The life of a caregiver and their “caree” is always in such a delicate balance that I think of that old saying, “Don’t tip over the apple cart.” When I hear that analogy, I imagine a small cart piled high with apples, holding its own until someone puts one too many apples on the pile, and then the whole stack comes tumbling down…or maybe it’s similar to a house of cards? I’m not sure which, but I know it doesn’t take much to upset the balance.
In our world, balance is the secret to having a good day. There needs to be a balance of sleep versus awake time, my work and his routine, his needs, and my available time. There also has to be an emotional balance. We can cope with the routine aches, pains, fatigue, and malaise, but throw in more pain, fatigue, frustration, or sleep deprivation than usual, then the balance is gone, and we have to work toward establishing equilibrium again….whatever that is on that particular day.
What threw us off this week was Lynn’s powerchair. We’ve known for some time now that the motor was sounding as if it would go out at any time. When we checked with our “chair repairman,” we discovered that insurance would not pay to have it replaced until it actually went bad. I know that motors are expensive (over $1400) so I understand that the insurance company doesn’t want to replace one unless they know it’s essential, but obviously, they have never had to survive a broken wheelchair!
Lynn’s powerchair is the Cadillac version. It has three speeds: the legs elevate, and the chair tilts, among other things. He uses the leg lift and the tilt function off and on all day to achieve comfort. When his legs get stiff, he elevates them to different positions. When he scoots forward after a while and ends up sitting too far forward, he tilts back and gravity helps him slide back so I don’t have to lift him. He does These two maneuvers with it all day, but there are many more. Suddenly, on Wednesday, he tilts back to adjust his position, and there is no response! Fortunately, he was not tilted back like he was being launched into space; he was on the ground, but the impact of losing “tilt” was enormous for his quality of life.
Since he could no longer tilt, he could no longer help me in shifting his position himself, so I had to lift him more; therefore, my back was sorer. When he worked, he could not position his chair in the slight tilt needed to keep his knees from hitting the keyboard on his computer. It interfered with his comfort in sleeping (he sleeps in the chair), his exercising, his moving from place to place with his legs dangling, and so much more…but the worst was that it kept him from shifting his weight as he sat for hours. By not being able to shift slightly every so many hours, he experienced “butt fatigue,” so he could not get comfortable. His buttock skin stayed compressed longer, so it is redder, and he now has a couple of top-layer skin tears. There was even more impact than this, but that’s enough. Let me say that it was traumatic….for us both.
In our house, “if Lynn isn’t happy, nobody’s happy.” When he’s uncomfortable, he looks to me to find a way to make him comfortable, which means constant interruptions. At times, he gets angry and frustrated, but that blows over. What is worse is the sadness and worry in his eyes. He wonders how long he will have to suffer and what the impact will be. When the balance is off in an MS patient, bad things often happen.
Fortunately for us, it didn’t this time. I cheered with joy today when the doorbell rang, and it was the repairman with a new motor. We were both very grateful for his ability and house call. The chair is now fixed; Lynn is comfortable again, and I should be able to get his poor butt back to health without too much trouble.
So, once again, balance is restored. We both prayed for God to help us during those hours of waiting for the repairman…and he did. We worked together to make Lynn more comfortable and to reduce the discomfort as much as possible. … and where we could, we joked or made light of the problem. Using humor seems to lighten the load, so we try that out when we can. Sometimes, it works, and sometimes, it falls short, but most of the time, we have at least a few minutes of respite to forget the seriousness.
So anyway, watch the apples you put on the chart. Try to keep a balance. When the focus shifts to the front, then try to lighten the back and get back the balance. It helps to make the waiting time go much faster.
