Tag Archives: Jerry Schill

POPEYE MOMENT 

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Author: Jerry Schill

Surely everyone has heard of Popeye the Sailor Man cartoon. If not, there’s nothing I can do to help you. I’ll just say that if you know a lot about Taylor Swift and little or nothing about Popeye your life is lacking! When Brutus gave so much grief to Popeye for one reason or other, Popeye would exclaim, “That’s all I can stands and I can’t stands no more!”  That’s when he popped open a can of spinach and proceeded to physically put a hurt on Brutus. It was great!

We all have our “Popeye moments”. Being involved with fisheries politics for 38 years, I became very good buds with Popeye! Combine that with caregiving and you can imagine the decibel level at our house at times.

I do not like to sleep past 5:00am. Every so often I may go till 6:00, but then I consider it a wasted day. Why, you ask? In my mind I still must slop the hogs and milk the cows. I think the time of day right before the sun comes up is the best. Simon & Garfunkel claims that the “darkest hour is just before dawn” so you can read into that whatever you want.

A few weeks ago, I got up earlier than normal, at 3:00am. At 4:00, I began typing an email to some House members about a bill that was introduced by Republicans that we did not like. First, it was a poorly written bill about flounder and incorrectly listed the species as summer rather than southern flounder and addressed red snapper which is regulated by the feds, not the state. More importantly, the measure would have helped the recreational fishery (which is a good thing), but did nothing and could even harm commercial fishermen. The more I typed my email the more agitated, (angry), I became. That’s because we had been addressing our concerns but no legislator was listening. Before I sent the email Pam got awake so for the next couple of hours I tended to her needs, getting dressed, getting breakfast and taking meds. I found myself taking out my frustrations with the politicians on my wife by being impatient and using a non-loving tone when speaking to her. Afterwards, I realized that I was taking out my aggravation on my wife! That’s when I decided to make a change. I called Glenn Skinner, Executive Director of the North Carolina Fisheries Association, and told him I was submitting my resignation to NCFA and resigning as a registered lobbyist.

There is much more to this story but the point is that I had my “Popeye moment.” It was the good Lord’s way of saying, “Enough! Take care of your wife”!

Dementia/Alzheimer’s is a life changer. It is not the end of the world but while everyone knows it changes your life, those of us who are living it sometimes forget that it’s not just our loved ones that change. We need to rid ourselves of the stubborn notion that things are ok. In my case, I kept working my job like it was ok. It wasn’t. We like it when we’re on cruise control with our life and all is well. It’s ok to acknowledge the changes.

Next time we’ll talk about the need for both Pam and I to continue to live, and love life! Differently perhaps, but LIVE!

CAREGIVING AND EVERYONE’S FAVORITE SUBJECT: INCONTINENCE

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Author:  Jerry Schill

This is the fifth article I have written about our ten-year journey with dementia/Alzheimer’s. If you have missed the others, I suggest you look for them beginning with December as it makes more sense to read the history in a somewhat chronological fashion.

Last month I covered the shopping experience and the difficulty in dealing with dementia while remaining “jolly” in the Christmas season.

This month’s article involves that of care-giving. I am Pam’s primary caregiver, but at times I rely on family, friends, or paid caregivers when I need to shop, work or just need a break. It’s made a little more challenging in my case as I’m still working, which requires trips to Raleigh when the General Assembly is in session and also meetings at various locations. In the past, Pam could accompany me as I attended those meetings but it’s almost impossible to do so now.

It has been about 6 years since we have depended upon a paid caregiver. She is not a health professional but is a person who genuinely wants to help. She typically is here 18 to 20 hours per week. When she has medical issues, I have a challenge scheduling someone else. A few years ago, when my job required my presence in Raleigh Tuesday through Thursday, the caregiver stayed overnight for 2 nights. That was a difficult period for all of us. Two years ago, I hired a caregiver in the Raleigh area to stay with Pam during the day. I had our camper near Raleigh so the caregiver would come at 7:00am and stayed with Pam in the camper till I returned about 3:00 or so. That worked out very well, but we only did that for a year.

When medical issues come up with the caregiver, it can be quite a challenge to find someone to fill because others have prior commitments. Of course, there are many companies that specialize in this area but are more costly. There is also the issue of them being unfamiliar to Pam.

So that brings up family and friends as caregivers. How do I discuss the subject of incontinence with dignity? And how does it relate to the topic of caregivers?

Let me start with our children helping out staying with their Mom while I do “whatever.” If it was just about “babysitting” or just making sure she doesn’t grab the car keys and take off or wander off somewhere or helping with a meal, well that’s easy. But when it starts with their Mom not remembering their name or even who they are, that can be traumatic for adult children.

There comes a point in this journey when one realizes that it just makes life easier to wear “Depends” 24/7. Until you get to that point life can be a crap shoot. (Pun intended). But even then, that’s a lot to expect from your young’uns to change their Mom’s diaper! We have 4 children, and they all help as much as they can. They all have families and jobs but try to be here every weekend on a rotating basis.

It is also a lot to ask of friends and neighbors, so at this stage I try to limit those requests for relative short segments.  It changes the whole dynamic of who you call to help out.

The incontinence issue is twofold: First, some folks are pansies and can’t deal with getting their hands dirty. Quite frankly, growing up on a farm, this is hard for me to understand. Second, and probably more important, is the dignity aspect of cleaning up. It’s a very humbling experience for the caregiver and the loved one. I think it’s even harder for my wife because she knows having someone else helping you in the bathroom isn’t the way it’s supposed to be. She frequently tells me that she loves me when I’m helping, because “she knows.” I hate it when she’s not happy. I can take her occasional anger and name-calling, but the crying and the sadness is tough.

Bottom line for me is this: Pam is my wife, and I am her primary caregiver. It is my responsibility, indeed my privilege to do so. If at all possible, I want to make sure her needs are met. I am rather good at doing it, but pray that I can do so with more patience at times.

And finally, the cost. I’m still working, so the costs associated with caregiving are higher because of it. Generally speaking, half of my pay goes toward the costs of caregiving. If it wasn’t for our kids and volunteers to help out, having a job wouldn’t make sense from a financial standpoint.

Till next month…

TRY SAYING “HO-HO-HO” WHILE GRITTING YOUR TEETH 

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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.

CONSISTENCY! OR THE LACK THEREOF!

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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.

The Ongoing Story Of Dementia/Alzheimer’s

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Author: Jerry Schill

TREASURE THE MEMORIES 

Last month’s article was simply a short background to give the reader some perspective on our 10-year journey with dementia/Alzheimer’s, so this month I will begin with where it all started. 

It was in the summer of 2014 when our two daughters asked if I noticed anything about my wife’s memory. I replied that I did, although it was nothing to be overly concerned about at the time. For example, when I opened the refrigerator, I would find the ketchup and mustard in places where we typically did not put them. It wasn’t a question of right or wrong, just different, as in unusual. Without me present, the girls talked to their Mom about what they noticed about her memory. When I came into the house after about an hour all was good, but after the girls left the tears started. Pam was very upset that they mentioned to her about her memory. When she asked me if I noticed anything, I lied and said no. I’m not sure that was the right thing to do, but it seemed so at the time. That began a downward trend. At the time we were living in the country about 12 miles from New Bern.  

Two years later, 2016, we moved within the city limits of New Bern and shortly after made an appointment with a neurologist. After the normal oral exam to evaluate short term memory, there was a brain scan. The neurologist went over the results with Pam and me, including the brain scan, and explained about the abnormalities in the scan. She said the diagnosis was MCI or Mild Cognitive Impairment and stressed that it is not dementia, although that was a possibility in the future. Pam cried, and it was a rough few days after that appointment.  

I arranged for a family meeting with the neurologist. Our two oldest, Andy & Amy, attended as Sarah & Adam were unable to be there. The neurologist repeated the same explanation with Andy and Amy. Andy aske the question, “what do you suggest we do from here”? She answered bluntly, “treasure the memories.” 

While those words seemed cold at the time, it gave us the stark realization that things were going to be very different. 

To Be Continued Next Year…

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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.