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Now her husband, 61, has dementia. They aren't bad enough for a care facility. Their children are beside themselves with caregiving. Has this happened to anyone else??

No one should be saddled with more caregiving than they can manage.
How are your sister and brother-in-law "not bad enough for a care facility"?
If they need help with daily activities and it is more than the family can provide, then they are ready for a care facility.
If they are still able-bodied and somewhat independent, an Assisted living or memory care would be the best. There are varying levels of independent Apartment-style living arrangements, with a qualified care staff on hand to check in daily, or whatever is determined in the customized care plan.
That is usually quite expensive. The couple would sell their home and move into assisted living.
If that is unaffordable, they might qualify for a nursing home. Some are better than others. Or consider hiring in-home caregivers through an agency.
If or when either of them is unable to work, they should apply for social security disability income. Once on disability, they will then be put on medicare.
If they are income eligible, then they can also apply for medicaid assistance which will cover medical expenses they can not afford.

Children and family members often help out when a family member is in need, but are not obligated to do so. There are so many other care options to help relieve the burden of caregiving on the family.

And, yes, I think many of them feel alone in this situation. Caring for someone at home is such an isolating experience, and harder than we ever expected to face.
This forum is a great place to share your experiences and get or give advice to others who are also struggling with similar challenges. It helps to feel not so alone.
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loneliness
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Blessed1966 Jul 29, 2024
Should have continued.... "they aren't bad enough for a facility" means that they are still very able to care for themselves. But it's the mental capacity that is greatly reduced, making caregiving difficult and draining. They are "old" in their thinking. Yet, they're not realizing it fully.
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Thanks for all the advice! I'm sure the options have been considered. Yes, it helps to know others have been through....I was hoping to connect with the same.
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Welcome Blessed1966
This Forum has been so helpful to me, just sharing ideas with others in a similar position!
8 years ago, when I started on this journey, I thought, "I want to start a Blog".
But, I had no idea how to start a blog. Or Vlog.
But, I felt I was learning so many things which I wanted to be able to share with others! I had no medical training prior to having to take care of my husband who was a stroke survivor, with considerable brain damage. At the age of 53.
Every day, I was "Googling" answers to my questions! Often, late at night, when he wouldn't let me sleep, as he was groaning all night long! Those days were awful!
I only recently discovered this forum, which allows me to share with others in my position, and to hear what they have tried and recommend! It has been helpful just to know I am not alone! And, I have learned some things which I am happy to share with others who are just now experiencing an unexpected caregiving situation! None of us prepares for this! My husband thought he would die young, from heart disease, a sudden heart attack, or from a stroke.
He (and I) never thought he would survive a massive stroke and need 24 hour care! He is unable to stand, walk, talk, or safely swallow solid food, and is incontinent. He was kicked out of 2 nursing homes due to his uncooperative behavior, which they were unable to control with medication.
So, he was sent home. And I have been taking care of him ever since.
He fights me, pushes me, hits and scratches me when I try to change diapers and help him out of bed. He is not violent or mean. He is simply scared and vulnerable and being protective. It is very hard to deal with. But we have to.
Good luck on your journey.
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My Mom Got sick and had to be Placed in a NH October 2016 and then My brother fell November 7 , 2016 and was in the Hospital than a Rehab . I Took care of Both and Had my brother Live with me for a Year. She Passed January 11, 2017 and he passed October 22 , 2017 and then my Dad went down Hill and I had to take care of Him . Very stressful and a lot of work . Get some support - social workers, therapist , Doctor you can Talk to and trust . Community acupuncture , Alzheimers association , Upaya Zen Center has courses for caregivers . This is a wonderful forum with Intelligent people that can help other caregivers .
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If "Their children are beside themselves with caregiving," then your sister and brother in law ARE ready for managed care because they're ruining their children's lives. Having dementia and a stroke means neither of them are "still very capable of caring for themselves" or else their children wouldn't be beside themselves. Cognitive issues are more draining to care for than physical issues, many times. Your sister nor BIL will realize the burden they are DUE to their cognitive impairment. Of course they can't realize it fully! Whoever is POA needs to realize it and place them in managed care.

Nobody ever expects crises to hit, but they do. When we least expect it. And that's why we appoint POAs to make decisions for us when we're incapacitated to do so.

Wishing you all the best of luck.
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Reply to lealonnie1
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We seem of late to see "Has this happened to anyone else" a lot.
Individual situations are just that. Individual. Just as there are no two fingerprints that are alike, there are really no situations that are alike.
You say that "they aren't bad enough for a care facility" just before saying "their children are beside themselves with caregiving".
Those two statements together honestly make no sense.
This couple truly needs to be in care for their own good if the wife is, after two and one half years of recovery, still unstable. Or, at the least the hubby needs to be in care so that the wife can continue in some therapy and with her own healing.

I am sorry. Not everything has an easy fix. There is no happy way out of what is a dire situation; this is something that is going to have to be addressed so well as it can be without breaking an entire family. I wish you the best. No one can do much toward knowing the fine details in your sitation, but I know we all send supporting care and thoughts to you.
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