I have asked myself this so many times, the same things, the same reasons, the only answer I can come up with is.......yes. I just think back over the last 15 years and look at what has happened and what has changed. The list is almost frightening.
1. Balance, I was an avid sailor, airline pilot. I could strut through a terminal or a boat yard, and people would see confidence in every step. Now I walk through my house from handhold to hand hold, shuffle through Wal-Mart like an old man who is afraid to take a BIG step.
2. Although as a pilot I had a very varied sleep pattern, I slept, I got rested, I never needed to nap, now I need to sometimes twice a day.\
3 I loved to cook, I could copy restaurant recipes by taste and smell, now I can't smell fresh herbs or spices or tell the difference from cardboard. I do still smell a few things. I used to love salmon, now the smell makes me sick. I can no longer smell a fresh mowed lawn, I recently walked through a horse barn and didn't notice the smell. And on and on..
4. When I had my boat I could bend and twist and squeeze into the engine compartment, now I can barely bend well enough to get into a passenger seat in a car.
5. When I lay down to rest, I t feel like I was shaking apart on the inside, I still don't have a "visible" tremor, I stress visible, the invisible ones are every bit as real and as draining
6. I used to be able to have and enjoy sex
7. It was never a calendar event to have a bowel movement
The unfortunate part is that this list goes on and on, it is never one thing, it is the everyday thongs that don't work. I just went for physical therapy for Parkinson's and did the exercises in the "Big" part of Big and Loud. The therapist said we had to train our brains to do what we once did, by concentrating we could strut like I once did through the terminal. He was right, for a few steps I did, my wife saw it. But the effort it took, drained me. I could kind of do the exercises along with him, but as soon as they were over, I was the new and degenerating me again. As I lay he re at 3:15 am thinking about this, knowing the only thing that gets me mobile in the morning is my handful of pills, and the only thing that allows me to sleep are more pills, I know it's Parkinson's, what else could take and take and respond to only one pill, or specific bunch of pills. My voice grows softer, my face less expressive, my typing worse my handwriting illegible, and my ability to find the word I'm looking for more difficult, what else could it be. What else could sap the joy out of life by robbing my body of the brain chemical for joy and enjoyment, control of my body, it must be either some new unheard of illness, or it is Parkinson's. On the days I feel good, I don't for a minute believe I have Parkinson's, right now as I lay here in bed, hurting, thinking, and remembering, I know the truth, it's Parkinson's. Always hope, Always believe it will get better, but I think it is best to accept and understand the demon we fight. When I finally got the name of my demon at least I knew who I was fighting, it wasn't something in a made up, am I fooling myself world, it was a true demon named Parkinson's.
To the good days that let us forget for a while.....
Another discussion had was about becoming inconvenient and a burden to family and or care givers. It was really a good discussion and many things were talked about. I was surprised how many felt that they were or will become a burden. I know taking care of anyone with a disease or injury is very hard work. It is demanding, frustrating, and even makes you feel inadequate, but caring for someone you love should never make them feel like caring for them an inconvenience.
When we make a commitment to someone for life, we say we will be there what ever the problem. Not be there until something goes wrong. A commitment is just that, it means doing what it takes to love and care for one and other. In both the good and bad. There was talk about how one person deserved to be cared for more as revenge for a life that was not what was expected, or for some wrong during the marriage. That can only lead to more hard feeling and maybe worse. If you are or with someone who makes caregiving a burden and an inconvenience you need to find someone to help, or maybe just find someone else to do it. I am not so naïve as to believe that care giving is a bed of roses, it is the most demanding thing a person may ever be faced with in their life, caring for someone you love, and watch them deteriorate is a thing hard for most to imagine. In the case of our life I am the one deteriorating, and my we is the one who has to help, and watch me slip away.
I had a chance for a short while to see what being a care giver is like. She had carpal tunnel surgery on both hands and was almost helpless, it wasn't as bad as expected, but still she could do very little. It was very hard, frustrating, and at times I felt inadequate, but I never felt it was a burden. If you love someone it is just one of the things that you do. I had for a time been a caregiver for my best friend at the time. It was a old beagle corgi mix that just got old. He developed diabetes, became blind, and took a lot of care. I did it out of love and the desire to make his life the best I could till the end. As I would do for anyone I love. It is what love is, commitment and giving for the sake of love. I hope that no one has to go through what caregivers do, I am grateful everyday that I have someone to help and care about me, someone who does what she does for me out of love.
I hope to write more often again now that the Holidays are over, which is a whole new blog and I think will be next.
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