I’m having one of those “half-empty” days. 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 of 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. and I’ve given up the hope that I’ll get 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 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 instinctually just 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 hurts. 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 feel like crying in frustration before I’m released by him 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 psychologist. This week he got depressed because he had a visitor who choose 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 bed-ridden 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 that 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 for a while so he needed a lot of 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 a lot of disappointment and frustration if his condition won’t allow him to stand with support. However, who is going to 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 a minimum of three hours to get him and I 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 every morning to change weights, apply straps, adjust positioning, hold equipment, etc. while he works out. I’ll be adding to that assistance with standing. 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.
Everything he asks me to do he needs to have done 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 REALLY 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 feel like I’m working 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 into 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 to wear to 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. I’m discouraged. I 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 are coming to our house for an after-Christmas gathering tomorrow, and meet him many requests for assistance till 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 tomorrow for a few minutes and the world will be smiles and coos again.
Thanks for listening.