Tuesday, April 18, 2017

Update 2017

Going out these days - G on his mobility scooter and me on my recumbent bicycle

Well, This year, 2017, has been different from last year but hard to tell if better. When  DH came home, I had to jump into the role of caregiver, where I get to do all the work.  DH still has anesthesia delirium so seemed to be mostly sitting, didn't talk much to me, and getting weaker and weaker to the point where he can hardly walk at all.  And depressed on top of that. His days are mostly spent, sitting in his chair, starring straight ahead. He watches the pictures on TV but doesn't seem to be able to follow the story very well. As the time wears on, I see small improvements - at least more alert.  A friend at church told me that anesthesia (and he had 14 hours of it with his 5 surgeries in 2016 plus 8 months in the hospital) takes a while to get out of the lungs, especially in the elderly (he's 72) as they don't move as much.  The friend suggested taking deep breaths every hour or so, might help.  DH gave me real heck about getting on the stationary bicycle which not only would help his legs regain muscle but also effect deeper breathing which is likely why he was a bit more lively after even 20 minutes on the stationary bicycle.  He seems to be more amenable to the deep breathing when he remembers.  Mostly I had to realize that the guy who left on Jan 5, 2016, may never be back and I need to adjust.

DH on an outing with our son - he loves it when son takes us out for pizza. Still likes to eat the food which clogged his arteries.  

He went from being a sort of fun, cheerful guy with very mild vascular dementia in the beginning of 2016, to a sullen, quiet, non responsive and immobile guy (after 5 surgeries, osteomyelitis, septicemia and lying on his back for 8 months in the hospital).  

Gerry and me on scooter ride just before he went into the hospital in Jan 2016

A hard pill to swallow, especially in our 51st year of marriage.  We never envision "growing old together" like this. Especially as I, also in my 72nd year, am still mobile, probably somewhat due to my embracing the Dean Ornish program of a low fat diet, mild calorie restriction (no fast food or junk food) and aggressive 40 minute full body daily exercise / cardio program in 1994.  Ornish is a cardiologist who had heart disease running in his family - he did a lot of research and came up with the fact that folks on this type of program, evidenced virtually no heart disease and greatly lowered rates of cancer, thrombosis and stroke. I tried to get DH on that same program (I read 19 books on health and exercise physiology - we don't hear this stuff from our medical providers.. ** sigh **) but he would have no part of it. Hated exercise and could never eat like I was eating, he told me. So he stayed on the American diet of fast and junk food and very little exercise. But I digress - just to say that I suddenly found myself married to a sort of stranger who was immobile, resistant to therapy.  I felt I had no life left even though I felt pretty well.

After his fall, they transported him to a hospital but only damage was a hairline fraction of his finger.

There was some excitement but not of the right kind.  Like when DH decided he was initiating a "walking program" but he went out without his walker and lost his balance and fell.  I had to call the Fire Dept to get him up and they transported him to a nearby hospital to get checked out.  I found myself thinking if they kept him overnight, it was be a nice break but he only had a hairline fracture on his finger. Had to take him to the hand doctor who
x-rayed the hand and made a sort of a brace which he found more uncomfortable and cutting into his arm. They also cat scanned his head to make sure no bleeding.  The result showed extensive brain damage of the occipital and temporal lobes, a bit discouraging to look at. The insurance was the only winner on that one.

I finally, just adjusted and looked for ways to cope.  One important thing seems to be taking small "me time" breaks of 40 minutes to an hour - If I have him pottied and fed, I can leave him alone for small periods of time - I leave his phone close to him in case he needs to call.

me with Michael John Poirier, musician and singer supreme and nice person, at church

For longer breaks, I can sometimes arrange a babysitter.  For example, for Good Friday when church wanted me to play violin, our son came over and sat with DH, bought him pizza and I got a 2 hour break. DH had a good time (eating he still enjoys) too.  I hope to be able to attend my granddaughter's graduation from paramedic school - that's going to take a bit more creativity to find a babysitter since family probably won't be available but never can tell.

A few of those breaks during week make for a fresher me.

Finally, we tried to get him walking with the walker but by this time, he was in such poor condition, that it challenged his immune system and he came down with a cold which he gave me to me.  I put him on antibiotics but I had to tough it out and still have remnants of my cold.

Bottom line, learning situation - being a caregiver with a cold is harder than being a well caregiver.  Nothing like things getting worse, to put things in prospective.

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