My wife, Deb, and I have been married for 46 years. We met at college. We were both part of a large group of friends who hung out together quite a bit, and even travelled together. Deb and I had a lot in common. We were both preacher’s kids (“PKs” to those in the know), shared a similar set of values, and enjoyed a lot of the same activities. We even both played French horn in high school! We had spent so much time together, and knew each other so well, that we discussed marriage on our first official date! We decided it was a good idea.
When we were young I practiced law for a while, and Deb worked as a family and school counselor. However, the church had always been a part of our lives and after a time it called us back. I became a Lutheran pastor, and Deb worked as the church’s Family Life Ministry leader. Over four decades of life and marriage has brought us three sons, one daughter, nine grandchildren, and lots of happiness.
The Diagnosis
It was our children who noticed Deb’s symptoms first. She would make plans and then forget them, or she couldn’t remember how to get to a place she’d been many times before. She occasionally even ran a stop sign on a familiar road. Finally, my children staged an “intervention” with me to discuss their mom’s symptoms, and I had to face that I had been in denial about what I was seeing. I had to start recognizing and stop excusing the same behaviors they had been noticing. Their influence prompted us to see a neurologist, and in 2011, at age 60, Deb was officially diagnosed with mild cognitive impairment. We are extraordinarily lucky to be patients of Dr. Douglas Scharre, at The Ohio State University. He is a leader in the Alzheimer’s field, and even developed the “Self-Administered Gerocognitive Exam” (SAGE) that detects early signs of impairments. Through his office we were able to put Deb on a medication study that I think really helped her. And of course the study advances the science so it will help others as well.
Deb had an uncle with dementia, but this was my first experience with it. I got all the information I could. I attended symposia given by her neurologist, went to Alzheimer’s Association meetings and caregiver support groups, did internet research, read books – anything I could find that would help me understand what was happening now, and how to prepare for what was to come.
ADAPTING
Part of that preparation involved changing our living situation. We are very blessed to live close to all our children, who have been a tremendous support system for us. At our daughter and son-in-law’s suggestion, we made the decision to move in with their family. We had a home built for us that was designed based on our particular needs. It is a split level house with an apartment area for Deb and me that is easily accessible to the rest of the house, so we can interact with our daughter, son-in-law, and grandchildren. A representative from the Alzheimer’s Association even visited to give us suggestions for keeping the house safe for Deb and easy for her to navigate.
We all have a need to be useful, and Deb is no different. She likes to contribute to the household as much as she can. Everyone in the house always has folded laundry thanks to her! She will do dishes sometimes, too, and everyone knows to secretly check afterwards to make sure the dishes are actually clean. Such activities are good for her, and keep her active.
We all do what we can to keep her busy and stimulated, and keep her engaged in a “normal” life as much as possible. I take her to the YMCA a few days per week for exercise, she sings in the church choir (with the help and guidance of the rest of the alto section), and she and I go to dinner at our other children’s houses multiple times per week. This is great for us as we get to have a change of scenery and interact with other family members. The grandchildren are particularly good with Deb. Sometimes all the noise and bustle of family gatherings will become too much for her and one of the kids or grandkids will take her to a quiet spot to talk or color (a favorite activity of hers). These visits also give a break to the family members that we live with. This was recommended by the Alzheimer’s Association representative, who stressed the importance of caregivers taking a break to recharge.
CHANGE
Obviously, our lives and relationship have changed quite a bit since her diagnosis. Verbal commands have become difficult for her, so I have to show her how to do things. For example when I tell her to wash her hair I have to mimic rubbing my head so she understands what to do. I like to listen to podcasts while driving, but they are overwhelming to her so we just listen to some soothing music instead. Travelling any distance has become difficult because she doesn’t have a good sense of time and quickly gets frustrated. After years of family vacations, this year will be doing a “staycation” to accommodate Deb.
The biggest difference is that we can’t talk about anything of substance anymore. This is a real loss to me because she was always my sounding board. She is a creative non-linear thinker, and I am more of a straightforward problem solver. I always valued her perspective and opinion on issues that came up at work or what was happening with the family, but we can only talk about surface things and what is happening now.
RESPITE CARE
I’m semi-retired and every once in a while I have to travel a few days for work. Like many people, our children are busy with jobs and their children, and aren’t available to care for her for that length of time. My daughter and I visited several local facilities that offer respite care services. That is when we visited The Ganzhorn Suites. I really liked how the facility was designed based on the needs of memory-care patients. Deb has done two short stays there (a few days each time), and has done very well. We made sure she had lots of visitors and phone calls (but not from me because we thought that might be confusing). I’ve been to some of the information sessions they provide, and I liked the set-up there so much I even adopted some of their special touches such as the red light in the bathroom for nighttime visits.
PREPARED FOR THE FUTURE
For families who are new to a diagnosis of Alzheimer’s I recommend getting lots of information, being patient, and talking about it freely. We have two sayings we’ve adopted that the whole family uses: “It sucks,” (the “it” being Alzheimer’s disease), and “it is what it is,” meaning we can’t change it, we just have to deal with it. I also recommend travelling while you can, keeping your loved one interacting with lots of people, and being prepared for the next stage of the disease. For example, from my reading I know that incontinence is a common issue. Deb doesn’t suffer from this yet, but I’ve covered the bed in a water-proof liner so we are ready if it does happen.
There can be an upside. Deb’s diagnosis has helped me to calm down about accomplishing things and has simplified my life. I am learning to “stop and smell the roses” a bit more, and I’ve had to learn how to do more domestic things for myself like cooking. As Deb’s disease progresses I know it will be more challenging. At some point we are likely to no longer be able to care for her at home, but we are not there yet. I’ve been told by others who’ve gone before me that “you’ll know when you know” that it is time. Until then we will continue to take care of her as a family. I love her, even though that “her” is changing. But isn’t that life? We all change, including me!