A few weeks ago my father approached me with the idea of making a trip to Indiana. Three days later my daughter drove us to Philadelphia airport for a trip we never imagined could happen. Dad has many physical restrictions and is unable to sit for more than a few minutes at a time so the only way I could see of flying with him was to go first class. I have been saving frequent flyer miles for about 15 years and figured this was the time to cash them in. Believe it or not we did not have a single line to stand in that entire day. The ease of that trip set the pace for the rest of our week in Indiana. With Dad as my only concern I was able to adapt everything to short trips and visits. His other sister did have her nose bent out of shape because she couldn’t control us and she gave us a dickens of a time but for the most part we were able to ignore her and enjoy ourselves.
I am happy to report that my Dad’s youngest sister, recovering from a stroke in April, is doing amazingly well. Unable to move her left side at first, she is now living alone with family and boyfriend stopping in daily to help her out. She is a fighter. She’s determined to overcome all obstacles including the over-care of well meaning loved ones who want her to sit down and do nothing that might cause her to hurt herself. She seemed genuinely grateful at my attitude of if you can do it yourself you need to. I cringed a few times when she climbed down the basement steps it is true. But I learned a long time ago that some risks are necessary to regain lost skills. In fact I wish that Dick has at least a tiny bit of the fight that she has.
I also spent time with my mother’s brother. His wife had a stroke four years ago which was more similar to Dick’s. This is the first time I have been back to that area and able to see her since the stroke. I would say the opposite is true for her achievements. Because of my uncle’s physical limitations my aunt gets little opportunity to exercise. And though she is able to walk in PT she loses all that muscle ability when she is not in therapy since there is no one to assist her in standing or exercises. So, the two have pushed furniture to the sides of rooms allowing easy passage of his power chair and her transfer chair which they live in all day long.
While our stay in Indiana went smoothly, our two days in Chicago were a bit unplanned and unpleasant. Our flight was delayed several times and finally cancelled so late in the day that we had to spend the night and catch the first flight out the following day. The stress of this as well as carting luggage for two days left me in severe pain. I am still trying to get back to a baseline of pain but there have been so many things that keep me from achieving that goal. Much of it involves Dick.
I spoke to him nearly every day while I was gone. Sometimes that was not an easy task. Two times I was told that no one with his name resided at the nursing home he has been in for one and a half years! That was where having made friends with some of the nurses came in helpful since it was easier then to ask for them and then get a hold of Dick. He seemed to be in good spirits when I spoke with him. Though, he was very anxious for me to return home.
Our reunion was good. I had decided not to tell him of our delay in Chicago so he would not fret. However, on this occasion he understood exactly when I was suppose to come home and called to find out where I was. It seemed that a weight was removed from him when I was able to get in to see him. From what I could tell, the chart indicated that he had been showered and cared for without any incident while I was gone.
It was the next visit I began to see that everything was not a good as the reports had indicated. There was foul smell in his room which I traced to the adjoining bathroom. In there I found a toilet with a black bowl and filth covering the sink. It was obvious that the room had not been cleaned in at least a week. Dick rarely uses the bathroom so the impact on him came mostly from the odor.
My next day I arrived at 12:38 pm to find him in nothing but a t-shirt and pull-ups. Now I have hit the roof several times at them leaving him undressed but this was worse. It was apparent that he had not been changed since the previous evening. His bed and chair were soaked and everything was covered with *beep*. That meant that he had been neglected through at least two shifts. He was mildly agitated so the staff blamed the entire situation on him. They said that he had refused care. Come on here. If he were able to make decisions for himself and to carry them out he would not be in a nursing home. I am outraged still. I forced the aide to shower him but she was so slow the ordeal was long and arduous. She finally got him pushed into the shower stall with the water running then left him in there to get towels!! Of course I was there but I am not so sure that she would not have left him alone even if I had not been there. Then she hurt him so much when she washed him I finally took over and completed the job.
I have been trying for quite some time now to get the state ombudsman to help out with this situation. After a string of excuses she was to have visited the nursing home the Tuesday before I went out of town. I have heard nothing since then. And yes, I have left many messages. I feel so helpless and alone.
This morning I was thinking how I wish there was just one person who understood and cared about our situation. My children can only think of me and do not seem to care a bit about Dick. They are adamant about him not coming home because they know that physically I cannot keep up with his care. The same goes for my parents. My parents are also concerned that there is enough of me to care for them as their age creates greater and greater challenges. Having cared for Dick since we moved to this area and with my various physical difficulties over the past couple of years, I have not been able to develop friendships which are strong enough for me to call on others. I seem to be stuck in a very difficult situation and have no idea where to turn. It seems that the more people that live in a geographic area the more isolated individuals are. It was so pleasant to be in the Midwest for that short visit where even sales clerks had the time and interest to say hi. There even strangers stopped long enough to listen to the ramblings of an old man excited to return to the place he grew up. That just doesn’t happen around here.
Well, Thursday was Dick’s 80th birthday. Originally I had wanted to invite his cousins for a small get together but Dick is to the point where that would only confuse him. He does not seem to remember them that well. They were never close. There is too much animosity between Dick and my girls that I did not ask my children to do anything that day. In the end I took my parents and Dick to a steak house. Dick all but licked his plate clean! He lives on peanut butter and jelly sandwiches most of the time and will not try the glop that is served at the nursing home. He very much enjoyed the steak and baked sweet potato. From there we went to my parents to have strawberries and ice cream. I had a hard time getting Dick out of the car and almost dropped him because it was so unexpected. I ended up throwing him into his wheelchair. Again he seemed unable to get his balance when we left. But as I took the wheel out of the trunk in front of the nursing home he was able to get out of the car himself and walked to the front door! I have no idea what happened. And no he was not anxious to return. In fact he had wanted to do anything but go back to that place.
So now today I have yet to accomplish anything. I have spent hours weigh this and that trying to figure out what to do for Dick. I love him so much but his condition makes caring for him quite difficult. If he were a little better or even a little worse it would probably be easier. But he is variable. Last Monday he knew Thursday was his birthday and his age. Wednesday he could not remember those facts even with prompting. Sometimes he can walk other times he can only slouch in a chair. I find my options are limited to the facility he is currently in or bringing him home. He would certainly happier and cared for better at home but I know that I cannot handle the physical work of lifting. It would mean that I would never be able to leave the house even for my own physical therapy since my outings with him always wipe me out for a couple of days. They always used to say that babies should be born with a “how to” manual. In this case I wish Dick came with one.