Young Onset Alzheimer's Caregiver Support

My name is Kris. I’m 55 years old. I’ve been married to my wife Kim for twenty-five years and have three adult children. My two oldest are married. My youngest is still at home and just starting a career.

My wife, Kim, is 53 years old. A few years ago, she lost her job. At the time, I thought that her employer was trying to get rid of her because she was a one-on-one teacher of special needs children in our local elementary school system and the children were not in the schools due to the pandemic. Later, after recognizing serious cognitive issues, I realized that she was no longer able to do her job. Eventually I was able to get her tested to figure out what was wrong. She got an MRI and was referred to a neurologist that diagnosed her with dementia. It was quite shocking. The next step was a spinal lumbar test that confirmed that she had Young Onset Alzheimer’s. It was 2022 and she was 52 years old. How could this be?

Over the course of the next year, I joined a support group and learned as much as I could about the disease and what I could do to prepare for our future. I set up cameras in the house to make sure that she was safe while I was in work. We saw an elder attorney to take care of financial matters. I reduced my work week to 32 hours. I stayed home from work more. I have been doing side hustles and saving and investing for a couple of years to prepare for the inevitable.

She’s happy most of the time, but at this stage in the disease she forgets what we discussed just seconds before and no longer has the ability to do routine things like answer a phone call or brush her teeth.

I know that my future as her caregiver will become even more challenging and eventually I will not be able to care for her in the final stages of this absolutely horrible disease, but I am determined to care for her at home for as long as possible.

Recently, some things have happened that lead me to believe that she will need me home full time sooner rather than later. One day I was working on my car in our barn. She came with me and hung out while I worked. Several times after that day, if she couldn’t find me, she would wander across the yard in her slippers and head to the barn looking for me. I didn’t see her on the cameras that we had so I left work and went home. What if she thought I was at the store and attempted to drive the car or walk up our busy street? She also recently started to have bathroom issues requiring some periodic assistance.

How could I afford to stay home to care for Kim? I could downsize, selling our house and buying a smaller one, but she is so comfortable in the house we live in. I could withdraw from my 401k after leaving my job to pay off my mortgage, allowing me to live off of my side hustles, but taxes for pre-retirement age withdrawal were around 30%, significantly diminishing the nest egg needed later in life. I could cash in my investments and pay off my mortgage, but this would destroy the money that I was planning to live on until I could formally draw from retirement funds. I also have a vested pension but there is a penalty for early withdrawal leaving an amount that would be insufficient to live on. I could increase my side hustle but too much of my time would be necessary for it to become large enough to live on.

I recognize that I am fortunate to have options, however these options have notable consequences. I also recognize that I am a caregiver in a very small percentage of the population dealing with the horror of Young Onset Alzheimer’s. This is why the funds of this GoFundMe campaign will go towards paying my mortgage while I am out of work and towards any support services or memory care necessary to take care of Kim, giving me the confidence to make changes in my life necessary to allow me to care for Kim without compromising our future ability to support ourselves. My wife Kim is the love of my life, and I want to be there for her providing the best care possible, and it is with much gratitude that I accept your generous donation so that we can live happier while being more together.

September 2024 update: Kim is now in stage 6 of 7 using the F.A.S.T. scale. She is both urine and fecal incontinent which means that I have to make sure that she goes to the bathroom frequently and must keep her clean to avoid urinary tract infections. Showering and feeding her are challenging. She can no longer be left alone and requires 24 hour care.

I took medical leave per the Maine Family Medical Leave Act. This gave me three months to care for Kim full time while retaining our health insurance. That period has ended and, as of September 13, 2024, I have resigned from my job after 28 years to continue to care for Kim full time.

I have received donations of old books and have regular weekly book sales on eBay. The funds aren't enough to pay for my mortgage and bills. She will go to Memory Care (11k+/month) in a home when she is in stage 7 because she will need professional care beyond what I am able to provide. I don't know when that will be. It's different for everyone.

I am thankful for the donations that have been made. They have allowed me to stay home and care for Kim.

Your generous donations are appreciated.