Recently, a kindred caregiving spouse wondered how many hours of care she should consider for her husband. She had been going it alone, and with all her heart and love. Anyone who’s been there knows how intensely draining and lonely this can be.
There comes a time on this journey when caregivers need relief. For me, it was pretty much from the get-go; I knew I wouldn’t survive if I didn’t get time to myself. I have termed my need to get away (to the gym, the store, a museum, to lunch with friends) as existential.
Today, with Burt needing both more and [understanding] less, it is increasingly necessary.
This was my response to her question about how much time to give over to a professional aide.
When I began to hire caregivers for Burt, he needed companion care.
I couldn’t leave him alone, but he was able: to dress himself, use the toilet, walk independently, etc. I had 16 to 20 hours at first [in 4 hour increments].
He now needs help with ADLs, wears a brief, and depends on a walker. At times, his walking is unsteady. I use 42 hours [6hrs/ 7 days].
I could use more, though I have some privacy issues in a one bedroom NYC apartment and have to work out how a longer schedule would work for us.
I use approximately 30 of these hours for my-time. I come home and work with the aide for the last hour of her weekday shift.
On Sat & Sun, the point of the helping hand is so Burt and I can get out together. His weekend aide helps get him dressed and cleaned and bathromed.
Then he “drives” Burt out in the wheelchair with me so we can go to a park and out for ice cream.
Today, I am grateful that it is Burt’s 85th birthday.
Happy birthday, Burt.
this is our life 
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