Alzheimer's – My Perspective: A Continuing Conversation
This is a continuing conversation that Dorene and I have agreed to share with our church family. If you have not read the first installment, click here to read Dorene’s blog of 9/25/25, “How Are You?...I don’t Know…But…,”. It is her thoughts as she progresses through this disease. You will also meet the new guests at our house, “Alzyee and Arthur.”
Today’s post, regarding our Alzheimer’s continuing conversation, is my perspective as the caregiver.
One bit of clarification, we have been told by neurologists that when most people say they have dementia, they most likely have Alzheimer’s, which is a specific type of dementia.
From the book The 36-Hour Day, “Alzheimer's disease is the most frequent cause of irreversible dementia in adults. The intellectual impairment progresses gradually from mild forgetfulness to total disability…. At present, physicians know of no way to stop or cure it.”
Coming Out
This section's title may have a different connotation for you at first glance than it did for us several months ago. It was Sunday, May 18, 2025, that Dorene and I addressed the church with our devastating news: Dorene has Alzheimer’s Disease, and additionally, I was dealing with bladder cancer and severe arthritis that limits my mobility.
This continuing discussion is about Dorene’s Alzheimer’s Disease. Since Alzheimer’s generally advances in the later years of one's life, it is not uncommon for the caregiver to also have infirmities that affect his or her caregiving.
Although that is an important factor in the conversation of Alzheimer’s, I will not include that part of the discussion at this time.
Early Stage
Dorene is now in the early stage of Alzheimer’s Disease. What does this mean? First off, of course, her memory is fading. This is an “up one day and down the next” occurrence. Sometimes I am surprised at what she does remember, and other days she falters quite often. We have had the typical response from good-meaning friends, “Are you sure it is Alzheimer’s? Could it just be the typical memory loss that we all experience as we get older?” Yes, we are sure. Even before the cognitive test by two different neurologists confirmed it, I was suspicious. I could see it in her eyes. She asked me what I meant by this one day, and I said, “At times, there is just a blank stare in your eyes.”
This disease has drastically altered our lives. Dorene no longer drives from our house in Sunriver to Bend. She does drive locally into Sunriver. This means that every doctor's appointment, physical therapy appointment, every trip to the grocery store, a friend's house, a church function, to Costco, clothes shopping, shoe repair, donut shop, and KFC, I have to drive. This leaves me with little time to do the things I want and need to do.
Thankfully, Dorene is still capable of doing the shopping. Normally, by the time we drive to Freddie's for grocery shopping, my arthritis has kicked in, and I sit in the car while Dorene shops. Upon occasion, when I go in with her, we ‘fight’ over who is going to push the shopping cart. Soon, you may see each of us pushing our separate shopping carts; we need the support.
From my experience, Alzheimer's patients may lose their reasoning ability. Generally, everyday conversations are more difficult. I find that I need to relay more info so Dorene can grasp what we are talking about. I could inject here, “What reasoning ability could she have lost, since there never has…?” but I don’t want to push my luck too far.
If you become the caregiver of someone with Alzheimer’s, I hope you really enjoy being with that person. You are now together almost 24/7. Fortunately, I have always enjoyed being with Dorene. I am not sure how she may answer that question; she might even lie if you ask her and say she enjoys my company, but not to worry; she is now dependent on me and has no choice.
We strive to maintain our lives as normally as possible, doing the same things we have always done. Recently, we realized that we have been spending too much time alone at home, so we take a drive somewhere every other week. First to see the Kokanee Salmon spawn between Wickiup and Crane Prairie. The next trip was to Beckie’s Café (beyond Diamond Lake) for lunch, and finally a trip to Sahalie and Koosah waterfalls, and lunch at McKenzie Bridge. The coming winter may put a kibosh on those plans, but we will do what we can.
If you are the caregiver of someone with dementia, I hope that you have developed patience. Unfortunately for me, the only relationship that I have ever had with ‘Patience’ was that it was the name of my first girlfriend ;-). As the caregiver, you will need to gently remind your spouse to take care of something or ask the question, “Did you remember to do…?” This has not been an easy transition. As Dorene continues to struggle with her loss of memory, I find that as she speaks, she will have lost her train of thought or the word she is looking for. She will look to me and say, “What am I trying to say?” Many times, she will start a conversation in the middle of her thought, and I am not sure where she is going or even what train she is on.
We try to maintain humor in our lives. We think that is very important. If you know us, you know that humor has been a huge part of our lives. The next time she asks me, “What am I trying to say?” I think I will answer, “I know I am good, but I can’t read your mind.” I could probably get away with that. Upon occasion, I might threaten her with being replaced by my “girlfriend” or “The Ex”. Her response, “Do you have her phone number? I will dial it for you.” And next is the real stinger, Dorene says, “Go ahead, you know you have the best you will ever have.” Hard to fight that one. I look around and see that some of you have married up. Not only does this apply in the Foster Home, but the climb “up” for me was to the top of Mt. Everest.
When Dorene’s memory first began to fade, I was concerned about how she would be received talking in public with her memory lapses. I quickly recognized that she needed to be treated as if she did not have this disease and that most people would accept what was happening. This, of course, is not the case with some that we encounter. It is notably difficult for her to talk with someone, other than friends, on the phone. She quite often gets a harsh response to her questions, “Ma'am, I just told you that!”
One of the other changes that I have recently recognized is that Dorene needs more physical closeness, more loving comments, more touching, hand-holding, and just a general assurance that I am still here for her. There appears to be a sense of insecurity as to what the future will hold. That is understandable. It has always been a good morning kiss and a good night kiss between us, unless I am in the dog house, but now it is more. So, if you see us necking in the back row of the church, remember it is just therapeutic for Dorene.
We can no longer do the things that we used to. I am sure that is true for all who enter the octogenarian age. For the first time in almost 15 years, we will not have a large BBQ in our backyard. I think many might think this was because we put our house up for sale, but in reality, we are no longer able to do that. Dorene continues making her pine needle baskets, and I continue with my woodworking and maintaining the yard.
At this point, we are still making our appearance at church and enjoying the 9:00 Sunday School hour. I do not plan on teaching any more; the effort to put something together for me is exhausting. We have handed off “Tidbits and Treasures,” our weekly email to some 130 different people. David Tranby has agreed to take this on. We kept T&T going as long as we could, sending it out weekly under Dorene’s name. If truth be known, Dorene has been unable to participate in this for months.
The Future
What does the future hold? We are not sure. But we know it will have its challenges. Last February 14, Valentine's Day, we went to dinner as usual. Dorene looked at me and said, “When do you think you will have to put me in a care facility?” Before I could answer, she said, “Probably if I become violent.” A very romantic conversation to have on Valentine's Day. I repeated that conversation to a friend, who was visiting us, two weeks later, and Dorene did not even remember saying it. Our Fortieth Wedding Anniversary was in August this year. Dorene repeated the anxious question, “When….” I could only say we don’t need to discuss that at this point. Hopefully, it will not happen.
Recently, Claudia Hulbert sent me a copy of “If I Get Dementia” (I’d like my family to hang this wish list up on the wall where I live. I want them to remember these things.) Over twenty items to help respond to a Dementia sufferer. I thanked Claudia for this and said that I was stuck on #16, “If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.” I have taken so many deep breaths that I am hyperventilating. Claudia relayed to Al about #16. When he called several days later, Al said, “I hear you are doing well with the list except for #16.” I said, “No! I am stuck at #16 and can’t even get to the rest of the list.
Dorene is on a nutritional program designed by a neurologist who says it may prevent and or reverse Alzheimer's. We don’t know if this is working or not, but at least for the moment, her Alzheimer’s is progressing at a slow rate.
We have taken our house off the real estate market for the present. It is just not a good time to sell. We will market the house again in the spring, and when we sell, we will move into Bend.
We trust in the Lord that we will get through this. I would like to add to that “with success”, but I am not sure what success would look like in this case.
For those who are dealing with this horrible disease and have questions, we are available to share what each one of us is going through and how we are dealing with it.
Resources
The 36-Hour Day – A family guide to caring for people who have Alzheimer's Disease. Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH. This is not an easy read. It reveals what is in store for the caregiver.
The End of Alzheimer’s – Dale E. Bredesen, MD. A nutritional guide to prevent and reverse Cognitive Decline.
Caregiver Help – We have also heard that there is a support group for the caregiver of an Alzheimer's patient at Touchmark Mt. Village on the west side of Bend. I have yet to attend because of the drive.
“If I Get Dementia” – A list of Do’s for those caring for a Dementia patient. This was given to me by Claudia Hulbert. I would be happy to send you a copy upon request.