This is a song I heard a few years ago that describes very well how a Huntington’s Disease spouse feels. Even though the person we love is still there deep down so many changes happen that many days we don’t even recognize the person who fell in love with. This disease takes away so many things from the HD person.
- I miss the spouse that used to be able to jump in when I was having a bad day and take over for me. The cognitive decline makes it hard for him recognize emotions and know what to do to help out.
- I miss the husband that gave me warm hugs of comfort when bad things happened or I’m having a rough day.
- I miss the spouse who was extremely involved with the kids and had conversations with them about life. Instead he’s been replaced with someone who argues with our 4 year old and butts heads with the 13 year old over trivial things
- I miss the guy who could go to work everyday and come home with stories from work. These days there’s not much to tell or talk about since he can’t work anymore.
- I miss having a spouse who could drive the kids to sports practice or run a quick errand.
- I miss the couple who could figure things out and rarely fought. Now if he digs his heels in all I can do is wait it out or give in. We have had such a rough few years and have had some major doozies.
- I miss the man who slept next to me for 17 years. Sleeping together proved to be too difficult for both of us as his movements kept me awake and when he’d wake up he’d worry he was keeping me up, so now I share a bunk bed with my daughter.
- I miss the couple who worked out issues together but these days most decisions are on my shoulders.
- I miss being able to parent together. I’ve now become the default parent who makes decisions for the kids about nearly everything.
- I miss the future we had planned of growing old together. The future is very uncertain for our family now. We have no idea how many good years we have left but they are sure to be filled with many challenges.
- Most of all I miss the laughter in our house. I miss being able to joke around without feeling like it might be misconstrued and need explaining. I miss the jokes of old when they didn’t go too far and become hurtful.
You guys, this disease is a very lonely one. The spouse becomes the caregiver and loses the person they married before they are really gone. Friends stop coming around which leaves the HD person alone a lot of the time. It’s sad and I hope this gives you some insight into this awful disease and the effects of it outside of the physical changes we all see.
DISCLAIMER: This is not a post to bash my husband’s shortcomings, but a peek into the world of HD and the things that it robs.