I don’t even know where to start this story but here it goes. My wife Alison was diagnosed with ALS in July of 2016 and 447 days later she was free. My angel fought the good fight the best she could but this brutal disease had the stranglehold months if not years before we even had a clue.
We were so hopeful in the beginning because we thought she would qualify for a clinical trial but her lungs were not strong enough from day one. Her lungs were working at 42% when she was first checked and that ruled her out of all of the clinical trials at that time.
In the beginning, the symptoms started showing up in her hands and then her legs. She was in a wheelchair by September and bedridden by February of 2017. She spent the majority of her last months in bed and her last day outside was in June. I lost her in October of 2017.
I work for one of the greatest companies on earth. The owners allowed me to work from home once Alison could no longer take care of herself and this was a blessing for both of us.
Taking care of the person you love most is hard. You know what the end result is going to be with ALS and that weight and pressure are unbearable at times (at least it was in my case.) My love for Alison grew every day as I watched her body fail her. She had unwavering faith and that helped us both during her journey.
I didn’t know if I would be able to be a caregiver (didn’t think it was in my DNA) and I struggled at times. Alison would sleep most of the day when the TV was on and the dogs were around her while I was in the dining room working on my computer or making some calls. She always seemed to worry about me, always apologizing for me having to do everything. I wish I would have been a better husband while she was healthy and took care of everything like I was doing while she was sick. I would buy fresh flowers (daisies) every week and place in the bedroom for her to enjoy. I wish I would have sent flowers to her at work every week when she was healthy.
She would stay awake at night and it seemed like every time I would fall asleep she would call my name to get up and flip her pillow or cover her up because she was cold. This went on for a couple of months and I was living on less than 20 hours of sleep per week. This was really taking a toll on my mental health (I just didn’t realize it or wasn’t ready to accept it.) I finally asked Alison one night why she kept waking me up when I was trying to sleep and she said that she was scared and that just destroyed me.
Alison’s sister and her husband were a godsend to us while Alison was sick. They would come up every weekend and help out and it allowed me to mow the yard or work outside to decompress.
I thought I could do it all and boy was I wrong. I told Alison I would always be the one to take care of her and I really tried but it got to a point that my stubbornness was clouding my judgment. Kim (Alison’s sister) sat me down and said that we needed to bring in someone to help with Alison and that in turn would help me too. I was not really open to that idea because it made me think of myself as failing Alison on my promise to always take care of her. I reluctantly accepted and we brought in the perfect fit for us. God placed this lady in our lives and I will be forever grateful to her. Alison loved her and that alone was all I needed.
Caregiving is hard but rewarding in a way. I was blessed to be able to spend pretty much every moment of her final eight months by her side. I can never repay my company, Kim, Dusty, Alison’s parents, my parents and all of her friends that would come by and sit with her or spend an afternoon with her. It made her happy in the darkest of times.
I often think of what I prayed about. I would always pray for her to not be in pain (she wasn’t). I prayed for her to be able to speak to me until the day she passed (she could) and I prayed that she would pass away peacefully (she did.) I sometimes wonder if I was praying for that for my benefit as much as hers.
I am not the same person as I was. These moments changed me at my core. I try to be the person I was and it is just not in the cards.
I worry about the families that this disease has destroyed and the ones it is currently destroying. I made a promise to Alison that I would do everything in my power to raise funds for research and I will continue to do that until they find a cure or treatment.
I miss her more than I ever thought I could miss anyone. God blessed me when he put her in my life and I will be forever grateful for everything she brought into my life.
Bottom line, do what you can for the people you love while they are healthy. If you do, you will have no regrets. We missed out on a lot of things and that makes me sad but we got to do a lot of great things too.
I miss her every single day and nothing can ever replace the love I had/have for her.
Jamey Spakes
447 Foundation