FROM THE EDITOR'S PEN /
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
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, I couldn't have said it better. Thank you.