by Michelle w. on November 1, 2012
When was the last time you felt really, truly lonely?
Last night, actually I felt lonely, right as I was lying down to go to sleep. I try so hard to not look at myself as a big pity party with only entertaining one guest, myself, and I am not even sure if I qualify for the word pity.
Caring for my brother, who has been in my care almost five years. This will be five years in January 2013. Dealing with mentally impairment, heart attacks and angina, and now, Parkinson’s Disease. Life becomes over whelming most of the time.
It is described as a little snow ball rolling down the hills until it becomes so large, the city can see it if they look in this direction. It started out, that I was able to still work while Al, my brother was ill. He worked also, at a linen company, sorting mops. It was a nasty job, just plain nasty, and in my eyes, it was the bottom of the pit job, and he never climbed out of it, but with his mentality, he saw it as a paycheck and nothing more, nothing less. He did this for nine years, with very little pay increase.
When January rolled around, from which we had buried our father only three weeks prior, Al had a heart attack. I was still able to work a little while longer. I was and am still considered a professional caregiver, and I was at the time, caring for an elderly couple on the weekends as a live in. Al was recovering nicely, but when it came time to go back to work, he could not pull his weight in work.
The company was so good to him, even though he made little money or given nice raises. They cared about him. They let him return three times, but then they called me into the office, and with tears in their eyes, they let me know they had to let him go, because although they liked him very much, he could not do even fifty percent of the quota.
This changed things. I retired from my job and started caring for Al. With no money coming in for him, and no job, and not really having any idea how to run a house hold, it took my entire waking hours to make everything work.
From the heart attack came excessive mental baggage of not understanding why he could not do the things he used to do, then more heart problems, angina. We dealt with this for some time and even had to move, because walking stairs to his bedroom was too much for him.
Now we have been dealing with the progressive Parkinson’s for two years, and for him, it has sped very fast from the beginning, now leaving him in the fifth stage. You deal with many issues with Parkinson’. Freezing up of legs,tremors, choking, tears, unable to control urine, constipation, scooters, walkers, canes, many doctor’s appointments with different specialists. The emotional part is probably the worst of the disease. Hearing him constantly talk about wanting to die, why isn’t God letting him die, hearing he is sick and the disease is destroying him.
A part of his brain has shut down. The part that lets you see joy and happiness, so mostly Al sees only himself, and his pain, which is a constant in his life. I can sit here and listen, help, watch, guide, explain, but at the end of the day, Parkinson’s will win this game, and Al and I will lose.
So at the end of the day when I have him safely tucked in bed, and he is nice and dry, and his television is turned on, I wait for his tremors to settle down from his night-time medications, and by the time he is falling asleep, it is around three am, and from midnite until three am, I have the open opportunity to lie in bed awake and listening, wishing I was not walking through this journey alone, and I get very lonely