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Kellee Asked June 2021

Help. Has anyone had the experience of one parent having dementia and it causing marital issues with the parents due to the stress?

One parent is 81 and is the main caregiver for the parent with dementia. The caregiver is so stressed that they want out of the marriage after 57 years because they can’t handle it anymore. We are working on getting them into senior living apartment with some help with cleaning, meals, and possibly some care for the one with dementia. We are at a loss and really sad at what this horrible disease is doing to our loved ones! Suggestions?

wolflover451 Jun 2021
I would get them into a progressive place where the one parent that is okay can be on their own and the other with dementia can go into the memory care unit of that place. That way the "ok" parent won't be dealing with the every day care of the dementia parent. And the "ok" parent can visit when they want to. It is hard and at 81 its alot for someone to handle. I know, my mother was looking after my dad when she could no longer handle it. it turned out that when dad fell the last time and ended up in ER, we said no one could handle him anymore and he went directly into NH. mom would then visit a couple times a week and could leave when she wanted. i wish you luck.. Check with an elder attorney and get things rolling sooner than later before the 81 year old has major issues.

Llamalover47 Jun 2021
Imho, for them to move into a senior living apartment would not solve the original question - that would remain static. The parent with dementia requires facility living.

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lynina2 Jun 2021
The parent who doesn't have dementia is feeling the stress as anyone would living with and caring for someone who has dementia. When a couple, through a miracle of sorts, manages to live to advanced age, it's not unusual for their needs to differ quite a bit. "Through sickness and in health" doesn't mean that the elderly one who is well and functioning successfully should compromise their own health and safety to care for the other in the home. With a lengthy marriage comes co-dependency and the introduction of new norms should be done thoughtfully. Your idea of bringing help into the home is a good one because it might allow them to live together for a little longer. It's also a good idea because having help in the home will allow both of them to adjust to the idea of accepting help from others. This help often comes with regular clinical assessments so that a trained professional can recognize when added intervention is required. At some point, the needs of each will become disparate. Barring a physical illness/disease or their own onset of memory issues, the "well" partner will not need the advanced care that the other will. In my opinion, it's so important that the "well" partner's needs are not ignored. I don't know much about memory care and how Medicaid figures into it, but it is possible for one parent to continue to live at home while the other is in a nursing home. My parents, who didn't have much income, were able to do just that when one of them required advanced care and the other felt completely overwhelmed trying to provide that care. Consider the number of years your parents have been married and try within the parameters set by finances and availability of services to ease them into their new paradigm if life allows it.

Lizard61 Jun 2021
Please involve all family members who are willing to help. We tried to help my mother in law but our efforts backfired when her husband’s daughters felt we were hurting their Dad(dementia) when we attempted to get her respite care . After 2 weeks of bickering, she decided to stay away from him permanently because of the stress. They ended up divorced after 40 years of marriage and he died lonely in a nursing home. She stays with her son now and I always regret the outcome.
polarbear Jun 2021
Ah, the road not taken...

Lizard- MIL decided to divorce her husband due to stress. If she didn't, she might have died from the stress of having to take care of him, stress from and all the bickering, and from all the illnesses that stress might have brought on, she would also hate him and resent him, then before she died, she'd regret she didn't divorce him to save herself.
Taarna Jun 2021
It may be time to get the parent with dementia into a memory care unit. The caregiver parent can visit but not be stressed with all the concerns of care.

Harpcat Jun 2021
Not every person afflicted with dementia needs memory care from the beginning. My dad who had vascular dementia did fine in AL with medication management and just eyes on him. He went to meals and dressed himself just like you said your mom can do. Plus he socialized with others who were not so out of it. It’s when increased needs for help with ADLs becomes apparent that MC or even LTC is needed. MC is more expensive than AL. To me it sounds as though moving them closer to you in a facility that has the various levels of care makes more sense. Right now she may not need AL with your help and as you said they can hire help to relieve your dad. Even If she needs AL, your dad can usually live with her. It’s always more expensive for two persons vs. just one to live in any IL or AL apartment. I don’t know what their finances are, but I would get those numbers from them, tour a few places alone first and get the costs etc. then if it's feasible approach your parents and see if they will tour the ones you narrowed it down to.
Then will come the part where you sell their home which will also help pay for care, have the estate sale, and get them moved. It's not easy but doable.

Windyridge Jun 2021
Sorry, this post got split up.

I moved them into assisted living. We were fortunate that they could afford the costs.

At the time the place I chose had only a single room available. This was hard on mom having dad right on top if her but he was still quite spry and the staff was very good at keeping him occupied elsewhere in the facility giving mom some alone time. Dad was on a waiting list for their memory care unit when mom died somewhat suddenly. I regret that I wasn’t able to separate them but at the time things had fallen apart so fast I was lucky to get them into care at all.

I don’t know what to tell you about the finance problem. They could apply for Medicaid but that usually is for skilled nursing care. In any event you need to get some separation for them. A divorce is certainly not necessary but your dad needs a break. Good luck to you.
jacobsonbob Jun 2021
I hope your dad wasn't grossly overweight! ;-)
cxmoody Jun 2021
My mother has moderately severe dementia.

My HUSBAND invited here here to live in our home.

In 8 weeks, I was bedridden from the stress.

If he hadn’t relented, my already bad health would have taken a further nose-dive.

That was a little over a year ago.

I completely understand where your father is coming from. Caregivers get desperate.

Speaking reality isn’t unkind. It’s just reality.

Even if their funds are limited, there are ways to split them, and apply for Medicaid for your mother to be cared for in another setting.

There are lots of other folks here who are knowledgeable in that area.
lealonnie1 Jun 2021
Not everyone is ready for the truth, as we see here on the boards all the time. You were bedridden from the stress of caring for your mom with dementia, so you know from where you speak.
Windyridge Jun 2021
Kellee, my situation was reversed. Both parents had some level,of dementia but dads was much worse. Mom was diabetic and had mobility issues. Living at home for them became too dangerous. And dad drove her batty with his forgetfulness and repetitive questions.

We got to the point, and I think maybe your family is there also, where it became an issue of not what the elders want but what do they need for there own good. I had to eventually force the issue and move them

lealonnie1 Jun 2021
Mom needs Memory Care Assisted Living even though she's not completely out of it and in another world entirely! That's not what memory care is all about. Your father is burned out of caregiving to the point where he's talking divorce, so how would moving them into a senior independent living apartment together be a better thing for him??? It wouldn't. He'd still be saddled with being her caregiver in spite of having the apartment cleaned or a few meals cooked! The majority of the caregiving would still fall on him only they'd be in more cramped quarters while your mother continues to decline and require even more of his time and energy. Dementia requires teams of younger people working 24/7 to handle. If you don't believe that, try moving in with your mother for a week while you give dad a vacation and take over his duties for that time span. You'll have a whole new understanding of what your father's been through after that week is up! Until you feel for yourself what your father is feeling, it's impossible to fully comprehend the magnitude of the crisis he's experiencing.

An elder trying to care for a demented spouse alone, especially a wife, is a very difficult thing. It can wind up killing him from stress alone. If he places her in Memory Care Assisted Living and continues living at home, he can go visit her as often as he likes.

The family should educate themselves about dementia and what to expect as the decline continues. Your mother needs full time care and that cannot be provided by your father with you pinch hitting here and there to give him a break. What about when she starts wandering at night and nobody sleeps? And becomes incontinent and needing Depends? The list of needs will get VERY long very quickly, unfortunately.

My parents were married for 67 years when my mother started down the dementia highway. My father finally lost his patience with her and was ready to leave her, too, but he died before he was able to. My DH and I had to go over to their place in AL quite a few times to break up their ugly fights, I'll never forget that. And she wasn't NEARLY as bad as she is now, 6 years later.....which is almost impossible to deal with, living in Memory Care Assisted Living for the past 2 years. I thank God every day for the staff that care for her, and for the fact that my father didn't have to deal with her histrionics all this time. It would have killed him, literally. Or me, if I had to deal with it daily, it's all too much.

Good luck helping your dad make wise choices moving forward.
Kellee Jun 2021
I have to say that I find your response harsh. I am the one that gives my dad breaks. I do know what he is dealing with and what is to come. I am a nurse and have researched a lot about this disease. My grandmother also had Alzheimer’s. We have tried hiring someone to come in the home to help take care of my mom and give him some respite, but when the bill came he decided they didn’t need the help! I asked for kind suggestions not a harsh lecture and to be treated like I’m a horrible person who knows nothing about this. I’m just trying to make the best decision for everyone and unfortunately their financial ability is limited.
sjplegacy Jun 2021
Dissolving the marriage is no solution. What would become of her?Neither is placing them both in an independent living quarters. That wouldn't relieve the stress your dad is experiencing. Presently, his caring is a 24/7 job. Hiring in home care for a couple hours would still leave him with the bulk of the day to get thru. At the minimum, your mom needs assisted living or memory care. She will object. Your decision, however, must be a practical one, not an emotional one.

Dementia or not, the family needs to sit down with your mom and explain to her what the situation is and how her disease is affecting the family. Do not place any blame, and most importantly, assure her of your love for her. It appears that separation is the only solution. Call the Area Agency on Aging in your area to get suggestions. Also call the VA to see what your dad qualifies for.
Kellee Jun 2021
Thank you. I do believe we have to make a hard decision. Financial worries just compound the stress of it all.
Midkid58 Jun 2021
I have a friend who is 'downsizing' from a 3000sf home to an 800 sf 'mom in law' house. Her hubby is grossly obese, uses either a rollater or walker 100% of the time and demands she be the one and the only one to care for him. He would not allow a small 2nd bedroom to be added to the home so she'd have a little private space--and she just goes along with all this b/c she doesn't want to upset him. He is a 24/7 care and has been for about 10 years. I feel for her--but she wond't stand up to him, so it is what it is.

My DH's health is slowly and steadily declining. He spent a week in the hospital last month and they couldn't find anything wrong with him, except depression. He wants to retire and 'go to bed until he dies'. (I realize the depression is a HUGE factor).

I put my foot down and said at age 69 he was doing no such thing. We are also downsizing, but I am insistent on having my own bed & bath and I will not wait hand and foot on him. He would eat all 3 meals in bed if he could, and frequently does. He slept all day yesterday and all day today. Just got out of bed and now has been in the bathtub for 2+ hrs. Then he will go back to bed. This is every single weekend for us.

Unbelivably, he still works FT but is trying hard to retire. I'm not 65 yet, a recent cancer patient and so I HAVE to have health insurance.

If his choice is to go to bed and stay there--we will not live together. I am looking at duplexes, he can live in one side and fend for himself and I can live in the other. He was appalled at my plan, even though I was completely serious. I am NOT spending the last 15 years of my life babysitting him. I've been doing it for 45 years already!

When he was in the hospital and not improving, I was madly trying to get a rehab facility lined up for him--partly to help him and partly to scare him. He needs to see that he will be living in one of these if he doesn't make an effort to wake up and engage in the world.

He does not want to move, but we have over 40 stairs that I have to negotiate every day as part of my routine. He doesn't see a problem.

The STRESS of caring for him and him NOT caring for me during cancer left me with tachycardia, which I have to treat with meds, to keep from having attacks.

I made NO vow at marriage 'for better or worse' and it's been both, as all marriages are.

It seems weird, I know to split up a couple like this---but I fear that is what is going to happen if he doesn't get some psychological counseling. We're not that unusual. And that's sad.
jacobsonbob Jun 2021
At your age, I hope you can enjoy a lot more than 15 more years of life!
MJ1929 Jun 2021
That's a cry for help if I ever saw one, and I don't think moving the two of them to the same (smaller) space is the answer.

Look for a facility with multiple levels of care so Dad can go into independent or assisted living (or he can stay home if he's up to that), and Mom goes to memory care.

Trust me, the stress of caring for your mom WILL kill your father before your mother. You must jump on this immediately.
Kellee Jun 2021
Thank you
Countrymouse Jun 2021
Funkygrandma, it really does depend on the individuals/couples - I've met husbands and wives who were so afraid of being separated from their spouses that at first they wouldn't let anyone into the home to help with care, and you can imagine how that can go. One husband was 98 years old and still battling up and down the stairs with a commode bucket. I think he lost his (younger) wife to cancer in the end, it was very sad.

There are facilities which are very good indeed at accommodating couples whose individual needs are at completely different stages, it's mainly a question of finding one. Only in this case, the caregiver is so burnt out that he doesn't want to continue to be with his spouse at all; I wonder if a couple of weeks' respite would give him a breathing space and help him think it through?
funkygrandma59 Jun 2021
You're right Countrymouse, it sounds like he is ready to be away from her and all the responsibilities. I'm sure it's because he is just so burned out from trying to care for her.
When I saw the term "senior living apartments" in the original post, I was thinking more of like a 55 and over community where care is not provided, and any care needed must be hired in, as Kellee did say that they were wanting to hire all kinds of help for her parents, in this "senior apartment."
Maybe I misunderstood what she meant. One thing that I didn't misunderstand though, was that her mom now requires more help than her father or she can provide, and steps must be taken to ensure the best interests of not just her mom, but her father as well. And if that is placing her in a memory care facility, then so be it.
Countrymouse Jun 2021
If your father liked the idea too I'd be wholly in favour of moving them together; but if he doesn't, you'd better consider a wider range of options hadn't you?

I know it sounds like a silly question, but what aspects of your mother's disease is he finding most stressful? And how long has he been taking the strain?

It could be reasonable to hope that once better support is in place and he isn't dealing with a daily sh*t-storm he will change his mind about wanting to bail out. But that's not necessarily so. Do encourage him to talk openly, listen to what he says, and give him time and space to recover from what he's been through.

How is your mother in herself? Is she very dependent on him for emotional support?
Kellee Jun 2021
That is my hope. Right now he is afraid to leave her alone to run errands or just get away. The place we are looking at is senior independent living but the apartment they would have does not have entry from the outside. They also provide housekeeping, meals, and we can pay for someone to come in and sit with her if he needs to go out. Also, they will be much closer to me and I can provide more relief than I am able to now. Just so worried about him in the time until we get them moved. Moving them to separate places isn’t financially possible.
funkygrandma59 Jun 2021
Instead of getting them into a senior living apartment, it would be way more helpful for your father, if his wife was placed in a memory care facility, where she will receive the 24/7 care she requires, and your father, can get back to just being a loving spouse.
Being a caregiver(especially for someone with dementia)is the hardest job out there, and yes it takes it toll on the one doing the caregiving. Your father is exhausted, and worn out. He needs a more permanent solution than putting them together in an apartment where the majority of the care will still fall on him, since he's already at his wits end.
I believe you need to rethink this, and start looking for the appropriate memory care facility for your mom with dementia, as things with her will only continue to get worse. Wishing you the best.
Kellee Jun 2021
That would be great if they had the available funds to move them into separate kinds of care. She still knows who we all are and still dresses herself, feeds herself, fixes her toast in the morning, etc. I don’t think at this point that she would understand why she is living in a different place than him. She wonders where he is if he’s in another room. It’s very very difficult situation.

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