As I write this it’s been two years, one month, twenty-one days, seven hours and nine minutes since ALS hijacked our lives. It wasn’t so bad at first. Jim’s arm and voice were weaker than normal, but we were able to live in the comfort of denial for a few months. Jim returned to his job as a Chef at a country club and was able to work for the first month, but it soon became clear that it wouldn’t be long before he’d have to retire. As a chef you need quick reflexes, and it was getting harder for him to move, and he was starting to have minor (thankfully) accidents. We worried about the usual things with him leaving his job. What would we do without his income, etc., but more so I worried what he would do. He loved cooking and being a chef. It was such a cruel disease for someone in his line of work.
It wasn’t long before the reality of ALS hit us. Jim went from walking with a cane, to walking with a walker, to using a wheelchair when outside of our home. This all happened within a matter of fourteen months. He was still able to be home by himself and we had many systems in place to allow for this. For example, I would leave things at lower levels and use lightweight plates, so he could get himself lunch. We were constantly looking for new ways to accommodate him to keep him independent. ALS of Michigan was a great help with this.
One day after work I was pulling in the driveway with our son Augie and I opened the garage and looked to my left to see Jim laying on the ground on the ramp. Terror struck me until I saw him look at me and smile. Quickly I got out of the car to assess the situation. He had fallen when his walker got away from him going up the ramp into the house. I saw he wasn’t bleeding and called 911 then I worked to make him more comfortable and find a place for Augie to go before the ambulance came.
People who deal with ALS know that a fall is traumatic. It not only causes the injury, but more loss will go along with it. We went from Jim being independent to being completely helpless. He had broken his right shoulder, his good arm, and now was unable to use a walker or feed himself. I was suddenly looking at full-time care for him or quitting my job. This is a choice a lot of ALS caregivers face. Insurance does not cover what is considered “respite care” and it is very expensive. We have discovered that a serious illness can not only have a detrimental affect physically and emotionally but also financially. We are grateful for the help of family as well as ALS of Michigan to cover these costs.
Jim’s shoulder eventually healed but he is now mainly confined to bed. His arms no longer function, and he has limited use of his right hand. We have elected for hospice care and have a full-time caregiver when I am at work. This way of life has now become normal, but we all feel its affects. Jim who is trapped in his body and in a bed all day feels the frustrations of not engaging in a “normal” life. We do our best to keep him involved and use the tools we have, but it’s difficult and ALS drains your energy so sometimes he is too exhausted to be a part of our activities.
Augie, our son, and I feel it too. ALS has robbed Augie of the Dad who was kicking a soccer ball around with him only a year ago and I’ve lost a partner who can put his arms around me and give me a hug. We do our best to see the good in the situation. Jim has an amazing attitude and overall remains in good spirits despite everything. For my part, it has taught me to live in the moment and enjoy what we have, as well as how to ask for help and be grateful for friends and family who are there for us. And Augie is our source of joy. He will take a toy to Jim and place it in his hand and say, “Play with me Daddy”, and proceed to make up his stories with Daddy playing his part.
But the frustration of the disease touches Augie too. One night he was disappointed because Daddy was too tired to play with him and he stormed up the stairs. I followed him and upon entering his room he said to me, “I want a new Daddy”. My heart can’t help but hurt a little when he says this, but I know it’s his four-year-old way of making sense of his pain. I asked him why he wanted a new Daddy, and he said it was because he wants a Daddy who can walk. I said, “I know, I want Daddy to walk too, but he is sick, and we love Daddy just as he is.” He thought about it for a minute and then said, “I know we can take Daddy to the Doctor. Is that a good idea?” I said, “Yes buddy, but the doctors don’t know how to fix what Daddy has.” He thought again and then he said, “I know we can ask the Tooth Fairy and he can make Daddy better. Good idea? ” As tears stung my eyes I pulled him close and sad, “Yes, buddy, I think that’s a great idea.”