It’s been almost 8 years since my husband’s disease was discovered.  It’s been a long 8 years, full of learning experiences I never thought we would ever have to endure.   I’ve learned how very possible it is to get through every day life, struggling with exhaustion, or finances, or lack of time, or situations out of our control.  I know what it’s like to continually take one step forward and two steps back.  I know what it’s like to make sure my kids have a good childhood, with interesting experiences, unique opportunities, and the chance to become the people their souls are meant to become, all while living with a fathers’ illness that invades every part of our lives.  Life has been an ongoing struggle between dealing with a sick spouse, the loneliness of losing people in our lives who can’t deal with it, grieving the loss of our dreams, and living every day life, raising kids, enjoying what we can, and just keeping on going whether it’s an easy day or a hard day.

The hardest lesson has probably been acceptance of how this disease has changed our marriage.  Eight years of spousal illness takes a rough toll on a marriage.  Both of us are dedicated to each other until the end.  There is no question of that.  We love each other and we are both loyal to each other.  But life has changed for us.  My husband sleeps all the time.  When he is awake, he has no energy, or he has energy for short amounts of time.  He is on so many medications that he is often in a zone and not really hearing what I’m saying, nor responding to me.  He is in pain almost all the time.  It never goes away completely.  For all the exhaustion he has, he never sleeps well because he can’t get comfortable.  It’s really hard to watch your husband suffer every single day.  I get tired of it all. Sometimes, I just want to get out of the house so I don’t have to look at him like that.  There are days I want to scream out of frustration…frustration that he isn’t talking to me or listening to me, frustration that he can’t do much to help me out, frustration that it will never get better.  It’ll only get worse.  We likely won’t grow old together, and get to do the things we used to talk about doing when we retired.

There have been many times that I felt alone with all these frustrations, grieving the loss of a marriage that won’t be what we had hoped.  But, he deals every day with illness.  He never feels good, he is always wiped out and exhausted, he is bored being home alone all day while we are at work or school.  He wants to be included when we go out and do things, even though he doesn’t always have the stamina to keep up, and often wants to come home early.  There are times I need to get out of the house and away from the disease, so I don’t ask him to go.  I want to go out, and not have to worry about whether he is tired or in pain and needing to leave early.  We recently had a conversation in which he told me that it makes him sad when we do things and don’t invite him.  Honestly, I hadn’t really thought about it…I needed to get out, and I figured he wouldn’t want to go because he’s sick and can hardly stay awake.  I didn’t always think about asking him.

It made me realize how important the little things are when you are in this situation.  We can’t easily do the big things any more.  I don’t remember the last time we had a date night, or went away for a weekend, or did something fun together. Now, I’m happy when we have a ten minute conversation and he is awake and paying attention.  I’m really happy when he acknowledges the things I do around the house, or the little things I do to help him out, or when he brings me a candy bar just because I know he was thinking of me.  He is happy if I go to Walmart with him, or ask him if he wants to go with us somewhere, or if we pick up sandwiches and eat lunch together.

Life with a sick spouse is all about adjustments.  If you can’t adjust to a situation, you’ll never make it.  A simple shift in the mind can make all the difference in how peaceful your life is.  We have made small changes in order to make life a little easier for each other.  There will be more challenges and crises down the road, but if we do what we can for each other along the way, even little things, those challenges will be that much easier.