Determined to Deal with this Disease and Keep Him Home

Two and half years ago my then-boyfriend was diagnosed with ALS (Lou Gehrig’s disease). We were determined to deal with this horrible disease  … and keep him home. I had no idea how hard this job would be!

I stopped working last March to stay home with him as he was no longer able to be left alone. It’s a full time job that’s getting harder by the month. We got married a year ago and I will do everything in my power to keep him at home. We now have a nursing service that comes in, an RN comes twice a week, and an aide comes in twice a week to bath him as he is taller than me and I can’t safely get him in the shower. It’s sad to see a loved one reduced to the way he is … not even able to feed himself.

My husband was a police officer for 18 years before being forced to retire due to the disease. My inlaws don’t offer their help, it’s sad because they will regret not spending time with him later when he is gone. I have one friend that can help me with housework one day a week, otherwise I am the only caregiver available for him.