Chronicling The Battle With Dementia

Author:  Jerry Schill

I ended last month’s post with Pam “surrendering” her car keys, which means I’m now a chauffeur for shopping, doctor appointments, and so on. Getting groceries was an interesting experience as she would reach for items we didn’t need. At first I didn’t notice because she would put them in the shopping cart while I wasn’t paying attention. Rather than creating a scene I would just leave it go. I think at one time we had a half dozen jars of olives in the pantry! I started paying more attention when we shopped, and at first would let her know we don’t need what she put in the cart, but that would sometimes lead to “unhappiness,” so I would just put the item back on the shelf when she wasn’t watching. Most of the shopping now is done when a caregiver stays with her. I’m not one that likes to “shop.” Rather, I got to buy what I need and get out of the store. There are times when I reflect on the “good ‘ol days” when Pam would drive to the store and do all of the shopping.

In January 2023, after family discussions and advice of her primary physician, she started additional testing including oral memory tests, blood work and brain scan over a period of several months. The waiting time was a bit long to see the neurologist, so that was in July. I thought it interesting that I could surmise what the diagnosis was by looking at her patient portal in advance of the appointment with the doctor. The new diagnosis was Alzheimer’s. Labels don’t really mean much. The official diagnosis does not change your experiences in dealing with it.

I am going to revert back to the spring of 2011, or 3 years prior to us noticing Pam’s memory loss. That was the year our daughter and son in law, Sarah and Butch Midgett opened a retail toy store in Nags Head, NC. Pam and I help them prepare the store doing some painting and using our truck and trailer to deliver store fixtures. Their grand opening was in April and sometime in the summer they asked if we would portray Santa and Mrs. Claus after Thanksgiving. Why not? We both had the right hair color! They rented the outfits so the Saturday after Thanksgiving we were the Claus couple for about 4 hours. We enjoyed it so they purchased the outfits for us for 2012. Over the next several years we wore the suits at the toy store and a few events in Craven and Pamlico Counties. We purchased new outfits and had a great time. Pam was an excellent Mrs. Claus, with children reaching for her when they were too frightened to go to that scary Santa.

About 2016 we noticed changes in how she portrayed Mrs. Claus as she would be vocal, times if a child was not behaving or if one in diapers needed a diaper change. Let’s just say Mrs. Claus was not very jolly at times. Santa is supposed to be a jolly old elf and Mrs. Claus is expected to be so as well. In 2017 Santa was solo at the toy store while our son took Pam out for lunch and shopping. It might not sound like a big deal but that took an emotional toll on me because it forced me to realize things will never be the same. We were Santa & Mrs. Claus in downtown New Bern for a couple of years as part of Beary Merry Christmas, but her last year there was 2022. While I no longer go downtown, I continue as Santa at churches, community events, an occasional parade and home visits. The kids help out a lot in the Christmas season taking care of their Mom, and when they cannot I depend on paid workers or volunteers to stay with her.

The combination of looking like Santa even without the red suit during the Christmas season and dementia adds a bit more pressure. Santa is expected to be jolly at all times with no exceptions, so when things get challenging out in public, one needs to be aware of who may be watching! It’s hard to exclaim “Ho-Ho-Ho” while gritting your teeth!

Next month we’ll write about the challenges with the care-giving issue.

Author:  Jerry Schill

Last month I explained the chronological journey of our memory loss, dementia, and Alzheimer’s. We ended the post with our first “family” visit with the neurologist and her comment to “treasure the memories”.

One consistent thing about this disease is that nothing is consistent. We have an attached garage to the house and a two-stall garage out back where the workshop is. There was a period when Pam was my shadow, even following to the bathroom. She was very unsure of everything and was frightened if I was out of sight. When going out to the garage she would follow me there, and it was hard to get her to sit down for a while. While that may seem endearing, it was downright aggravating when trying to work on anything especially if it involved moving or working on a vehicle. That went on for quite some time, but it has evolved to where now it’s hard to convince her to go outside. If I’m working in the yard or the garage, I like to be able to keep a close eye on her for a number of reasons, but I also like her to get out and get fresh air. While this change happened over time, I didn’t really notice until one of the kids mentioned to me that Mom wasn’t following me around like she used to.

Taking meds has gone from easy-peasy to quite a challenge. There is one pill that has been the most problematic, and after you’re convinced it’s swallowed you find it under the table under the recliner or in the bedroom. It’s a pill that does not dissolve easily so she kept it under her tongue until we were not looking. As a result, I now grind her morning pills and dissolve them in very warm milk or a hot drink. It’s better to dissolve and add to cereal because it has a very bitter taste. It’s been working very well, although grinding some pills isn’t recommended. Sometimes you just must take the best, maybe not perfect, option.

Me and the kids agreed that her condition was progressing, so we made another appointment with a different neurologist in March 2018. Again, it was a family visit that came about after more testing. The new diagnosis went from Mild Cognitive Impairment to dementia. One of the kids asked about her driving and he strongly cautioned against it. I told the doctor that she hasn’t shown any problem driving up to this point, but he said the problem comes when she’s on her way to go shopping and encounters a detour due to an accident. She could end up miles away and he cited some examples of unnamed patients who did just that.

I’ve heard of many examples of loved ones who have gone through a literal hell when taking the car keys. However, I didn’t have that problem. Pam didn’t offer any resistance at all, but of course, it now meant more duties for me to do the driving. She was still able to shop, it was just the driving that was the problem. Now shopping wasn’t without it’s challenges as well, but we’ll cover that next month.

Author: Jerry Schill

Words such as dementia and Alzheimer’s were not as prevalent years ago as they are today. Perhaps the condition was present, but referred to by different names, like senility. No matter how you describe it, most every family is touched by this disease and feels the effects, made more real perhaps by how long we live today versus 75 years ago.

Over the next several months I’ll be writing about our family’s experiences with what I call the dementia journey. Please understand that I’m writing as one who has experienced it as the primary caregiver for my wife–not as a medical expert. One may have different experiences of course, but what I write isn’t from a perspective of what’s right– just our journey and how I have handled it.

For a little perspective, Pam and I dated in high school and were married in 1968, 56 years ago. My first tour of duty for the Air Force was in Peshawar, Pakistan, as an enlisted airman, proficient in my second language, Morse Code. After 15 months in the Northwest Frontier of what was then called West Pakistan, Pam and I were married, and she accompanied me to my next assignment in Anchorage, Alaska, at Elmendorf Air Force Base. After 4 years of active duty, I was discharged, and we returned home to Pennsylvania with our one-year-old son.

We moved to North Carolina on Labor Day, 1984, and I immediately became active in politics, volunteering for the campaigns of Jesse Helms and Jim Martin. Shortly after that, I became a candidate myself for the North Carolina state senate. My opponent was attorney Bill Barker, and he was the victor. Shortly thereafter, I began my long stint with the North Carolina Fisheries Association, while Pam was a licensed insurance agent for the Tom Cox Nationwide Agency. She was with Tom for 20 years, most of that time as the Office Manager, meaning her mental acuity was sharp as a tack.

I offer this background material because I think it’s important to understand our journey, which is at the ten-year mark.

I’ll continue this blog post next year, so I’ll take this opportunity to offer you and yours a very Merry Christmas on behalf of Pam and myself.