One of the greatest struggles I have found in being a caregiver is finding the happy compromise of my husband’s need for independence and control of his life versus my need to control his environment and keep him safe and healthy. Many times these two needs seem to be in direct conflict with each other. Here’s why I think.
Lynn was in his 40’s when he was diagnosed with MS. He was married, had a child, a successful career that was very physical, he played in a band, sang, and was a strong man of faith. MS came along, and suddenly, he was vulnerable. No longer did he have the stamina to work all day and go to band or choir practice at night. No longer could he go to trade shows and walk the miles he needed to make sure the displays were set up and workings as necessary (these displays were often the size of small houses). No longer could he travel and immediately to go work after landing. No longer could he drive because he could not determine when his leg would cooperate with pushing the gas or the break. In his mind, he was losing the man he was because let’s face it; we are what we do to a large extent. He was slowly losing his identity of himself, so he was trying to control anything he had the power to control. Thus came the conflict.
As Lynn’s muscle fatigue and spasticity would get worse, so would his balance and ability to walk any distance. Several times a day, he would fall. Sometimes he would get hurt; other times it was his pride only that got hurt, but he refused to use a cane or a walker. He would put his hand on the wall or furniture or lean on me, but he was NOT going to give in and use a cane! He refused to admit he needed help because in his mind if he gave in to the disease, then the condition had won.
When Lynn was diagnosed with MS, we were married (both for the second time), both of us had children, and I have a very time-consuming and difficult job. My two children lived with us, so my life was hectic all the time caring for the kids, keeping up with the house, and managing my demanding job. Though Lynn and I had joint interests (we both were in choir and both very involved in church activities), much of the time we went our separate ways because we both were super independent. I also needed to be able to control my life so I could fit everything that I needed to do. When I have control, I feel safe and confident.
I watched as my husband’s body began to decline. I could see his struggle to keep going when exhausted. I could see how, as the day progressed, his balance got worse. I understood that he felt that if he “gave in” to the disease, he would lose his fight against it. However, I was also very frustrated with him. I saw him fall and sometimes not be able to get up knowing that at any moment, he might fall and break a limb or hit his head or break his back. I KNEW he needed to use something for support. I KNEW he needed to make changes in his lifestyle to conserve energy…but, he refused. I became angry.
I was angry and frustrated. He was angry and frustrated. Both of us felt right about what we were doing, and both of us were, but we needed a compromise.
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