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The Last Word

In my last word on respite for a while, I could not say it any better than the caregiver who sent the following letter last week. And actually, that's a good thing.

In 2005 my husband turned 60 years old and was diagnosed with Lewy Body Dementia. For the first time in my 51 years, I was frozen with fear. Absolutely frozen because as a hospice social worker, I knew too much about what my future would hold. Those fears were amplified by well-meaning friends and family asking: "How will you afford to keep him at home? You'll have to put him in a nursing home when he gets bad, won't you."

Well, I have worked full time and come home to care for my husband for over 2 years with no respite beyond a few hours at a stretch. The nature of his disease requires someone be trained to address a multitude of cognitive, emotional and physical needs. This is beyond what family and friends are capable of handling. In addition, we live in a rural state and respite providers are just not available.

I see my hopes of keeping him at home dimming quickly. This is not due to his needs increasing, any future needs he may have can be addressed in a home environment. It is dimming because I can't endure the pace of my life much longer. These are the times I am reduced to tears. I am full of fatigue and recognize that there are times when I can't think clearly.

So, how did I achieve respite? Well, let me just say "It takes a whole community to give a rural dementia caregiver respite." First, there was my persistent, generous and loving sister insisting on taking me on a Caribbean cruise - all expenses paid. There was my supportive brother paying my air fare and all other expenses. There was an old friend who just opened up a Board and Care home. Then there was my husband's devoted and competent caregiver offering to assume responsibility for his needs and my home in my absence. There were all our family and friends who allowed me to schedule them to check in with my husband and take him out every afternoon/evening. The cruise seemed "do-able". So, the caregiver picked my husband up every weekday morning and brought him back to our home for the day. She returned him to the care home every afternoon. Family/friends arrived to take him out to supper every evening - a total of 11 evenings. I rented an international cell phone for two weeks..........and left. By my third day out, I realized I wasted my money on the cell phone. Not one call! At that point, I absolutely did not care.

I just returned home from my first respite 3 days ago. I'm again eager and happy to maintain my husband at home. I am certain that home care is a viable option - if I can continue with trained providers offering affordable respite while I supplement with informal care givers.

Sorry this response is being submitted so late. I.........was taking some respite!

Sue, M.S.W.

Sue, I couldn't have said it better. Thank you.


Gary Barg

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