Surprises of Care Giving

1/17/2014 My husband retired from the USAF as a career fighter pilot. With 737 and Lear jet ratings in hand, he was suppose to be off to the airlines. But, fate laughed and intervened. A rare genetic disease took hold just as he retired. He lost his balance and gained double vision. He grounded himself, saying it wouldn't be safe to fly, seeing how he was losing his sense of up and down.

My son, a software engineer for Qualcomm, was able to put in nearly fifteen years of programming, before being forced to take medical retirement. He shares the same genetic disease as his dad, but has a more aggressive form. The early expression of the disease is called "anticipation."

Three years ago my husband and I moved in with my son, so I could take care of them both, since my son could not live alone. This is where the fun really begins. Having two guys, in wheelchairs, with double vision, coordination problems, numbness in the fingers, toes, and feet, and strength issues led to some interesting discoveries.

The Bathoom after Terry's Visit

The first discovery being it is difficult to maintain a house with a built-in wrecking ball! My husband drives his chair like a jet. With vision and coordination problems, he inevitably ups the speed setting to fast, faster, or fastest, by merely hitting the control as his hand flails around. He can't tell where the door opening are and repeatedly takes out the door frames. Bathrooms are another issue. Often the
commode must be re-set on its base. Four times close encounters with a low flying UFO left cracks in the porcelain requiring replacement of the entire toilet. This discovery evolved over time and was expected as side-effects.

The next discovery was that we qualified for nothing. People often ask me who I have to help. I answer, "I have three people... me, myself, and I." Not only does Medicare not provide for long-term care, but we were told my husband did not qualify for VA benefits. Let me repeat this. My husband had been a U.S.A.F. fighter pilot for 20 years, but he does not qualify for Veterans Administration benefits. We couldn't believe our ears, but then, he's half-deaf and I'm getting there, so our ears aren't reliable. How can this be?

In 2004, Congress passed a bill waging a war on wealth, placing an income limit on veterans. For us, living in Southern California, wealth is considered anything over $56,760. If a veteran saved and invested his earnings, he gets penalized. Congress is rather like the soup-Nazi, "No hearing aids or glasses for you!"

Then, my son lost his insurance. Cobra ran out and Medicare hadn't kicked in. Medicare pays for nothing in regards to long term care. Social Security will provide six months of a limited number of hours of homecare for terminal patients. Do you really think I'm going to tell my son he's terminal, at any point? My son has long-term care insurance, but it only covers two years. We have to decide what the expiration date is on the bottom of his foot and anticipate it two years in advance.

I decided to begin blogging about our family last night. In order to tend to my guys, I am swapping my days and nights. It's 6 a.m. and I've been up all night. Sleep will come in a few more hours. Last night my son decided pneumonia was a fun way to keep me up... again. Several years ago he lost part of a lung to aspiration pneumonia. For several hours last night, it was touch and go as to whether I needed to call 911. A rescue inhaler saved the day, as did the "Vest." The "Vest" looks like a water safety vest. It is designed for people with cystic fibrosis. It rhythmically thumps his chest to help him cough. Even so, he coughed little. His oxygen plummeted to 84%. We have a deal that when it hits 88%, it's E.R. time. He managed to hold mostly between 91-93% for several hours, before the number slowly crept upwards.
#DementiaHusband #VA #Medicare