Back in May 2002 my husband was given the diagnosis of ALS with a possibility of 1-5 years left to live (without a ventilator). It was devastating. He started telling me how to care for the trees he had planted and crying to know how I would manage without him.
We started going to the ALS clinic every 3 months. They were an excellent source of support, always knowing what he would need just before we really needed the equipment. It was very hard seeing other patients who were further along in the disease. I would cry at every visit.
He Chose Life
In March 2008, Good Friday, our daughter called me at work that her dad was really struggling to breathe so she was calling 911. This had happened several other times but this time he barely made it to the hospital. The doctors intubated him and nervously told me that he was going to need a tracheotomy. He was going to need to stay on the ventilator. I very calmly told them we had talked about it. We knew it would come to this one day. Our middle daughter was getting married in a few months, and he was going to “walk” her down the aisle. He chose life. Being on the ventilator he was more at peace, not struggling to take a breath on his own and getting exhausted; especially when I had him out and about (but never complaining).
The little he could do was lost in the 2 month hospital stay, and he would need 24 hour care, so I resigned from my job. I was terrified to bring him home.
What would I do if the ventilator alarm went off? His whole life would depend on me!!
It was time to get my husband a hospital bed; I stored away our queen size bed and bought a twin sized bed for me. This was very difficult as I knew the next time I pulled out our bed he wouldn’t be with me.
Despite the hardship of a ventilator, we LOVE having him with us!
What I have tried to do is keep the family running as normal as possible. We went on our summer vacation to the lake just a couple of months later. He “walked” our daughter down the aisle in August of that year. Three years later, he took our youngest one down the aisle as well.
Since my husband was put on the ventilator, we have welcomed several grand babies. He has happily given rides on his wheelchair to all of them. We have continued to go to the lake in the spring and summer, taking along all his equipment and supplies. It’s not easy, but the grandkids love to go. We enjoy all the happy times too.
There have been times when he gets down, gets cranky, etc., but by the next morning he has a big smile on his face again. And I thank God. Oh by the way, a few months ago I brought out our queen size bed again and placed it in the spare bedroom. And no tears, because he is still with me.