Preliminary Ponderings
A Great Book!
I have been reading a book by David Brooks: “How to Know a Person”, that confirmed to me that I am on a good track blogging about Denny, our family and dementia. On pg. 166 of his book, Brooks quotes a man named Frederick Buechner from his book, “Telling Secrets:”
“It is important to tell at least from time to time the secret of who we truly and fully are . . . because otherwise we run the risk of losing track of who we truly and fully are and little by little come to accept instead the highly edited version which we put forth in hope that the world will find it more acceptable than the real thing. It is important to tell our secrets too because it makes it easier . . . for other people to tell us a secret or two of their own.”
Brooks lists some exercises in a process of excavation, going back into the past and reinventing the story of our lives. He listed among those exercises his favorite: “…just have serious conversations with friends. If you’ve lost someone dear to you, tell each other stories about that person. Reflect on the strange journey that is grief; tell new stories about what life will look like in the years ahead.”
Many of you have had such conversations with me. Thank you for letting me tell my stories in person and in this blog. I feel like I am slowly healing as I share and re-address what has taken place in the last handful of years. I hope this blog encourages you to share YOUR stories as well. We all need each other.
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Reminding us all why I’m writing this blog:
So, I’ll be up front with you. I am writing about the experience for several reasons:
1) I don’t want to forget what all has happened.
2) I want to find sweet things to remember amid the difficulties so that the memories aren’t so painful.
3) I want to warn others of what possibly to expect, should they be headed down a similar path.
4) I want others to know there are a lot of “us” out here who understand what you may be going through. You don’t have to go through it alone. Before I left Laramie so quickly in February 2023 due to Denny’s fall and subsequent transport to an assisted nursing facility in Colorado Springs, I had joined a dementia support group in Laramie. We met at a Perkins Restaurant once a week. The meeting was SO helpful, hearing from others in regard to what happened in their situations, seeing how they dealt with all kinds of problems, and benefiting from their wisdom and encouragement. I have missed those dear folks terribly. Are you in such a situation? Start your own Dementia Support Group if you can’t find one that is already meeting. You will thank yourself for that!!
5) Per David Brooks’ book excerpt I quoted at the beginning of this article, it is important to “tell new stories about what life will look like in the years ahead”. So that will be coming in another post down the road…
So let’s get started. How did we miss what seemed so obvious?
How did we not recognize that Denny was going into dementia? The answer has several facets:
1) Denny’s past
2) Our fathers’ dealings with dementia in comparison to Denny’s
3) Unusual symptoms that you do not normally hear about in conjunction with dementia
4) My kids and I were busy with life, while Denny was slowly sinking into a cloistered life, not noticed until we were too far down the road.
So, let’s begin talking about those points.
1. Denny’s Past
Though Denny died about a year ago–on April 30, 2023–my “kids” Byron, Emma, and Teresa and I think in retrospect that Denny had dementia for about 6-7 years. He had some odd behavior going on (I’ll go over that in a bit) and was making poor choices. But we still weren’t seeing “Dementia”, since his situation was so odd. We thought some of it might be that we were living back in the house where he grew up, and perhaps he was reverting back to his old shy self, hibernating in the basement—his old comfort zone.
So at one point, I talked Denny into moving his computer from the basement to the upstairs dining room. He had built a long “table” into the wall on one side of the dining room, where we could place foods for big dinners and have a nice assembly line. We repurposed it for Denny’s computer system…and books…and papers. Although it became a bit unsightly for company, at least we got him up into the sunny dining room where he would interact. That seemed to work well for a while. I am not sure how many years or months we sustained that set-up, but eventually he asked to move his equipment back downstairs, following physical operations that had him more bed-bound. He liked having that computer close by.
2. Our fathers’ past dealings with dementia in comparison
Whereas Denny’s dad’s dementia [see “Grandpa” story] started out with losing his words, forgetting where he was, who we were, how to do things like drive a car home from his weekly swimming time with his friend, Denny didn’t lose words. He was FULL of words! He also knew where he was and who we were. He didn’t drive, since he didn’t want to go out of our house much, but that was okay with me. Neither of us drove much. Our auto fuel bill was less than $20/month, since I walked to work and back for exercise. Only used the car to go to the grocery store, and not even that in the last year in Laramie, since I discovered I could walk to fill a short grocery list!
So Denny didn’t seem to have his dad’s type of dementia…nor my dad’s. [My dad was like Den’s dad, in that he lost words, and didn’t know how to care for himself. But we weren’t seeing anything like that with Denny for quite some time.]
3. Unusual symptoms not normally heard about in conjunction with dementia
Denny had a lot of “symptoms” – a lot of physical things going on – and was becoming depressed, I thought. I suggested we make an appointment with our Family Nurse Practitioner to look at all of the problems. Maybe it would be a simple fix? I wanted to encourage him that we could find out what’s wrong and get him feeling better. He finally agreed. Our FNP was great – very thorough – and as a plus had a great sense of humor. What was very interesting when we went to those appointments was that Denny seemed so morose and gloomy at home. As soon as he got into the FNP’s office, his personality changed, and he instantly became the happiest, healthiest guy on the block! Go figure. He would sit there with a huge smile, make silly jokes, and exude an attitude of “Nothing’s wrong with ME!” So I would have to bring up all his complaints to her, since he all the sudden thought he was in perfect health. EXCEPT he was sure he was in the last stages of COPD-Chronic Obstructive Pulmonary Disease. He had been diagnosed with COPD years previous. But his coloring was great – unlike my Dad, who had gotten to the last stages of COPD and his pallor could be bluish when he wasn’t getting enough oxygen.
Painful Urinating
So, during those meetings with our FNP, Denny kept excusing himself to go down the hall to the bathroom. The FNP said to me, “What’s with that?” I said, “This is what happens all day long. He is constantly walking from bed to bathroom, saying he is having trouble emptying his bladder and that it is painful.” So she put that on the list, to refer him to the urologist for testing. This was one of the FIRST physical symptoms that actually was unbelievably caused by dementia. When we did get him to the urologist, he ran Denny through many tests to see if all was well in that prostate. Everything emptied well. He did not find anything wrong. While Denny and I were meeting with him in the exam room following the tests, Denny kept getting up and excusing himself. The doctor said to me, “Where is he going?” I said, “He has to go to the bathroom down the hall.” The doctor just blurted out, “He has dementia!” I didn’t understand that, nor did our FNP, who read it in his reports that came back for her to review. She said, “How can a urologist diagnose dementia??!” So we discounted it and didn’t take it seriously! Ouch! But fast-forward to last year prior to his death: Denny’s new geriatric doctor in Laramie DID note that the urologist 2 years prior thought there was a psychiatric component to behaviors. Denny ended up at a UC Health urologist’s office for similar testing. The urologist’s nurse said, “Oh yes! The brain in dementia can indeed cease controlling urination.” So the last few months of his life, doctors mercifully kept him on a catheter, to his great joy. He finally did not have pain after how many years??? Oh, I hope this paragraph can help someone else down the road. Please take it seriously!!!
Parkinson’s??
Our FNP also watched Denny walk down the hall to the restroom during our appointments with her and said to me, “What’s with that walk?” His feet were turned out to the sides like a duck. He also had a hand tremor, so she decided to refer him to a neurologist to be tested for Parkinson’s. The neurologist said no to Parkinson’s. His hand tremor was side to side, where in Parkinson’s it’s up and down. And I believe in retrospect that his hand tremor was from too much coffee!!! He was a caffeine addict! Also, in regard to the walk, the neurologist said his walk was not similar to a Parkinson’s situation. And later on, I-me-myself-Claire, figured it out. Get this…
Denny’s Duck Waddle
A little history for you: I had started at some point wearing Birkenstock sandals over thick socks. They were super comfortable and easy on my bony skinny feet. So Denny thought those looked comfortable too. But where I liked the soft footbed–easier on my feet and kept the sandals on my feet better–he liked the slick foot bed, because he could get them on and off by just sliding his sock-clad foot in or kicking them off, not having to bend down as you would to unloose a shoe. He had bad back problems, so such a shoe worked great for him. But I learned something about the slick foot bed one day when my daughters and I went to a Blockbuster’s store and were coming out with a movie we had rented [yeah, that was a long time ago!]. I was happy and giddy and did a little jump, but when I did so, my foot went forward and kicked my sandal off and up and over the head of a guy walking in front of us! Haha! We laughed so hard about that. It was after that experience that I changed to the soft footbed so that my sandals would stay on. But Denny learned to just turn his feet out to the sides to keep the sandals from falling off. And he never explained it to anybody. If any of us would have asked why he walked that way, he would have told us, but we didn’t ask! Hahaha! That didn’t have to do with dementia–but it was funny, so I stuck it in here cuz it made me laugh. [Denny even showed up at daughter Teresa’s wedding in his Birkenstocks to walk her down the aisle! We were all horrified! I had left out his newly polished and buffed dress shoes for him to wear, but I had to go early with Teresa to prepare her at the church, so couldn’t oversee Denny getting ready. We have a video of him walking Teresa down the aisle…in those Birkenstocks! He was about a year into his dementia then, but we didn’t know it. The picture with this article is him gesturing at the church doors for Teresa to come in to walk the aisle with him. I will always love that picture of his sweet face and demeanor…and will continue to giggle as I remember his Birkenstocks.]
A Vision
In the spring of 2017, Denny was very sick. He had pneumonia. His skin was bluish purple. He was on drugs for the pneumonia, but still looked just awful. I was up one morning–always got up at 4:30 a.m.! I loved getting up early while it was still dark. I started that habit when my son Byron was old enough to take on a paper route. I would get up and help him wrap papers… and a few times I even DID his route and delivered his papers when he was sick. I LOVED the dark early mornings!!! No one usually was up with me, so I had time to have a quiet breakfast, coffee and bible study before starting the flurry of getting ready to go to work at the university. But this one morning, Denny comes up the stairs–still sick with his pneumonia. But he is super excited! He said, “God just met with me and told me my time is short. He told me to get my house in order.” He was SO ANIMATED! He was reading about heaven in the Bible and followed me around, reading bible excerpts describing God’s heaven–interspaced with terrible coughing. He started going through his piles of papers, throwing things out–setting aside stacks of books to give to the church library–busy, busy, busy. And so excited at the prospect of getting out of his sick body and into heaven. I didn’t know what to think. Maybe he DID meet with God! Who am I to say he didn’t?! But then over time, Denny started getting better, not sicker. He healed up. And didn’t head off to heaven, but subsequently became depressed. He stopped “getting his house in order”. And I believe, in retrospect, that is when the dementia began.
Continuing Next Week
This post was going to get way too long if I continued listing and describing all the “unusual symptoms”. I’ll pick the rest of those up for next week’s post. Thank you for joining me again next week, when we will continue toward Denny’s actual dementia diagnosis.