I was a college professor and nurse with my doctorate in education when I started having memory problems that were concerning me. Students had complained of inconsistent homework assignments, and my son Dan noticed that I was repeating myself in our phone conversations. Then one day while giving a speech in Washington D.C. about medical ethics, I totally blanked about where I was and why I was there – in the middle of my speech. That was a major turning point.
This was in 2014, and I was living in North Dakota. My physician acknowledged that she had noticed a change in me as well, and I was referred for neuropsychological testing. After completing those tests and a follow-up evaluation at Washington University in St. Louis, my diagnosis was confirmed as mild cognitive impairment (MCI).
Before I fully adjusted to living with this disease, the news was devastating to me. I couldn’t teach any longer; teaching completely depends on your ability to think on your feet and plan – things I was no longer able to do consistently. It was also devastating for my family, my always being so bright and articulate and then suddenly having speech pattern issues. The uncertainty of where “it goes from here” was overwhelming for them, but we have all adjusted and are doing very well.
My sister Mary and my son Dan and I are a team. We have made some heavy decisions – where I was going to live (I moved in with Dan), how we were going to gauge what I could and couldn’t do, what was safe, what wasn’t. We put plans of action into place. Sometimes it’s the little things, like how Dan calls me before he leaves work so I can start dinner then and not have the stove on all day.
I didn’t realize until I received this diagnosis that this support was always there. Not many people have a single 30-year-old son who would take them in and disrupt their life for the sake of their mother, but Dan does it without any regret or resentment. I didn’t realize how steadfast he and my sister were. They both instantly rallied and started taking care of everything I needed. I am in awe of them, and eternally grateful. I can’t imagine my life or going through this without them.
I have always done most or all of the cooking on Thanksgiving, but this year everyone brought something and I cooked the turkey and dressing. I knew Christmas would be a challenge, so my sister will be hosting Christmas this year. I have to change things around a bit to accommodate the fact that I’m not functioning at the same level I was previously. It doesn’t decrease the amount of joy and love we have at Christmas – in fact, we appreciate it more. My sister’s husband is also living with dementia, so we all take advantage of the time we do have together.
This Christmas, we will open half of the gifts on Christmas Eve and half on Christmas morning. We used to celebrate Christmas mornings with our immediate family but now we try to do more things together as an extended family. We are aware that we have more limited time and a need to be together. And actually, this arrangement has made it more fun!
I miss teaching a lot; I worked really hard to get the point where I could teach full-time. It was my goal for so long and I only got to do it for three years. Having said that, I’m a person who believes you just have to adjust your sails and go where the wind is taking you, even if it’s a place you weren’t planning on traveling.
And sometimes we do get to choose where we travel. This Christmas day, after we go to my sister’s home, my son and I are going to drive the 14 hours to North Dakota to see friends I previously taught with who I haven’t seen in two years. It’s people like them, my family and the friends who have stuck by my side who remind me that I am really lucky to have the time that I have. The life I am living now is not the life I planned, but I am living it.
To everyone living with dementia: do not put pressure on yourself to be what you aren’t anymore. Don’t force yourself to be excited or joyous just because it is the holiday season. You will feel better if you relax and be yourself and do what you can do. Don’t worry about what you can’t do anymore. Don’t try to live up to other people’s expectations. If you’re the person who has always cooked all of the food for the holiday gathering, it’s okay to be the person who does just some of it now. It is much more enjoyable than trying to be what you can’t be. Celebrate the season by being you, and giving what you can. Savor the moment.
About the Author: As an Alzheimer’s Association 2016 National Early-Stage Advisor, Lonni Schicker would like to help reduce the stigma surrounding a dementia diagnosis and raise awareness for the value of an early diagnosis. She enjoys cooking and crafting and lives in St. Louis with her son Dan.