Responding to article on caregiving restoring "bond"...

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This was a lovely story, however this wife, though she certainly gave up a great deal to care for her husband, she did so willingly and made this decision though she could have afforded to have regular professional help. I applaud her commitment. However, that scenario is totally different than those of us who are forced by financial circumstance to become 24/7 caregivers with little possibility of respite, as well as the awful realities of caring for a loved one with severe dementia. The constant need to "watch", to deal with insults, with accusations, with personal attacks, with day to day, hour to hour, minute to minute changes, the nearly terminal exhaustion does not create any kind of a positive bond. It has destroyed nearly every warm or fuzzy feeling I ever had. Add to this the severe abuse I was subjected to as a child by a stepfather, and when I see the same hateful look in the eyes of the man I grew to love and trust, my fear rises up like a horrible nauseous cloud. I feel no bond. I just want escape. I do not have that option. I spend my days and nights serving his every need, cooking, cleaning up after his incontinence, pitying him, trying to utilize every tool I know to be a more gracious, loving, understanding spouse, but the unrelenting anger and demands drive away my every determination to be one of the people I read about here - that courageous, gracious, forever loving, long-suffering wife I read about. I have moments and he has moments when the man I fell in love with shines -so fleeting -as I think "dear God!", there he is! And then as quickly, that moment is gone. I reach out and touch him, perhaps give him a kiss and a moment later I am back in the dark hole that is created by this horrible illness. One family member comes by for about 3 hours twice a month with her two big dogs, and I prepare lunch. He brightens up, they chat or sometimes go out to lunch or to the hardware store for about an hour and then she is gone, along with her two boisterous dogs, and I am again thrust into the ugliness of his anger. No, there is no bond.

11 Comments

The more I read, the more I think that some people with dementia behave in a way that causes what would be a co-depended abusive relationship if they were were not suffering from dementia.
I have no idea what article you are talking about, is it something on AgingCare or something from elsewhere?
As for the premise in general - I considered my mother to be a friend as well as a mom, but caregiving caused me to doubt everything I thought I knew about her. When I finally decided that for both our benefit she needed to be in a nursing home I posted that I hated everything about her, it was burnout X10 ☹️. Since then I've been able to find some of the love that had been buried under the weight of caregiving, but my life post caregiving has been changed irreparably.
The article was posted on this website, came in my email today. But the condition was not one of dementia, the title was about caregiving creating a new bond. It was true for them.
I had to check my deleted mail to find it

www.agingcare.com/articles/caregiving-for-spouse-151104.htm

The thing that strikes me most about the article is that they were both able to work together as a team to manage his illness, unfortunately in many relationships or if there is dementia teamwork is never going to happen.
She1934 it sounds like you are on a NEED A HUG day. So chin up. We are here. and ((((((HUGS))))))
Where is this lovely story? Or was it a show?

I'm often the exception on this kind of topic, but that is worth hearing, too, don't you think?

We had a good, equal marriage but after 25+ years I was feeling like Coy wasn't very interested in me. Often I said, "if you would listen when I talk to you, you would know where we have to be in an hour!" There was no animosity or conflict but the relationship seemed to be deteriorating. Then he was diagnosed with dementia. Holy cow! Is that what has been going on? His neurologist said the part of short-term memory that was broken for him was intake. Often what he heard or saw didn't make it to his brain. That description fit our situation perfectly. Coy would listen to me, might even agree with me or make some comments, but later it was as if the whole conversation didn't happen.

What a change for me to recognize that this was something Coy couldn't help, rather than a loss of interest! Poor dear!

I was able to care for Coy at home for ten years. He died in our bedroom, on hospice care. That was a tough ten years for both of us. But I am glad I took the journey with him. It definitely deepened our relationship, and formed a bond on a more intimate level.

Do I think everyone should care for their loved one at home? Absolutely NOT! Do I think those in my support group who eventually had to place their parent or spouse in a care center were just inadequate caregivers? Oh my heavens, NO! I was lucky, and I think these things contributed to my luck:

1) Our relationship was good before the dementia. I read some of posts here and think, "why didn't they divorce or detach years ago?"
2) All 3 of my stepdaughters were supportive and told me again and again how glad they were that their dad had me in his life. Stepfamily conflict can be poison.
3) Coy was physically well enough to continue to enjoy some activities with me. A wheelchair became a prized possession that we seldom left at home. We traveled by cruiseship, sleeper car, plane, and car. I can't say any of these trips were "vacation" for me but they did contribute to the bonding. Many people in my support group traveled with their loved ones -- one I remember went to Europe (with lots of help.)
4) I grew up in large, functional family. Not perfect, of course, but not damaging to my ability to do caregiving.
5) My sons were very helpful.
6. My sisters were very supportive.
7. Early on his wonderful doctors tried to find solutions to resolve troublesome symptoms. We did not have to deal much with terrible anger or depression, etc.
8. I did get some respite while Coy went to Adult Day Care a couple days a week, and later with a PCA at home. Looking back I think this is an element I should have worked harder on.
9. I knew without a doubt that this was my choice. I knew none of our blended family would criticize if I placed Coy in a care center. Friends and neighbors would have been supportive. It is helpful to know there is an alternative if things get too bad.

I would guess (no empirical evidence) that the more of these things you have going for you, the more likely you are to enhance or develop a strong bond.
cwillie, teamwork -- that sums up a lot of my points. I never thought there was anybody against me. The ones that were actively supportive were at least not negative. Coy's healthcare team was amazing, called me a care partner and treated me that way. How lucky was that?

And after the first couple of years, Coy accepted his limitations and was glad we were a team. If that hadn't happened, I think a care center was in his future.
She,
I remember that post. I thought it was fantastic for the wife to feel that way but highly improbable for most couples.

Unfortunately, your situation seems to be the norm.
It must be heartbreaking to watch the man you married turn into another person. After a period of time, you're married to someone completely different who isn't as easy going, argues frequently, gets angry more often, raises accusations, etc.
I can't even wrap my head around that. (It's my mother who has dementia.)

This sounds very cliche but it really might help to talk to a therapist to sort out your feelings. Often therapy can bring new views to light. You also may explore options you haven't thought about.

My only child is a heroin addict. He, too, has changed and is not the boy I raised.
After I found out 5 years later, I started trying to "fix" his addiction. That lead to many fights. He has used me for money over the years by lying to me. I have been screamed at and called names.
I have had to back off (or disengage) from our "relationship". I don't know THIS son. (You don't know THIS husband.) I can't fix him (neither can you). It still breaks my heart (I'm sure yours too), so I back away (I think you have also).

We are "protecting" ourselves, in a way. The situation, as it is, hurts- so we back away to escape the pain it causes. I feel, at this point, indifference. I'm saddened by that. No mommy should feel indifferent to their child. (Do you feel indifferent to your hubby?)
But I can't be hurt by him anymore. I've got my protective armor on. I'm on the defense. We don't talk anymore because he doesn't want to talk to me. I don't want to talk to him when he's high.

I don't know whether you agree with my analogy but that's how I see it.

Don't feel bad or guilty. We're just trying to protect ourselves from the hurt that these two diseases cause.
This is one of the most painful things a person can go through.

Do something nice for yourself. Treat yourself to something special. Take time away (even if you have to impose on people) to get out of the house by yourself every week.

I don't live with the source of my pain (son) like you do. But I know the thankless job it is to try to care for someone who doesn't seem to give a care that you're trying to help him.

You and I are responsible for our outlooks on life. We can not let these difficult people steal our joy of living. I've seen it happen. It reduces the carer to a shell of who they were.

If things get too bad, maybe a facility (memory care through Medicaid) might be a better choice. Not everyone (like the perfect wife in her post) can have a wonderful relationship with a demented spouse. He (the husband) seemed to be an angelic Alzheimer's victim. Those are rare.

Don't feel bad for how you feel. You can't connect to someone who can't connect to you. Love yourself anyway.
(((Hugs)))
SueC1957, I don't think the husband in the story had dementia. It was some kind of rare infection. Dementia --or addiction--or anything that impairs thinking and emotions is a totally different ballgame. Well, some things are the same ... respite is needed in both cases.

Thank you so much for sharing your heartbreaking story. I think the analogy works as far as forming bonds go, Sue.

I never promised Coy that he wouldn't be in a care center, and I would indeed have placed him if that seemed appropriate. Instead I promised him, over and over that I would never abandon him, I would always try to provide the best care available, and if it turns out that is a care center, I would still be his advocate and see him often.
I deeply appreciate the comments and the suggestions and the encouragement offered. Today was a particularly difficult day and I just could not seem to turn it around, as husband wanted to go onto the computer,(he cannot even use the tv remote without Help), and was so angry at me, swearing and telling me to get out. I try to get the mail before he does because we get so many offers of loans, charitable donation requests, and other things we cannot possibly do. He believes that I am stealing his retirement money, because I cannot get him things sometimes because we are either overdrawn or still have bills to pay, and the anger goes on and on.
This is the way it has been for the past two years, and my spirit is broken.

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