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Longtime caregiver looking for support and coping tips

Posted by tim1028 @tim1028, Mar 20, 2022

I've been a member of Mayo Clinic Connect for several years, but this is my first time at this group. Here's my situation: I have been a caregiver for my parents, 4 years for both and 7 years for my mom alone ( she died in December). I also have been a caregiver for my wife for the past two years because of incapacitating Chronic Fatigue Syndrome mixed in with Long Covid symptoms. It has been helpful to see a therapist weekly, but I feel emotionally exhausted and feel like I have little in reserve to give. I work hard to take care of myself as well, but this is easier said than done. My reason for posting here is for support and encouragement from others in the same situation. And,too, perhaps to pick up some useful tools to cope with the difficulties of caregiving.

Interested in more discussions like this? Go to the Caregivers Support Group.

gloro | @gloro | Sep 25 9:02am

To flower1952 from gloro1937 - Hard to accept. One of the facts about caring for a spouse with dementia is that while married, we are not single but alone. It sounds like you are in the early stages where acceptance is resisted. Who wouldn't want to resist a LO daily slipping farther away? A friend's husband had a heart transplant. Through second-hand knowledge, I know how hard that must have been. Yet you survived. We have had back surgeries, joint replacements, life-threatening bowel obstructions, radiation, and chemo that ended with a colostomy. It is not a litany of we can top your drama; it is only our story. What I can offer is not a roadmap back to the sunny days you thought your life would be, but the knowledge that others have walked in your path and found the strength to survive and thrive. The first step is being realistic. Acceptance. There's a reason that the famous 12-step program and grief counseling focus on it. Take it one day at a time with baby steps toward improving you and your loved one's life. It will eventually pay off. Notice that in the previous sentence, I put you first. It is not selfish to prioritize your needs. Find new ways to beat the loneliness. Read more books. Garden. Podcasts. Yoga. Whatever might interest you that will keep you sane. My strategies are creative endeavors and being uber-organized. Who knew that all that neatness would be so satisfying? We write success stories, even as our efforts revolve around another's needs. I think that is the real meaning of love. GloRo

REPLY
Teri | @tsc | Sep 25 2:15pm
In reply to @jehjeh "After months of convincing myself that I needed help caring for my husband with dementia, I..." + (show)
@jehjeh

After months of convincing myself that I needed help caring for my husband with dementia, I finally contacted an agency. Yesterday was our first visit. The caregiver was a very kind and understandings young man. However, my husband couldn't remember us talking about him coming to help me around the house and to be here just in case I needed to leave for a bit. That's how we framed it.

He lasted 45 minutes.

My husband was so angry with me for not telling him (Though we've talked about it daily, even that whole morning) that I had to ask him to leave. He did sweep, dust and fold towels so it wasn't a complete loss. But I still have to pay for 4 hours of his time.

I'm so discouraged and tired today that I'm hesitant to move forward with another caregiver later this week. Maybe afternoon will be better than morning. I'll try again but just needed to vent. I hate to keep burdening my friends with my frustration. Hope you all don't mind my rants. Maybe I'll have good news to report soon. Fingers crossed.

Jump to this post

Sorry @jehjeh, I just saw your post now.
My husband has Alzheimer's and forgets most things. He likes to take notes and keeps a notebook handy though.
Sometimes, he's reluctant to shower and wants to put it off until "tomorrow." This happened the other day. He promised me he would shower "tomorrow," I asked him to document his promise in his notebook, with dates, etc.
The next day, when I told him it was time to shower, he balked. I showed him what he'd written in the notebook the previous day, he read it and then agreed to shower.
The other strategy is writing things he has to remeber on a whiteboard on the fridge so he can refer to them during the day and keep refreshing his memory.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1 7:57pm
In reply to @flower1952 "Because of my husband 's mens he goes to bed at 7:00pm then wakes up about..." + (show)
@flower1952

Because of my husband 's mens he goes to bed at 7:00pm then wakes up about midnight. He cleans ,watches tv, and plays games. Then in then morning he sleeps at 10:00am. That's my life. It's almost like being single again. I have no idea what to do. It wasn't this bad twenty years ago after his heart transplanst.

Jump to this post

@flower1952, are you referring to your husband having MENs as in Multiple Endocrine Neoplasia (MEN)?

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