A Caregiver’s Journey with Early Onset Alzhiemer’s
My name is Kris. My wife Kim has Early Onset Alzheimer's. She was diagnosed after she failed a couple of simple cognitive tests. An MRI revealed that her brain had shrunk, and a spinal lumbar tap showed amyloid proteins. The final diagnosis of Alzheimer's was in October of 2022. Since then, I have kept a daily journal. I've read books, done online research, and watched many YouTube videos to learn as much as I could about the disease. I joined a support group through the Alzheimer's Association. I went to an elder attorney and got my financial future in order and got durable medical and financial power of attorney for Kim. Each quarter in my journal, I reflect on what stage Kim is in. At the time of this writing, January 2024, I believe Kim is in stage 5 with some behaviors from stage 6 starting. I am lucky to have the option of working from home three of the four weekdays that I work. I'm also lucky that my son Zachery, who is the youngest of my three children, is still at home and has adjusted his schedule to be home on the day that I have to go to the office to work. As a caregiver at this stage, I feel that I want to take care of Kim as long as possible. The more I listen to Dr. Tam, the more I realize that this approach is probably not good for my long term health. I'm already pretty exhausted. I have some help though. Every other week, my sister takes Kim out for a few hours. They go to lunch and go shopping for small things that make Kim happy like costume jewelry bracelets. I've had to put her good jewelry away because she put her wedding ring on the wrong hand one day and it was too tight. Her finger was blue before I noticed. Her sister will also take her for several days once in a while. They go to craft fairs which Kim really enjoys. Aside from how Kim will progress, my biggest fear is having to leave my job to take care of her before she goes to memory care. I've reduced all my bills to the bare necessities but still have a mortgage. I know that everything will be fine, but the level of uncertainty in my future is so high. I set up a GoFund me "Young Onset Alzheimer's Caregiver Support" but haven't shared it with anyone because I feel guilty. I'm better off than many people and thankful for what I have. If only I could have had an earlier warning about Kim. Things would have been different. Young onset Alzheimer's is so challenging and disruptive. If I had anything to share with people new to this horrible journey, it would be to learn as much as you can about the disease and take care of yourself. I cherish every minute that I have left with Kim but also look forward to the day when I am free from witnessing this slow death.