Any advice on the stress being the caregiver of a dementia patient has on a marriage?

No, you are NOT wrong to feel neglected and alone because honestly, you ARE being neglected and alone. I am sorry that your husband's sister is going through this, and it is commendable that your husband stepped up to take care of her, which seems to be out of guilt (sister took care of him long ago). However, it is all being done without your initial consent and that is what a marriage is - both parties have to discuss big life decisions and come to some sort of agreement or compromise - BOTH parties involved. Your husband didn't abide by the marriage 'contract' and still is not because he isn't considering YOUR feelings, as his wife, and doesn't want to work at the marriage - only wants to work at taking care of his sister.

Taking care of someone 24/7, in any condition, puts an enormous amount of stress of the caretakers and their families. And if not everyone is on board, then that stress will create resentment and simmering anger, neither which are healthy for an individual nor a relationship.

Imo, since your husband doesn't want to change, and is not listening or hearing you (and instead turning things back on you by saying you are not being supportive), then you have to take charge of your own life. I know that some say to go on a mini vacation by yourself - unfortunately, you will have to return to all of this unchanged. The only person you can change is yourself.

Since you didn't agree to this arrangement (no one asked you or consulted you) give yourself the permission to live your life. Stay married if you want but Start growing your own life by doing outside activities that you enjoy - learn new ones where you will meet new people or pick up ones you used to do but haven't in a while. Join a bookclub, or two, or three. Take exercise classes or find a walking buddy and start doing miles. Find a new hobby. Volunteer for a cause that means a lot to you. Maybe even find a part time job. Anything and everything that will get you out of the house. Your husband is the one who decided to do this all - so it was his decision and his choice (forget the guilt) and it is a decision he will have to endure and work with.

I know this may sound cold hearted, but, if you continue to be in the current environment without anything changing, it will greatly affect your health and mental well being. This type of stress can cause heart attacks or strokes, and if something happens to you, the question I ask is, with your husband taking care of his sister, how will he take care of you at the same time? Or if he gets a major health issue, who will take care of his sister then?

My story: Aside from all my problems with my 95 yo parents that I post frequently about, I have a developmentally disabled SIL who is about age ten intellectually. She is 74. My husband is 72. It was my MIL’s grand plan that she live with her siblings after she and FIL died. Never made any trust provisions for her care. Nothing. My husbands brother inherited the family house after they were gone.

SIL has been living with BIL and his wife for ten years now. BIL’s wife does not want her living with them any more. They have been pressuring us to take her.

I gave my DH a choice, her or me. He chose me for now. He had to tell his brother I would divorce him. I would not allow her to come live with us. I don’t have the bandwidth to take this on, on top of everything else. Plus I don’t want to sacrifice the remainder of my life to her care.

I don’t feel guilty about forcing him to make that choice. I was totally prepared to move on if I had to. But I really don’t know how it all will finally end. My husband has a lot of guilt about doing this. He was raised in a tight knit Italian family and this is hard for him.

MarieSavanna2: It's due time for other family members to step up.

You should seek counseling for both of you but go alone if he won’t. You both need to learn how to set boundaries and ask for help. He needs to lose the idea that he “owes it to her”. Guilt is a man made emotion and has no place in deciding how best to care for a loved one. I wish you the best…

Try to get counseling with your husband and, set appropriate healthy boundaries for self care and preservation of your marriage in the midst of this family care need. Confer with pts PCP and get referrals for in home support and outside respite care so that you and your husband may have respite from the intense dynamics of such care.
Practice good self care !

I am sorry you are being put in this position. I am on the opposite side. I brought my 94 y/o bedridden mother to my home because I am the only girl and someone needs to change her. I also felt that a facility was not a good choice because the rehab/nursing home she was in did nothing but cause the start of a bedsore and because we were in the middle of COVID. I am aware of both the high cost and the corresponding low staffing and inadequate care that IMO most facilities offer. My mother was a victim of that “care.” That said I think it is important for the spouse who is directly related to the patient to be considerate and “there” for the non-related spouse. It is a difficult juggling act for sure, and sometimes the vow of “for better or worse” just doesn’t cut it. Neither of you foresaw this situation and you did not sign up for this living situation to be your “golden years” of retirement. Neither did my husband. I try to remember that by only involving him in a care activity if I have to or he offers (which he does), and by finding time for him - sometimes at the expense of attention to my mother. I have hired an aide to help me five days per week at home for 6 hours. That frees me up to be me and also to be a spouse. And I have created a resource network of part-time aides I can call if we decide to try to get away for dinner, a movie, or a few days of respite. If your husband can’t or won’t be sensitive to your needs then if it were me, I would begin to live my life, go when and where I want to, and let him figure out what he wants his life to be. I’m not saying to be intentionally mean or refuse to lend an occasional hand if he asks, but, by shutting you out, he has not earned the right to make you sacrifice your life. If it was me, and it got really bad, I would likely go for divorce. He has a choice - so do you. Life is too short to let someone else mess your life up to the point you are a distant second fiddle and have no life. If he can’t find time for both of you then he isn’t up to this job. My husband knows that I am working hard to make our home situation work. He also understands that it will NEVER be a perfect balance and he accepts that. Finally, he knows I value his happiness and our marriage and if a hard decision has to be made, it will be in favor of our freedom to have the retired life we wanted. He also knows that I don’t want to make that hard decision lightly - especially if I can find an acceptable work around. I think you and your husband need to chat - and hopefully you two can come up with some acceptable plan. If he won’t meet you halfway, then make your own path.

Fear, obligation and guilt, google those three words. Your husband is in the FOG.

If you are ok vacationing without him, may I suggest a cruise? There is no sense in you having to suffer and not live your life because your husband did this.

A family appointment with an Elder Law Attorney and a Geriatric Psychiatrist should make a big difference in your caretaking efforts. A couple's appointment with a marriage counselor would be the icing on the cake...................then plan a vacation.

I like the idea of a week of vacation, you alone, to recharge or have a blast. Let him come to an empty house every night. While you recharge your batteries and think things through. Might be just the thing you both need.

There are times when we have to make sacrifices and defer our own pleasures for family, but it seems that you have already been doing this. A lot depends on your sister-in-law's finances, and perhaps on yours and her other relatives. Can she afford to hire a caregiver to come in to help her and give you and your husband a break? Will her family (sons and brothers) kick in and pay for this help for her if she can't afford it? Your husband and you are very good family members to take all her care on yourselves. But caregiving can be stressful and you need to give yourself breaks. Your husband should try to spread the responsibility around to her sons and other family relatives. Are they close enough to participate in caregiving? Can they help financially? Has your husband's sister assigned POA (powers of attorney) for medical and financial matters? Are there assets that can be sold to pay for skilled care? Talk to your husband about the possibility that his sister could live for many more years. Is there a point where he will agree that it's too much for the two of you to handle on your own? What if her condition declines and she needs more care? My mother with advanced dementia could do nothing for herself. She couldn't walk or eat by herself. She needed to be fed, bathed, dressed, transferred from the bed to the wheel chair, or geri chair, etc. she passed away at age 98, having increasing dementia for approximately 7-8 years. Do you both have the strength and knowledge to handle her care if it gets to that point? If an honest answer is "no", then you both must consider moving her to a memory care facility with skilled staff at some point, and you should have it as your backup plan. It's difficult to discuss these things with someone who feels obligated to help a family member. Can your husband think of it another way, that no adult relative should expect that much of a sacrifice from their siblings, giving up their own lives and activities to long term caregiving. There are memory care facilities that can give his sister excellent and appropriate care for her abilities. The facilities have trained skilled staff who know what to expect with dementia. She may meet people there that she can be friends with. That happened to my mother at one stage of her dementia where she found a "buddy." All the best to you and your husband and family!

The other brother and his wife need to help 50% of the time.

Your SIL can go back and forth between y'all. At 69 years old, she can live for years. (I've been caring for my mother since 2006 - she's now 96 years old and still going. I don't have anyone else to help - they're all dead now.)

And I'd recruit her two sons to help out as well in whatever way they can.

As long as your husband is willing to provide 100% of the care for the Sis, then everyone is going to let him do it.

It's up to him to make the changes.

Your husband has a responsibility to YOU and your marriage. So if he refuses to divvy up the care among the available family members, I agree 100% with the others here - minimize or eliminate your part in the care and go pursue your own interests.

Peace

Some people just won't consider nursing homes for relatives who need them, but seem to have some need for the virtue of caring for them in their homes instead. My SIL and her husband took in her mother, and now they complain that they need time off and we are the default caretakers. I'm sure they resent that we don't share more of the load, but it was their decision--without consulting us--to take her into their home instead of a nursing home when she became unable to stay alone. I don't want to take care of her (she's never been my favorite person and is even less of a pleasure now), but have for several weeks at a time more than once so that they could go on vacations, etc. My husband doesn't enjoy having her here either, and is little to no help in caring for her when she is. I feel that this would not be necessary if she were in a facility, so since SIL created the situation that makes her need a break it should be her problem, not mine. The last time we kept her, I made my feelings known that she might even be happier in a home where she would have more social interaction and the part of her care that is true nursing (cleaning up bathroom accidents, etc.) are beyond what a family should need to do. I bragged on my own mom who has told me, "I love you far too much to ever want to live with you--and if I ever resist a nursing home, just ignore me and put me there anyway." My mom understands that a marriage is damaged when a third adult lives in the home--especially one who needs care and attention, so she is adamant in her desire to NOT do that to her children. I feel that SIL and husband somehow see themselves as superior and due great praise for their altruism even though all they do is complain about being tied down and the irritations of caring for her. SIL does provide excellent care, and BIL says he would never have agreed to have her there if he'd known she would live past 6 months, that his first waking thought is hoping she'll be dead in the morning, and that he's considered moving out...so he's on board to have her in a facility...but SIL won't budge. Since she is 96 yrs old, she won't likely stay in a nursing home many years, and I think it is affordable considering that. I know they think we aren't doing our fair share, but truthfully I don't feel guilty because they took all the decision making out of our hands when they took her in. So, I feel that dumping her on us when they want a break is really not fair, since SIL made the choice to not have her in a facility. If your husband made the decision without your input to take in his sister, you don't have to be a nurse. Hire someone to come in to do her physical caretaking, get meals on wheels, find a daycare for her for weekends, hire a housekeeper, etc., and make it clear that this isn't your problem or responsibility and that you are not available to be a caretaker. Just having that extra person in your home is uncomfortable and is detrimental to your marriage, and he needs to know that. Perhaps the expense of hiring help will sway him? But, don't blame other relatives for not doing it if your husband took that decision from them as he took it from you. They might even prefer she was in a facility, but are letting him do it because he insists.

I understand how your feeling, I have 2 sisters and 2 brothers who want nothing to do with mom during her time of need. No help what so ever, I feel the least they could do is help money wise. We have been married 43 years and are now at the point where we are free to do as we want but now we have become caretakers of my mom with dementia. We are struggling to find a way to get away for a weekend alone since we couldn’t for our anniversary or birthdays. She can not walk any distance without getting tired and grumpy so we avoid going out to do the things we love to do as a couple. I need some serious advice, I would hate to lose my 43 year marriage because of the stress.

I would approach this in "a plan for the future". Long term plans to allow for the inevitable twist and turns. As a "team", the focus is preserving the hands on caregiver(s) for what might be the long haul. A non confrontational discussion to work towards a gradual shift to delegation of duties(?). When you are in the trenches, you deal with crisis after crisis and you can't think straight: "How long can I do this?"

I always think a conversation like this should start with you giving an example of role reversal. What if my sibling needed care and I moved them in and changed our lives indefinitely without taking you and our relationship into consideration.
Wouldn't you feel slighted? Wouldn't you feel neglected? When does this end? What is the plan or have you just decided on your own that this is what the rest of our lives will be? I thought we made life changing decisions together as husband and wife...when did this end?

Leave him to look after her 100% say that you are too tired to continue your support ends here. Then organise a trip away for a few weeks with a friend. Go enjoy your life,you did not choose this and it is unfair of your husband to expect you to put your life on hold until his sister dies. Alternatively ask your in laws to do a week a month, so as there are three you only have to sacrifice a week a month of your life.

I wouldn’t take care of any family member unless I had POA. I’ve done it in the past.

Without POA, I had no say in what was spent for caregiving or things needed by the patient or help around the house. Never again.

Start backing off from all the helping. Do you both work outside the home? Don't ever consider quitting your job to take care of HIS sister.

How are you guys supporting yourselves?

Who works outside the home?

Why doesn't her sons help ? They should give you guys a break so you can go on a vacation for starters.

Your profile says your sister in law is 42. I hope that is an error. Thats sad if she has dementia that early. It also means she could live another 20 or more years.

I took care of my nephew when he was young. I am like another mother to him. I hope he doesn't feel he has to take care of me. I never even thought of that. Besides my nephew has his hands full with his own mother ( my sister who is very ill) I also don't want my own kids to take me in their homes either.

Does your sister in law have any money to hire care to come in at least part time, so you and hubby can have a break and spend time together, get lunch, go to a movie or for a walk? Is there an adult daycare by you that sis could go to? Who has POA? That is who is responsible for her.
How much care does she need? Perhaps assisted living or memory care will be needed soon. Does sis have her own money for a facility? When relatives praise about what a good job he's doing, that's because they want him to keep doing it without their help.

I'm sorry you are in this situation . Would hubby consider going to marriage counseling with you? Maybe they can talk sense into him .

Your husband is NOT ‘paying it forward’. That means you help someone, then they help someone else in the future. Sis is NOT going to help someone else in the future. DH needs to look at why he is even trying to ‘pay it back’ to Sis, and whether that’s appropriate. We don’t and can’t ‘pay it back’ to our own parents – parenting is a true ‘pay it forward’ thing, so why ‘pay it back’ to Sis?

Did Sis expect it when she helped to take care of him as a child? Are the other family members ‘paying it back’ for what they received – from Sis or for anyone else? How do they ‘pay it back’ to you and to DH by showing gratitude, in practical terms, not just words? How does DH show gratitude to you for what you have done for him in the past?

It might help if you stop what you do for Sis, and say what you want from DH. How many hours a week being a husband to you? What outings for both of you? It should be at least as much as he devotes to Sis.

This situation will only get worse. It’s a simple choice. Wife or sister

This should never happen - a husband putting his family before his wife. That's the truth of it.

Husband is quite comfortable standing up to you and even fighting with you over this. Yet he apparently won't insist that other family members pitch in to help. Why does he have a spine when it comes to you, but it disappears when he prefers not to stand up to sis's sons and sibling and his wife?

You have sacrificed, but how long will it go on? Will you be expected to sacrifice when it comes to his brother also? How many demons are you expected to carry on your back?

Feeling neglected and alone in your marriage is one of the saddest things that could ever happen to you. I'm so sorry you have to live this way. You could seek marriage counseling either alone or with husband. But I don't feel that it would really help.

Perhaps you could travel alone or with friends. There are wonderful tours where a single person can feel comfortable and enjoy good company. Start a Lunch on Tuesday group for friends who enjoy getting out. Find a way to leave the house often, even if it's just to go for a drive. I'd want to be as far away from this household as often as possible as much as possible. Go to movies by yourself if you have to. Make it clear that you're not going to let his devotion to sis bring you down. Stop helping with appointments, meds, cleaning her room. Let husband get a taste of full hands-on care for sis. You don't owe her anything.

Anyway, why can't she go live in a memory care facility? Does that ever come up?

Good luck.

My husband brought MY mother in.

In 6 weeks, I was bedridden from the stress.

I went away for a week by myself.

When I was away, he researched Memory Care Assisted Living.

It was either that, or I would have been off to the looney bin. Not kidding.

Be strong. Insist on taking back your marriage and your home. Caregiving has to work for ALL INVOLVED.

We will cheer you on!

Your husband is abusing you, frankly. You brought a bit of this on yourself, by doing things for his mother that are most asssuredly NOT your job. Once you started, of course more was expected. And now, you can’t extricate yourself without an ugly scene. Better to have never started!

But, you did. So, your choice is to make your husband mad, or be a resentful, put-upon slave. Advice to others: DO NOT GET INVOLVED in the first place!

This isn't a sister problem. It's a hubby problem. The two of you took in his sister not agreeing that it is the right and proper thing, and something you both wanted and agree upon.

My own brother got a diagnosis of Lewy's Dementia. There was a single moment when I said to myself "This is the best person you every knew and ever WILL know. If you were worth the powder to blow you to Hades you would move from Northern CA here to Southern CA and take care of your brother until he dies".

As I said, for one single moment.
It wasn't what he wanted or expected.
I would have been leaving my dear partner of 36 years, himself in advanced age.
And no, we would not have taken my brother in to live with us as I spent my loved career as an RN and I knew good and well I could NEVER do it 24/7, and would have absolutely NO RIGHT to put it on my partner.

We all make choices. To me your husband made a difficult choice and to me it seems poor decision making that may sacrifice the last solid and good years of your life on the funeral pyre of his sister. It would KILL me to think my daughter might do this to her marriage. She is nearing retirement and her hubby already retired. It would be--and she knows this--to my mind, obscene to do this.

I assume you discuss this with your husband. We cannot make decisions for you or for your marriage. That's in your hands. I think this, however, is an utter shame, and very sad. My heart goes out to you.

I feel every ounce of your pain.

My DH actually retired earlier than he wanted to b/c his sister had taken the care of his mother on 100% and was burned out.

Instead of stepping up and saying "Ok, we can't do this, mom needs to be moved to a SNF or the like"--he said "I'll retire and help out as much as necessary."

Didn't talk to me, didn't even put me in the equation! I was NOT on board, not then, not now. It has been horrible.

Family meetings are the 3 of them, DH, SIL and OB. Oh, and SIL's hubby. I have no voice, no say and no appreciation shown to me for holding down the fort for the past 10 months while I watch my DH get angrier and more snappish by the day. DH is showing signs of mental breakdown himself. Luckily he does get out and golfs a lot, but as far as spending time with me? Forget about it.

MIL is a PITA to care for. He complains incessantly about her, but does nothing to change the dynamic. He actually has POA and could legally have her moved to a NH. He never, ever would.

He, also, feels that he owes this to his YS, even though he doesn't think having MIL at home is a good plan.

I am also constantly told I am not supportive or helpful. But I also am not allowed to be either. Just shut up and go with the flow.

I recently toyed with the idea of leaving him--not to divorce, but just to get away from this dynamic that hangs like a cloud over us. Decided against it, as our home is large enough I can literally go all day long and not see or talk to him.

I no longer even ask him how his mom is, or what's going on. Maybe that's what you need to do, too. I've never influenced my DH to do anything positive concerning his parents. He does not 'hear' me.

You have every right to be as angry as you feel you need to be. At some point, you'll either accept it and figure out some way to live with it, or you'll leave, physically or mentally. I am leaving 'mentally'.

Hang in there...that's all I can say. Feeling hurt and betrayed and ignored--all normal feelings. I'm so sorry for what you're going through. You sure aren't alone.

I have found that the 'silent' treatment is very helpful. I'm not mad, I'm simply quiet. That drives DH NUTS...but I can remain silent for hours on end and he can't be mad because I'm NOT doing anything to irritate him.

(I took care of 3 of my siblings, basically raised them from the ages of 4 to 17--I most assuredly don't feel like they owe me ANYTHING. Live good lives, be good people...that's all I wanted from them. Your DH has some misplaced sense of need to care for his sister. It's admirable, but untenable. It may come at the cost of his marriage. My DH would choose his mother's care over me, so the 'threat' of a divorce would just make things worse. I don't understand it. I'm sure you don't either.)

I can only wish you the best as you navigate this. His sister is likely to still have many years ahead of her. At least I think my MIL cannot last another year.

((Hugs)) you need them!!