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The Mirage of Caregiver Support

Caregivers: Dementia | Last Active: Nov 13, 2023 | Replies (32)

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@coping123

Dear Bill2001, Time to try some different tactics perhaps. We are dealing with a long term, moving target. Resources come & go.

1) Church: I belong to an extremely small church which if one of many in a very small community. I have been very transparent with everyone on the challenges. And they are very supportive. Our pastor even agreed (on short notice) to drive my husband there 5 hr round-trip to his cancer treatment one day when both the caregiver & me were completely burned out & frustrated. Please consider taking to church leaders about the lack of support - especially concerning prayer. If they are unresponsive perhaps prayerfully consider a different church for this season in your lives.
2. Your local Area Agency on Aging should have programs that can help with respite care at a minimum. They should have grants - about $600 per year - that you are eligible for. Every little bit helps.
3. Unfortunately we have a culture of “fix it”. Unless someone is dealing with a LO with a chronic illness they have no clue. I am blessed that we have an in-person dementia support group that meets once a month in person. At this point - based on my time on this journey - I’d start my own if there wasn’t one. I also belong to an online support group that meets via zoom monthly. It consists mainly of caregivers who live in a much larger community & have access to many more resources. But it did give me ideas of services to advocate for.
4. Area Agency on Aging respite care funds could provide resource for you to pay someone. It can be difficult to find the right person - another reason for strong prayer partners.
5. Covid made Meals on Wheels much less viable as a support option. I’ve had better luck having a local restaurant deliver a meal I’ve ordered. But you’re right, no wellness check with this option.
6. How I wish adult day care was an option in my community. They’d have their hands full for sure. Instead, if either you or you LO is a Veteran VA has sung amazing programs that can help. You need to connect with the right person which can involve a lot of research.
7. I’ve made a commitment to keep my hubs at home as long as possible. He’s a Veteran, but doesn’t have a service-connected disability. But VA has a Veteran Directed Care (VDC) Program. Based on his current needs there program pays for a caregiver 7 hrs a day, 5 days a week. It’s assessed monthly & every 3 months there’s an in-home assessment. God brought the perfect caregiver at the perfect time - HUGE blessing. I’d probably be dead without her just from caregiver burn-out.

Sometimes we have to recruit the soldiers & train the horses ourselves. We build our own cavalry. It requires a lot of energy to keep checking into resources & eliminating the dead ends. But the sweet victories are what can keep us going.

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Replies to "Dear Bill2001, Time to try some different tactics perhaps. We are dealing with a long term,..."

"Sometimes we have to recruit the soldiers & train the horses ourselves. We build our own cavalry."

Very well said.