Caregiver perspective: Sharing the Burden
In the day to day activities of living and doing what is necessary just to get by, I often get into a rut and if I’m not careful, start feeling overwhelmed by all I need to do and all I want to do but can’t because time or obligations just don’t allow for it. I am often my own worst enemy because I struggle to do everything – what I want and what I need both and it’s just not possible to do it all…but I still try. I know I need to be realistic about what I can accomplish and cut myself some slack for those things I can’t do right now.
When I’m in one of “those” moods that I just HAVE to do what lies before me, my self-incriminations really get out of control. That happened to me this week. Lynn has such a positive attitude. He just doesn’t give up on the possibility that some day he may walk again or be able to do some of the things he used to do. He exercises each day; even if it’s just a little because he’s feeling too bad. He still sees himself as the man he was. He has the knowledge and the skills needed to do so much but just not the ability…but he thinks that I can do anything…including having his abilities if he just tells me what to do. Wrong!
I often hear him talking to someone about something they need or want and he’s saying, “Sure, we can do that” while the whole time I’m listening I’m thinking, “Are you nuts? When am I going to be able to do that?” Part of my struggle is that I’m just not mechanically inclined. My hands are now very weak with arthritis and if I need to strongly grasp something, it just isn’t going to happen. The hand weakness is what did me in this week.
Lynn bought a walking harness with the overhead lift we just installed so the he could stand for a while. Great idea. Standing is a good way to get better circulation, improve respiratory function, and assist in digestion; all good things. So first thing Monday morning, as soon as we finished our morning hygiene routine, he wanted to put on the harness to try standing. It wasn’t quite a disaster but it was close. He was so disappointed and frustrated. The problem was that I just could not get the harness strapped in place correctly so instead of standing he would rise in a sitting position. The more I tried, the more frustrated I became and I just kept saying over and over, “I just can’t do this.” I unfortunately, get defeated easily. I could tell he was upset with me because he doesn’t give up easily. I started to cry; he felt guilty; it was just a bad scene. So we prayed.
Lynn led us in prayer and he asked God to give me comfort and encouragement and to take some of the burden and make it lighter. It really did help. I calmed down and even took a short nap which helped. I started researching how I might be able to hire a physical therapist to exercise him three times a week but then I discovered, they can’t do that unless they have a doctor’s order. I know it won’t be covered by insurance because it’s health maintenance; not health recovery and that’s very frustrating. So I wait for someone to tell me about someone who might be able to help. Lynn reminded me that I really didn’t have to do it all alone. He could help with prayer. My Facebook friends are helping to spread the word about our need. My stepson says he might be on to someone who might be able to come help exercise him periodically.
I have to learn to trust in God’s help for me and that maybe there is more than one way to solve an issue. If I would allow Lynn to help and not worry so much about letting him down, then I would not feel as overwhelmed and the thing he needs help achieving would not be as insurmountable. I just need to learn to share the burden both with Lynn and with God.
Do you live with any comorbidities aside from MS?