Adjusting to New “Normals”

As I have mentioned several times in previous blog posts, my husband had a devastating neurological disease called Multiple Systems Atrophy type c. He was initially diagnosed with this in April of 2006, and a more definite diagnosis was given of this in the summer/fall of 2006 at Mayo Clinic.

For awhile my husband continued to work. In fact, he probably continued to work longer than was really safe. The declines continued to come, however. After quitting work he gradually went from a cane to a walker and finally to a wheel chair. I was looking over some of my journal posts in May of 2009 and May of 2010. In May of 2009 I was lamenting the fact that he needed to graduate to a wheelchair. In May of 2010 I was lamenting the fact that he needed to begin to have assistance getting into bed. Just a few months later I needed to use a lift to make transfers with him.

When my husband began needing assistance into bed at night I wrote the following: “We are adjusting to working together to get him in bed in the evening. That is not the most difficult part. The most difficult part is adjusting to a new “normal.” It is realizing that we are taking another step back.” It was also difficult having to prompt my husband each step of the way when making transfers. It seemed as if the brain was having a problem conveying the message to his body to take the next action.

Each step backwards was so difficult emotionally. Sometimes I felt emotionally at the end of my rope. I hated what the future likely held for my husband and I in regards to the progression of his disease. I hated the adjusting to new norms which were rapidly and constantly downward. Sometimes I feared what the future held. We were dealing with a terrible disease. When I was afraid or angry or discouraged, however, I tried to remember that the Lord held my future. I know I was guided step by step.

My husband entered his eternal home on January 2, 2011. He is free from his disease. I miss him so much, but I know who still holds my future. Dear Christian caregiver, trust that God holds the future of you and your loved one also. The way ahead may be difficult, but He will be with you step by step.