For the most part, our home life is fairly stable meaning we have the same things happening day in and day out. We have a routine – I get Lynn up for the morning and help him with his exercise, take him to the bathroom for his bowel regimen, put him back to bed and do a partial bath including skincare, and he takes a nap to recover from that activity. It takes about three hours to do all that. None of it is complex (except sometimes the skincare) but most of it is very physically demanding and Lynn can do nothing to help with it except cooperate with what I do to him. Once this morning routine is completed, the rest of the day is pretty basic attendant type care (assist with eating, getting things to drink, changing position, helping him write, etc.).
At night, the work increases again by preparing meals, etc., for the next day, bath time, nighttime rituals, etc. Including my own personal care and feeding, it takes about five hours to get it all done and get us to bed. Again, the work is not complex care; just physical and time-consuming. None of this is complicated but all of it is necessary to maintain quality of life that is not miserable every minute of every day till you die so it’s very important stuff. It is also stuff that if you cannot do on your own, is very, very expensive to have someone else do for you unless you are fortunate enough to have family or friends to help you out.
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In the six years I took care of my late husband Bill, there were times when I wondered what would happen when I got sick. Fortunately, Bill’s Medicaid program covered respite care for him in a nursing home, but getting him there might have been a challenge. You can read more about this in my new memoir. For more information, visit http://www.abbiejohnsontaylor.com/memoir.htm .
In the meantime, Donna, keep on keeping on. I’m sure Lynn appreciates all your sacrifices and doesn’t like having to depend on you or others for everything.
So true Abby, He had much rather be the one giving the care than receiving the care. Thanks for sharing.
You’re absolutely right, Donna. Bill wanted to be the one to take care of me, not the other way around.
I totally understand the daily routine. My husband has Muscular Dystrophy and I am his full time caregiver. It’s not complex work, but it’s important. You’re right, it’s very, very expensive to get help from a home health agency. I’m with you. You are doing the right thing for him. Stay strong!
Thank you for your support
How did you manage to finally get a in home caregiver. It looks like the time may come so could you share some avenues. Thanks as always
I certainly will. I feel so blessed now to have some help and with that help, I do plan to start writing more. I just have to get a little organized first due to some recent family changes that needed my attention but you will be hearing more shortly. Thanks for your interest.