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Lynn47 Asked January 2021

Can anyone help with my sense of isolation and frustration?

My husband, Richard's initial diagnosis was Primary Progressive Aphasia. He has mild-moderate dementia. Humor helps us through much. Incontinence now part of situation. Moans and groans a lot. Him not me, heehee

sjplegacy Jan 2021
Isolation is one of the most common effects of caregiving. I gave up golfing, fishing, monthly luncheons and almost all socializing. Isolation can lead not only to frustration but depression and other medical issues for the caregiver. You must find a way to deal with isolation by finding respite opportunities. Your local Area Agency on Aging can help, call them. Your church may have volunteers who will spend time with your husband. Call some home care agencies to come and spend time with him to give you some free time. And by all means, look for a dementia support group in your area. They are probably all virtual now but seek them out anyway. There you can share your frustrations with people who share your feelings. I'm glad you look for humor in this journey of support for your husband. I facilitate several support groups (thankfully resuming live groups next month) and besides some sadness, you'll find humor. As others relate their stories, they'll actually find humor in their experience and we all laugh.

Feeling frustrated now can lead to anger and resentment about your situation. Don't let that happen. Determine what your tolerance for caregiving is, what are your limits, when do you need to seek a new “home” for your husband. Yes, that time may come.

And lastly, educate yourself about your husband's disease. Find books on dementia (your library or Amazon), Google “dementia”, and find dementia YouTube videos.

Nanulinda1 Jan 2021
I feel a lot less isolated since becoming a member of a caretakers support group . We are not all going thru the same problems but we know we are not alone in the frustration and isolation . I have learned that I can not do anything about the decline my husband is going thru but can adjust my response to it . I have had to look into my self and draw on things I learned years ago in Alanon meetings. The only one I can look at to change how I feel is “ME”. I have choices. I can sit on my pity pot , or not. I can lament over the sadness I feel or search for help to work thru it. I can do what I can and not beat myself up about the things I can’t . I started to think about finding some time in the confusion and stress to take care of my own need. I share and sometimes vent with close friends. I have arranged for some one to come in a few hours a week to spend time with my husband. When the top of my head feels like it is going to explode, I purposely try to put myself in his shoes and consider what he must be going thru. When he is giving me what I consider a HARD TIME, I have to remember he is also having a HARD TIME. I have also started forgiving my self when I forget all of this and verbally loose my temper.
You are not alone .

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NeedHelpWithMom Jan 2021
Welcome to the forum.

Caregiving is isolating and does cause loneliness, especially during COVID.

Please stay safe. It isn’t worth socializing to avoid being lonely.

Stay in touch with others online. I see from your profile that you are Catholic. We are a Catholic family as well. I watch the Mass on television or online.

Best wishes to you and your family.

funkygrandma59 Jan 2021
From what I read in your profile, both you and your husband are still very active outdoors, in your church and with your friends. Why then are you still feeling isolated? It sounds like you're doing a lot more than most people here. Or are these things you used to do before Covid, and your husbands decline? If that's the case, then I would recommend picking those things that you enjoy back up, as getting out and about, and amongst people we love and care about is so very important, even with Covid going on.
And I'm glad to read that you still have humor in your lives, as that will certainly come in handy when times get tough. As far as your frustration is concerned, and since I'm not sure where exactly it's coming from, I can only say to make sure you're taking care of yourself, by making time for yourself(away from hubby if necessary)and doing little things that you enjoy. Also it's always good to educate yourself on what exactly your husbands issues are, so you will be better equipped to deal with whatever lies ahead. You can like others have suggested too, "Google" local support groups in your area. They can be a lifesaver for sure, as they were for me during my caregiving journey. I wish you the best.

vegaslady Jan 2021
Try looking for support groups that meet virtually. The live interaction might lessen the feelings of isolation.

BurntCaregiver Jan 2021
Hi, Lynn47. This forum is a good place and there's no judgments here. Everyone knows how it is to be a caregiver and this is a great group to vent to and get advice from. Welcome.

polarbear Jan 2021
Hi Lynn - so sorry for your situation. I am bumping up your post so others can see and reply.

I am glad you found this forum. Please stay around and read and comment. You will find us a wonderful supportive group.

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