How would you react if you were diagnosed with Alzheimer’s at age 46? We are learning more and more that Alzheimer’s has no age limit. Early onset Alzheimer’s is a scary diagnosis, and one that Kris Bakowski knows about first-hand. We were given the chance to speak with Kris about her diagnosis in this exclusive interview.
Kris Bakowski is a mother, an Athens, Georgia resident, and a victim of early-onset Alzheimer’s. Diagnosed at the age of 46, Kris is now 57 and has been blogging about her diagnosis since 2003. The blog, Creating Memories was inspired by her son and gives her an opportunity to advocate for awareness while also helping her stay in touch with extended family. On a larger scale, her blog is helping to change the conversation about Alzheimer’s by putting a face to the disease and eradicate the stigma that comes with Alzheimer’s.
Question: What was the first thought to go through your head after your diagnosis? How did you react?
Kris: The first thought I had after my diagnosis was, “at least I’m not crazy.” I was relieved to find the cause of my problems. Now as a family we needed to regroup and figure out how to deal with the problem. I also felt guilty because I knew that my family was going to be burdened with me sooner or later. They have the hard part – I have the easy part. Also, since I carry one of the Alzheimer’s genes, I worry that I have given that to my son. If I have, I can only hope that there will be a cure for this dreaded disease.
Q: Does your writing help you process and remember information and events?
Kris: The blog does help me remember things as I go back to read things. However, my blog also frustrates me because I have such a hard time getting the words from my brain to my fingers to type it. I know exactly what I want to say; I just can’t get it in the written form. I can’t even tell someone what I want to say – it is just stuck in my brain. That is why when you read my blog you will see some long gaps in between entries – I am just having a hard time expressing myself.
Q: How did your son motivate you to start your blog?
Kris: Starting the blog — I did not expect the reaction I got when I told people of my diagnosis. People started treating me differently. Many people would no longer associate with me. I didn’t realize how little people actually knew about Alzheimer’s. My son suggested I start a blog to help everyone understand what I was going through. It was an opportunity to teach people about the disease. Also, my extended family does not live close and this was an opportunity for them to keep up with me.
Q: What are your goals in telling your story?
Kris: The goal in telling my story is to show people what it is like to have Alzheimer’s, but also to help caregivers understand how they can help. So many people with Alzheimer’s cannot speak for themselves so I hope I can communicate for them. In the early stages of the disease when people can ask for help, it is important to be very specific. For example, if I have difficulty making change I ask someone to help me count out the money, rather than just saying “I need help.” In time, your friends and family will know what you need help with and can help when the time comes. But we have to tell people what we are having problems with instead of thinking they should know. Caregivers have communicated to me that they can better understand some of the things their loved ones are going through after reading my blog.
Q: How do you think we can change the stigma associated with Alzheimer’s?
Kris: One of the main ways we can change the stigma associated with Alzheimer’s is to change the way we look at it – move it from a disease to a CAUSE. People also need more education about the disease and not be ashamed of it. Alzheimer’s is a disease just like diabetes, Parkinson’s or cancer. It needs to be recognized as a disease not just “something people get when the age”. We also need to be a voice in changing the way our lawmakers view this disease in order to make it a priority to help find a cure.
Q: We know you are a huge fan of golf, who is your favorite golfer?
Kris: I have several golfers I like for different reasons… Arnold Palmer because he reminds me of my late father, Steve Stricker because he is so down to earth but my favorite golfer of all time was the late Seve Ballesteros. And, of course, who doesn’t love Bubba Watson!
Q: What advice do you have for others who have recently been diagnosed with Dementia or Alzheimer’s?
- Don’t try to deal with your diagnosis on your own. Seek support from your family and friends. Find a support group to get involved in.
- Although you may feel alone, you are not.
- Try to stay active both mentally and physically.
- Learn to ask for help when you need it.
- Eat right and exercise.
- When you have a problem doing something, or you are confused, or forget things, you can’t be hard on yourself. It’s the Alzheimer’s talking – not you. Caregivers need to understand that their loved one doesn’t have total control anymore and they are not doing these things on purpose. It is hard to see your loved ones struggle with simple things, but your assurance that they didn’t cause their behavior can go a long way.
- Live in the moment. Enjoy the little things. Laugh out loud.
- If you are diagnosed at an early age help your family come to decisions about care for you later on. Discuss who is going to take care of you, what things are important to you, and get any legal issues resolved while you still can be a part of the conversation.
Q: What is your favorite resource for Alzheimer’s information?
Kris: The Alzheimer’s Association has lots of information as well as a toll free 24/7 phone helpline (1-800-272-3900) which connects you to a trained social worker. If you are a younger on-set person with Alzheimer’s (under the age of 65) there are lots of books out there written by people like yourself. We all don’t have the same symptoms, but our experiences are similar.
Has someone in your family been affected by early-onset Alzheimer’s disease? Do you have any tips or stories to share? We welcome your comments below.