Dear Bill,
I spent the morning cleaning the house and biking to music,
pretty mindless activities. Which gave me plenty of time to reflect on my life
as it stands. If I had to do it all over again, I wouldn’t change anything. I
fell in love with your smile. From that first date on the boardwalk at Santa
Cruz Amusement Park, through our years in the Army together, through our
several moves around the country – that smile made our marriage add up to “a
wonderful life.”
I wouldn’t change having the kids, going on family vacations
and joining you on business trips, even working on home improvement projects
together. Every meal we shared, every argument we made peace with, every job we
lost and emergency we dealt with, they all combined to give us 41 years of love.
I’m being generous. The last year and a half of our lives
weren’t happy, but we gave it our best shot. From walker to wheelchair to power
chair, we still managed trips to Home Depot and the movies, and even took that
cruise to the Caribbean. My biggest regret was not being able to visit your
sister in Michigan, and going to Niagara Falls. We just waited too long.
It was difficult to see you lose mobility and have
trouble swallowing most foods. It got to be terrifying once you weren’t able to
speak. Although we had fun with some of your gestures, I could see the
frustration in your eyes. I’m sure you could see mine when I couldn’t
understand what you wanted. But through the first eight months, I still caught
that smile, the one I fell in love with, and I knew we were good. Scared and
tired, but good.
It really went downhill when you got the feeding tube
inserted. Your body just did not take to it very well. I felt so bad for
pushing you to get it. On one hand, it seemed to cause you more pain and issues
than without it; on the other, you would have withered away to nothing without
the supplemental feedings.
Within six months of the feeding tube placement, you had
lost so much weight you couldn’t hardly support your own weight. First we got
home care assistance, then we got home health care. I should have asked for
Hospice sooner than I did. I’m sorry for my clumsiness, for my breakdowns when
I couldn’t lift you on my own or move you in your bed. I needed a lot more help
than I ever realized I would have to get.
I know it’s alright now. You’re out of pain. You’re probably
somewhere playing cards with Dad, visiting your folks and shooting the breeze
with Bob, who went before you. I know I can’t drown in the morass of regrets. Second
guessing myself is unhealthy.
It’s over and done with. We did the best we could, with the
help of the VA, the ALS Clinic team and our fellow support group members. And
we certainly couldn’t have done it without them all. Living with ALS is really
a team effort!
Whew, I’ll get off my soapbox now, hon. Just wanted to
update you with where my thoughts are going nowadays. It’s been almost five
months now, and since the New Year, I’ve got used to saying, ”My husband passed
away last year,” not just a few months
ago. I don’t know how I feel about that. It seems to put a little distance
between us, but maybe it just gives me a little distance from the grief.
Either way, you are always in my heart, in my mind and in my
prayers. I will love you for a thousand years,
Pat
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