Even though Lori Payne was diagnosed with early-onset Alzheimer’s when she was 56 years old, she doesn’t let that stop her from laughing and enjoying life with her family. The Payne family has come together around Lori’s diagnosis and chronicles their Alzheimer’s journey on Facebook through their group, “The Young & Forgetful.” You can find everything from hilarious game nights to heartfelt videos from friends and family on this page. WAM interviewed Lori about what it’s like living with early-onset Alzheimer’s and how the disease has made their family stronger. Her husband Rod and daughter Amanda Jo chimed in.
Read the Q&A with Lori Payne and her family below.
WAM: You received a diagnosis for early-onset Alzheimer’s at 56 years old. What did this diagnosis mean for you and your family?
Lori Payne: My first thought was that my family will have to watch me and take care of me when this gets worse. It made me really sad to think of them having to do that for me.
Rod: That’s really what you thought? Your first worry was about us?
Amanda Jo: I think this is a true showing of my mom and how she worries about everyone else before herself.
Lori: Mhmm. I just couldn’t believe what I was hearing, it didn’t seem real. To this day I still don’t feel like I have Alzheimer’s. Maybe some days I feel it when I’m walking around all day looking for my coffee or my keys but I don’t mind it.
Rod: [What did this diagnosis mean to you?] That I could get away with a lot more sh*t now! But really it was like someone punched me in the face. It just felt wrong and there’s no reason she should have this.
Amanda Jo: I think I knew deep down that it was going to be a positive diagnosis but to actually hear it coming from the neurologist was almost surreal. Mom looks to me for anything to do with medical issues, so at the appointment I didn’t want her to see panic or fear or worry on my face that would make her feel those things. I wanted to show strength. My brother was shocked and just overly sad. Our whole family was together when we got home from the appointment and I think every single one of us was numb and in tears. We’re not a super emotional family but this was just one of those times there really wasn’t anything else to do.
WAM: Receiving a diagnosis like this really changes the family dynamic, but what are you doing to not let this disease stop you from living a full life?
Lori Payne: The best thing for me is to surround myself with family and friends. Just people in general. Trying to live life as normally as possible. I’ve always been a “people person” in my job and home life, so keeping those contacts and relationships going is really important to me. I have this snow globe that was given to me by a dear business associate who’s grown into being a member of the family. It says “hope” inside and I have it on my windowsill. Every day I get up and touch that globe and pray for a cure. I also have a calendar that I write in every day of what I do and who I get to see. That is always such a blessing to look back at and realize how much love and support is out there.
WAM: Early detection is extremely important. What was this process like and how long did it take to receive this diagnosis?
Lori Payne: I don’t remember —haha. Amanda, you’re going to have to answer this one.
Amanda Jo: We started noticing memory issues a few years before the actual diagnosis. We had always chalked it up to her stress levels from work and what-not. I mean she was early 50’s, that’s way too soon to be Alzheimer’s. We eventually convinced her to get checked out just in case. She was sent to a neuropsychiatrist who also said it was most likely stress. So then it was on to the neurologist who recommended the PET scan. Mom said everyone was over-reacting and she didn’t need the scan, so we let it drop.
I think about a year and a half later, we started the conversation again and decided to this time to follow through. I remember sitting in the office with her and the doctor asked her to draw a square with an X in it. There was even a picture of it so she just had to copy what she saw. She couldn’t do it. I think that’s when I knew. I wanted to laugh it off and say, “really mom? You can’t copy a square?” But I could see it in her face that there was a disconnect somewhere. The PET scan was ordered again and this time she wasn’t going to talk us out of it. A few weeks after the scan I went with her to get the results.
One of the first questions she asked was what the chances are that I would get it too and if I should get tested. That hurt because this wasn’t about me. This wasn’t my diagnosis. Yet her instinct was to see if this would affect me. We had to redirect her to what was important now, where to go from here. I know I was kicking myself for not pushing for the scan years ago and wondering how much of a difference that would or could have made. We started her medications right away and have been very diligent with them ever since.
WAM: Do you have any advice for people going through the same thing?
Lori Payne: My advice is to just keep smiling and plugging away. There will be a cure someday. I know it. I don’t know if it will be in my lifetime, but it will happen. This disease is not the end of the world, so my advice is not to be a recluse. Find the people that keep you going and be with them. Keep making moments, even if you won’t remember them later. Reach out to people and relive the memories that made an impact on them as well as yourself. Keep having fun and laughter, even on the hard days. But on the hard days, make sure to reach out.
WAM: Tell us a little about your Facebook page, “The Young and the Forgetful.” Why did your family start this page?
Lori Payne: Well, our family is pretty entertaining. When we are all together there is always laughter and we’ve said we should probably have our own show. So we decided to share our lives now and let others know that yes we’re going through this, but it’s not a death sentence. Life can still go on like normal, but maybe just redefining what “normal” looks like. We wanted to grow our situation and story into something that could be a resource and help for other people in similar situations. Whether you yourself have been diagnosed or someone close to you has it, you are not alone, you do not have to suffer in silence. You can reach out to any of us on Facebook and have someone to talk to. Or even if you don’t relate at all, maybe you can watch one of our videos and it could brighten your day, bring a smile to your face.
Right now it’s mostly light-hearted videos but it shows who we are. Even when things get worse, I’m hoping to stay alert and happy. When I have a bad day I always go back to our page and re-watch videos until I’m crying from laughter and not sadness. We want to bring that energy to others. I want to do something to make someone else happy. I want my story to be one that can bring joy, not just sadness.
If you want to follow Lori Payne and her family on Facebook through their page “The Young & Forgetful” click HERE.