I’m having one of those “half-empty” days. It didn’t start out that way. I was excited because Lynn was having his Tram delivered today, and I knew he would be happy to have that. The Tram is a device we bought to help him stand and perhaps even walk one day, so it’s a “hopeful” device based on our faith that he will be able to do more in line with walking in time.
However, he woke up not feeling well from his Rebif shot last night. When he doesn’t feel well, my day becomes devoted to his constant need for attention. I needed today to catch up on work I was behind in from my job. I count on having some dedicated time on Saturday and Sunday to make up for the time I have to spend caring for him during the week. Well, it’s now 7:30 p.m. I’ve given up the hope of getting to do any work. I realized I was depressed and feeling overwhelmed, so I decided to talk to you all because I know you understand. In other words, you’ve “been there, done that.”
I get so discouraged sometimes. Lynn wants me to be all things at all times and I get so tired of trying to keep up with it all. For example, he has an itch that needs to be scratched so he calls me to come to scratch his leg. I get there, and he looks at me expectedly as if I should know what itches, so I go through the twenty-questions routine to narrow it down. “Which leg, top or bottom, nearer the foot or thigh, inner or outer side,” until finally, I get an idea of where the itch is. Then I scratch, wondering if I’m coming close and when I can stop. He expects me to instinctively know what he needs.
A few minutes later, “Donna, come fix my patch.” Lynn has a pressure ulcer on his buttock I’ve been treating and covering with a foam-type patch. It’s large enough that it pulls on his skin hair at times, or sometimes the problem is the air bladders in his seat cushion that press against it and make it hurt. Whatever the problem, he expects me to make it better. He looks at me imploringly to say, “Make it stop hurting,” and I fiddle around under his leg, lifting it up, smoothing out the wrinkles, padding down the sharp points that come from under-inflated air bladders to see if “it makes it all better.” Sometimes it works right away; other times I work and work to make it all better. When it’s the last scenario, I cry in frustration before he releases me to go back to whatever job I was trying to do before he called me for help.
When I’m not magically trying to fix pain and discomfort, then I’m acting as a psychologist. This week, he got depressed because he had a visitor who chose to tell him about two people she knew with MS who had serious complications or whom the disease had devastated. One of them died, and the other is bedridden and in a lot of pain all the time. After she left, Lynn, in exasperation, asked, “Why do people do that? Why would anyone tell someone with a chronic health condition about someone with the same condition who was doing much worse than they are? Can’t they understand that I don’t want to hear about how “bad” I could get? It’s hard enough to keep a positive attitude and keep fighting this thing without someone trying to bring me down with stories of how others lost their battle.” After that visit, he was irritable and easily annoyed and needed attention.
A new challenge lies ahead for me. Lynn now has his Tram, which could lead the way to a lot of progress, OR it could result in disappointment and frustration if his condition doesn’t allow him to stand with support. However, who will be the one to help him with his goal of walking? I am, of course. Insurance cut out his home visits for Physical Therapy. They might approve outpatient visits, but honestly, if I had to take him in for PT every day, I might as well give up my job now. It takes at least three hours to get him and me ready if we are going somewhere or having someone come to us; then there’s thirty minutes or up to an hour to drive to wherever we’re going. Therefore, to save time, I’ll have to become his PT. I already help him daily to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance withstanding. He will need to increase his endurance by standing longer at a time, so I’ll have to be close by, meaning–more time away from my paying job.
He needs to have done everything he asks me to do for optimum health. Everything he asks me to do, though, takes time from all the house maintenance, car maintenance, shopping, cleaning, food preparation, personal hygiene, job duties, making appointments, etc. He needs a full-time assistant, but our bills are significant enough that I couldn’t carve out that much money to have someone full-time–and in-home care is not covered by insurance. I work twenty-four hours a day, seven days a week. I haven’t had a day away from him that wasn’t related to my going to work since Eli was born, and I stayed at the hospital all day/night with Sarah and Greg, waiting for his arrival. That was May 27. Before that, I had a shopping day in October, looking for a dress for my nephew’s wedding. That’s the only time I have been away for several hours unrelated to work in a year.
I’m tired, discouraged, and need sleep. I need to get away, but I need to go give him his shower, fix dinner, get things ready for his family, who is coming to our house for an after-Christmas gathering tomorrow, and meet his many requests for assistance until I fall into bed around 2:00 a.m. tonight. Oh well, life goes on.
PS: Don’t worry about me. I’m just using you to regenerate myself. Thanks for allowing me to share my feelings with you. I can’t do that with Lynn; it would hurt him too much. I’ll be fine. I’ll see my grandson for a few minutes tomorrow, and the world will be smiling and cooing again.
Thanks for listening.
