By: Kathy Couch, Alzheimer’s Association volunteer, family caregiver and advocate
We fell in love in 1984
Mike and I met in 1984 at Satyricon, the longest-running punk venue in the western United States, when some friends of mine were playing. We had immediate chemistry and we’ve been together ever since.
My friends, who knew my usual dating MO, were stunned to see me hit things off with someone like Mike. “He’s really nice,” people would say, “But he’s so normal!”
And he was normal; steady; and just sweet.
We got married a few years later and, when Jack came along, Mike was a really good dad. He also had an amazing talent for choosing perfect gifts for me. He got me my first iPod, and I didn’t even know that I needed one; but having my own constant soundtrack brought so much joy to my life. The last perfect gift I got from him was when he could still drive: It was a giant Pendleton blanket (I’m always cold). I treasure that blanket and always will.
And then we got the diagnosis
Alzheimer’s is the only disease I know of where, when it enters your life, you are completely on your own. And we felt very alone when we received the news that Mike had been diagnosed in April of 2014. Specifically, he had been diagnosed with Younger-Onset Alzheimer’s, an often misunderstood and misdiagnosed form of Alzheimer’s that affects people under the age of 65. Approximately five percent of Alzheimer’s cases are younger-onset.
And just like that, our world fell apart. When we should have been planning our retirement, we started planning our shortened future. I delved into everything without guidance, but I did my best. One of the first things we did was to sign up for an Alzheimer’s Association educational class about what to do when you get a diagnosis. From that class, we learned about the complex legal and financial needs we were going to have to navigate. The elder-care attorney that presented the class was so good that we hired him.
Safety was now a major concern
I still work full-time and I became Mike’s caregiver alongside our adult son. After some time, I started to really worry about Mike’s safety at home. I have set up a tracking app for our phones, installed cameras and have explored many ways to keep track of him (since him keeping the phone on him may be hit or miss). Despite these efforts, I am constantly in a state of high alert. I also looked into getting more help. Adult day services are around $100 a day, as are home health aides. Memory care costs more than what I bring in with my job, so that wasn’t possible.
The hardest part has been watching Mike change over the years. He was the steady, dependable person who made me feel safe and loved. We still love each other, but not like partners.
Now Mike sits in the same place, in the same room, staring at nothing. I often wonder what is going on in his head: is he afraid? Bored? Sad? Maybe it’s just standby-mode. I will never know.
Caregiving was a new challenge
Caregiving is an exhausting marathon, I am constantly alternating between sad and angry. I’m exhausted. It’s exhausting to make all the decisions, direct the family, maintain home repairs and try to salvage the life I’ll have on the other side of this journey. I have become a completely different person. The joy that was a big part of me has gone away. After two failed clinical trials, I’ve lost my hope for any changes in Mike’s disease.
Mike was progressing, of course. As the months-long pandemic limited most human contact, the progression has sped up tremendously. We have home healthcare workers coming in a couple of days a week, but it’s not enough to meet his care needs. I feel more like a jailer than a wife: I’ve taken Mike’s bicycle away. I’ve taken away his debit cards. I’ve probably taken away what remained of his dignity.
Mike needed more care than he could get at home
I finally realized that this couldn’t go on. It was destroying us, each in different ways, and Alzheimer’s can’t take us all. I have since made the painful decision to place Mike in an assisted living community. It’s the only way that I can try and salvage our poor family. I want Mike to be with people, and do things, and have people taking care of him that know what they’re doing. I’ll visit him every day and we can be together again, before everything got so tense, and maybe I can feel like a wife again, instead of his mother.
This is the right decision, but this is the love of my life, and I’m unbearably sad over it. We’re in the middle of the process, so I haven’t yet had the experience of taking him to his new home.
In many ways, Alzheimer’s and the stress of caregiving has made me feel like I’ve failed. I haven’t even been able to get away for one night – just to recharge. It’s just me, trying to hold everything together. Luckily, we both have good friends, who check in with us, go out and do things with Mike and bring us dinner now and again. I wish I could wrap my story up with a clean, empowering, happy ending, but that wouldn’t be real. Alzheimer’s is devastating. Some days are easier than others, but this is not easy.
I advocate for families like ours and people like Mike
I can’t control the disease, but I can do everything in my power to work toward a cure and support families like ours. So, I advocate and participate in Walk to End Alzheimer’s. Advocacy comes naturally for me from the work I do to make change. I want people to be aware that younger-onset Alzheimer’s exists. Mainly, I don’t want anyone else to have to go through this.
Walk to End Alzheimer’s is one thing we look forward to every year. Our team, Friends of Mike, has been going strong for six years. Mike’s friends from college join us, along with his friends in the United Brotherhood of Carpenters. It’s a day that we look forward to every year. We feel the love and support there and it’s beautiful.
Find help. Start early. Don’t give up. Caregiving is an exhausting marathon.
The Alzheimer’s Association offers a free, confidential 24/7 Helpline at 800.272.3900. Call to learn more about educational programs, support groups and other community resources.
For the latest stories, subscribe to alzblog.org