Matt’s life now is like the movie Groundhog Day where every day sort of seems the same and just not the life he thought he would be living at 54 years of age. (Matt just turned 54).
He has good days and bad days and the bad days he seems pretty bummed out about life.
Of course he’s alone with his thoughts while the rest of us our out living our lives, working, making a living, etc…. and don’t get me wrong, he understands that….but for him, he’s stuck in a nursing home. It’s easy to feel forgotten, unwanted and like a burden - and he does. He has some friends there and the staff has been good to him, but what he’s really struggling with is to find a purpose. What is his purpose for living a life with MS, confined to bed or a wheel chair? He has been sort of down lately and I encourage any of you reading to take the time to have a real life “Chat with Matt” and go visit. He loves visitors.
It helps distract from the reality of what “is”.
He is frustrated by not being able to be a “real” husband to his wife and he is angry at all this disease has taken from him….his job, his house, his ability to see, to drive, to walk, and even sometimes to talk.
He knows he messes things up and he gets frustrated. He says thing he doesn’t mean and means to say things he doesn’t.
He gets frustrated when he spills drinks or food. I told him he can’t help it and he knows that too.
If you’ve ever had a pinched nerve, think about how that feels, and think about all your nerves being pinched - that’s how he feels. Some days are worse than others but the sensation to feel the grasp on a can of pop or a sandwich, it just isn’t there and he literally can’t help it.
He wanted to talk tonite….to vent….and I just let him.
I told him it sucks and there is no other way to put it but to say it sucks and I wish I had magic words to make it all better.
I told him it’s ok to be mad and hurt and all of that.
I don’t know why he got this disease, but he did and he has to take it one day at a time, even one minute at a time.
It’s times like this that I feel helpless.
As much as I want to make it better for him, I can’t.
There is no magic wand to wave to make it all better.
I told him Matt, you can’t change what is, but you still have a lot to be thankful for, a wife and kids and grandkids now! You have had a great life until this happened and you have to focus on the positive and not dwell on the negative. He said “It’s hard”. I tell him I know…but I really don’t know. I have no idea what it’s like to be in his situation and I try to be compassionate and understanding and patient and kind and I listen.
His purpose lately has been to get a pizza party at the nursing home for the residents so he started selling suckers - he wanted to sing for money but they told him he had to give people something tangible for money - and he’s raised like $70 - and it gives him something to focus on - and that’s what he needs- something to focus on.
We haven’t done an update lately because we really try to stay positive but the reality of this illness is there is a lot of negative and I only hope that I bring a little happiness to his life and to his day.
When I left to night he said “I love you so much” and I said “I love you so much, back” and I do love him more than words could ever say - my big brother, my mentor, my friend, my hero.