Caregiver Perspective: Independence Battles Protection
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 the 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 slowing losing his identify 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 absolutely 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 us a cane! He refused to admit he needed help because in his mind if he gave into the disease, then the disease 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 very busy 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 in 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 totally 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 in what we were doing and both of us were but we needed a compromise. We finally talked about our fears—his that he would lose everything if he gave in; me that he would lose everything if he didn’t. We finally reached a compromise. If I saw that he was too weak to walk and called it to his attention, he would “listen” to his body and use a cane. If he simply lost his balance, I would check to see if he was injured and if there was no blood or broken bones, I would allow him to get himself up unless he called for help. It started to make things better but it didn’t still my fears. Every time he fell; I cringed.
As he adjusted and as I accepted his need, he started using his cane and made better decisions for his own protection but it was hard on both of us. To some degree, I’m just glad we’re over that struggle but on the other hand, now that he is dependent upon me for everything, I miss the days where getting help was an option; not a requirement.
Who can relate? "Just because I could do something last year, last month, last week or yesterday doesn’t mean I can do it today. Also, it doesn’t mean I can’t."