Nikki Dodson is care partner for her husband Ken who has younger-onset Alzheimer’s disease. They are both 37 years old. We spoke to them about their reality of being a young family with a very unique story and a huge passion for ending Alzheimer’s.
Ken received his Alzheimer’s diagnosis a week before his 30th birthday. Needless to say, it was a very difficult time. Even gaining access to some Alzheimer’s informative resources has been hard due to Ken’s young age. Grants have to follow specific guidelines related to the federal budget, and a lot of programs are senior-based. There are many programs to teach children about grandma and grandpa having Alzheimer’s, but not mom and dad. So many doors were closed to us, and we heard so many no’s.
Suddenly I was in the position of earning our primary income because Ken had to stop working. We didn’t live above our means, but we lived to our means. We are not materialistic people, but the things we had we worked very hard for. We have also made it a goal to teach our children that education and working hard is important. To provide for our family after Ken’s diagnosis, we had to sell our belongings piece by piece just to make house payment and put gas in the car. There was even a case worker that told us to get divorced so we could get more money.
Alzheimer’s is a grieving process throughout; you are losing a loved one daily. I have three kids, a husband and a petting zoo at home, so I just try to make the best of each day, even if I have to dig deep and then deeper to make it all work. I do that for my family.
The most important thing is to build a strong support group; it carries you. Nikki is by far my strongest supporter. At first I tried not talking about it, putting it out of the way, but it sunk in one day that if something isn’t done, my kids will be going through the same thing I am going through.
People need to know the truths about Alzheimer’s. They need to know that this is not an old person’s disease. They need to know that this is a fatal illness. If you don’t know the truth, you aren’t helping yourself or your family. I didn’t want to know, but if you don’t start talking about it, it’s never going to change. It can bankrupt the whole economy the way it is going. Something definitely has to be done.
There is the stigma that it’s an old person’s disease which happens with age…that you expect it, or see it coming. That isn’t the case. This is not an elderly disease. You watch some of the smartest people robbed of their dignity and independence. Ken notices the changes and sees where he is struggling, and that is why this middle part is the hardest. He now has to second guess himself or look to me for guidance regarding things he has been doing on his own his whole life. It not only affects the person with the disease; it affects the whole family dynamic. It has a ripple effect, but I refuse to let this disease win, even though I know what it’s doing.
It is hard and some days I want to give up. But I also have met some of the most amazing people. The Alzheimer’s Association knows us and our family, and it feels like an extended part of our family. Lauren Miller Rogen and Seth Rogen have done so much for us and helped us tell our story through the documentary film “This is Alzheimer’s.” I feel like I was a good person before Ken’s diagnosis, but my compassion truly came out with it. I realized that I could live in a personal hell of anger and frustration or I could make a difference. We have made it our focus to educate people, and I respond to hundreds of emails and social media contacts weekly.
Someone I know recently used the phrase “passion for compassion.” I love that. An ordinary person can do extraordinary things, and that is what we are trying to do. We are taking this negative and turning it into a positive. By sharing our story, we are helping to raise awareness and uncover the truths about Alzheimer’s.