (3)
Reply to AlvaDeer
Report
MargaretMcKen Oct 18, 2024
Alva, sorry to disagree with your comments, usually so sensible, but I don't go along with "clearly is a good man". This guy is a wet smack who is willing to sacrifice the world and his wife for Mommy. Not much 'good' about that!
(4)
Report
See 5 more replies
On the bus home you guys have given me much to think about thank you.
Helpful Answer (5)
Reply to Caregivingsucks
Report
Anxietynacy Oct 18, 2024
Take time to think and process everything.
(0)
Report
See 2 more replies
With friends to ‘take her out’, ‘do her hair and nails’, ‘go to shows’ and ‘have lunch every Sunday’, plus you to wait on her, MIL really does have her life organised for no-one’s benefit except her own. Chances are that if she really did have any serious dementia, she wouldn’t be ‘nice’ enough to be getting all this attention. People with serious dementia aren't good enough company to do these sorts of things, let alone enjoy them.

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!
Helpful Answer (6)
Reply to MargaretMcKen
Report
Caregivingsucks Oct 18, 2024
I do appreciate what you have to say, you are right she does have a lot of support around her yeah we have been told our situation could be much worse but for me it is already worse so to speak.

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.
(3)
Report
See 4 more replies
You have gotten a lot of good advice. My suggestion is to move out and set up your own private space elsewhere. You want to get a perspective on your life and where you want to see yourself in five years. Since you and your husband still have the love for each other, you can welcome him to your place with open arms. Also, this can serve as your own private sanctuary away from your mother in law's demands and it will be less wear and tear on your nerves.

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.
Helpful Answer (5)
Reply to Scampie1
Report

Can I suggest that once you have thought about it, you raise the subject with your husband by giving him this thread to read? That way he will be angry with US, not YOU, at least to start with. You can talk when he has calmed down.
Helpful Answer (9)
Reply to MargaretMcKen
Report
ElizabethAR37 Oct 18, 2024
Excellent suggestion, Margaret!
(2)
Report
Your MIL has it really good . I suggest you go get your hair and nails done . A facial and massage . Go to the theatre and lunch , or a concert , museum whatever you enjoy with your own friends as well .
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 .
Helpful Answer (4)
Reply to waytomisery
Report

Ask a Question
Subscribe to
Our Newsletter