Creating a Caregiver’s Toolbox

Although Kate and I have experienced “ups and downs” while “Living with Alzheimer’s,” we’ve been able to live joyfully from the time of her diagnosis. There are many reasons for our success, but I believe having a large “caregiver’s toolbox” has been one of them.

We began our journey with 22 years of caregiving experience. That included all four of our parents and my dad’s significant other after my mom’s death. Three of them had dementia. We learned a lot during that time, and it made it easier for us to approach our personal experience with Alzheimer’s. That gave us the first tools for our toolbox.

My professional experience also provided relevant knowledge about caregiving. For ten years I was a social psychology professor. As I transitioned to a career in market research, I directed a master’s degree program for alcohol and drug abuse counselors. That fit well with my
social psychology background and greatly expanded my knowledge acquired in academia.

Several years later, I joined the Stephen Ministry program of our church. This program links individuals who are facing personal and/or family problems with church members who serve as understanding companions who meet with them regularly until the service is no longer needed.

Despite that background, I felt the need to know far more. Each of the people for whom we had caregiving responsibilities was unique.  I wanted to know how other people dealt with their situations.

My first step was to visit the Alzheimer’s Association website where I found an abundance of information and sources of help for caregivers as well as their loved ones. I read a fair amount of posts on various message boards but found it a little depressing. It was a comfortable place for people to express their problems and seek help, but I wanted to find a source with a more positive outlook.

That led me to check books on Amazon where I found Alzheimer’s Daughter by Jean Lee. Both of her parents had been diagnosed with Alzheimer’s on the same day. She carried a very heavy load as a caregiver. It was far more challenging than any of the experiences with our parents. Although facing significant struggles, she came away with an uplifting message for others facing similar situations.

I liked that. It led me to write her a letter. I was surprised and pleased when she replied. It turned out that she did much more for me than that.

When I created this blog, I communicated with her. It was she who introduced me to AlzAuthors, a not-for-profit organization of people who write about dementia. Becoming a member expanded my knowledge about dementia and caregiving. It also provided me with a much wider range of support. Most of them were caregivers or former caregivers. Others were people who were medical professionals who studied dementia. Still others had been diagnosed with the disease. As a result, I have been asked to serve on panels of workshops on various aspects of dementia and to be interviewed on several podcasts.

It wasn’t just the authors themselves, but many of them were also active on Twitter (now X). I, too, became active. That brought me in contact with a host of other people whose experiences have influenced me.

In addition to the impact that Alzheimer’s Daughter had on me, I was highly influenced by an article I read. It dealt with the importance of a team for a caregiver. The article’s focus was on a team of medical, legal, and financial professionals. I shared the author’s view and already had those in place, but I took that one step further.

I’ve always enjoyed being around other people. I decided to consider everyone with whom I came in contact to be a member, or potential member, of my team. That began with my family and friends but expanded to social media like Facebook and Twitter and the many strangers I encountered. This didn’t require anyone to do anything special. Even people who checked and bagged my groceries became part of my team. Servers in restaurants were especially important. As I look back, having a large team of supporters has played a big role in helping me as a caregiver.

Thus, I began life as a caregiver for Kate with a toolbox of useful tools. That toolbox has expanded considerably over the years. A carpenter always encounters situations that require new tools. That is certainly true for me as a caregiver, In future posts, I’ll talk about other tools that have been especially valuable to me. Stay tuned.

Remembering the Diagnosis: January 21, 2011

Today is the 13th anniversary of Kate’s diagnosis with Alzheimer’s. That was a life-changing event. At the time we recognized that, but now we know and understand it far better. We don’t celebrate the day itself. We celebrate the fact that she is still with me and that we have lived joyfully. I say that even though her Alzheimer’s, her 8-day stay in the hospital for Covid in November 2020, and her stroke almost two years ago have had a significant impact on our daily lives. Today, our world is much smaller than it was before.

Until the pandemic, we were very socially active. When Covid entered the scene, we were suddenly left to entertain and feed ourselves at home. In November 2020, we both had Covid. Kate spent eight days in the hospital. She has required total care since she returned home. That means we dress her, bathe her, get her in and out of bed with a lift, and use a wheelchair when we leave the apartment. Our social life is now limited primarily to our getting ice cream at a café downstairs each afternoon followed by dinner in the dining room at night.

So, how can I say that we live joyfully? I have two answers to that question. First, Kate  has not experienced most of the problems that other people face. Second, we have found ways to enjoy life and each other despite the changes demanded by Alzheimer’s. We have binged on things we enjoyed before the diagnosis. That included attending musical and theatrical events as much as possible and eating out for lunch and dinner every day for 8-9 years before the pandemic. As a result, we have never been socially isolated.

Because we get out as much as we can, we have a large network of supporters. That is especially true among the residents and staff of the retirement community in which we live, but it also comes through the readers of this blog and our contact through social media.

There is no way to predict how long the good times will last. As I have reported in other posts, we have experienced some new challenges recently. When we began this journey thirteen years ago, we decided to enjoy life and each other for as long as we could. That has served us well, and we will continue to do that and be grateful for the joyful moments we share daily.

Reflections on Love and Caring for Kate

I’ve been Kate’s caregiver for more than twelve years, and the more experience I get, the more strongly I believe that love has played a critical role in our relationship. Anyone can give attention to someone with dementia, but it is easier when you love someone. For that reason, I suspect that a spouse has a potential advantage over other caregivers.

Love can be a great motivator. As Bryan Adams’ song, “When You Love Someone” says,

When you love someone,

You’ll do anything.

You’ll do all the crazy things

That you can’t explain.

You’ll give up everything,

And you’ll never let them down.

You’ll be more compassionate

And more understanding.

And you’ll always be there

For the one you love.

The recipients of care also benefit from being loved. They are happier.

Ours has always been a loving relationship, but love has played a more significant part in our marriage since her diagnosis. In the beginning, it didn’t require much effort on my part. We had agreed in the first few weeks to devote ourselves to enjoying life and each other as long as possible. That was easy because we found pleasure in the same things – movies, theater, music, dining out, and travel. My responsibility was simply to arrange an active lifestyle that included all of these.

After her diagnosis, I felt an intense desire to be with her as much as possible. I immediately started having lunch with her every day. I was also transitioning into retirement, so I started taking the afternoon off. That enabled us to spend much more time together than we had had previously.

All of the activities and time together further strengthened our relationship. In some ways, it was like a long honeymoon. We were simply binging on things that had meant so much to us in the past, and we were doing it together.

Of course, Alzheimer’s has required significant changes in our lives. At first, Kate had several activities that she could do on her own. One of those was her computer. She worked many hours a day on that task. She worked mostly on a family photo album. She was never able to finish it because she lost her ability to use the computer. When she was no longer able to do that, I gave her an iPad which was her only self-initiated activity until the pandemic hit in 2020. Since then, I have had to assume greater responsibility for keeping her occupied.

Along the way, it became harder for her to remember my name or that I am her husband. Fortunately, she continued to recognize me as someone she knows, likes, and trusts. During this phase, I began to place greater emphasis on expressing my love for her. I did, and still do, that in several ways throughout the day.

I greet her enthusiastically when she wakes up in the morning. I tell her how glad I am to see her and remind her that we met in college and have been married for 60 very happy years. I talk about our children and grandchildren. I also mention how thankful I am that we both went to TCU. If we hadn’t, we would not have met.

I have a similar routine when I return home after lunch. As I open the door, I say something like, “Hello, I’m home. I’m looking for Kate. I wonder where she could be?” I continue talking as I walk to her, and I often see a smile on her face. Then I kneel beside her and tell her how much I like that smile and that I missed her.

Recently, I did something a little different. I whistled “I Love You a Bushel and a Peck” As I walked toward her, I could see the smile emerging on her face. That’s the way she expresses her love for me.

As I have noted in a previous post, our evenings are the most romantic part of our day. We are both more relaxed than at any other time. We appreciate our time alone.

Love can’t stop the progression of Kate’s Alzheimer’s, but I believe being loved, and receiving attention from our primary caregiver, as well as the staff and residents of our retirement community have played an important role in the happiness she enjoys while “Living with Alzheimer’s.” That makes me happy too.

Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.

More Happy Moments


Two months ago this week, I reported on the progress Kate has made over the past few months. I noted the improvement was not with her Alzheimer’s, but she has more cheerful moments and is talking more than she has since her stroke six months ago. Much of what she says is not intelligible; however, she responds in a way that conveys she knows what we say or ask. Overall, she seems to be more at ease.

Despite my encouraging report, I was guarded about the future. Would this continue? If not, how long would it last? I still don’t have answers to these questions, but she has continued to amaze the caregivers and me as well as the residents and staff we see on a daily basis.

Last week, her caregiver and I were stunned by a conversation she had with Alicia, a member of the food staff. She’s a young woman who took an interest in Kate more than six months ago. She is a person of great warmth who leans over and speaks to Kate in a gentle voice. Kate responded well to her in their first contacts together.

A week ago Saturday afternoon while we were having our ice cream, she stopped to say hello on her way to the dining room. Until then, Kate had been rather quiet. She wasn’t unhappy but not cheerful and not ready for conversation. When Alicia put her hand on Kate’s shoulder and spoke to her, Kate smiled and responded audibly. It was striking how quickly her mood changed. For the next 5-10 minutes they engaged in a conversation in which Kate was almost an equal partner.

Since she had to report to the dining room for the evening shift, Alicia couldn’t stay long. As it turned out, she was our server that evening. That provided additional opportunities for them to talk. I took several short videos of their conversation. Kate and I frequently have conversations like that. Sometimes our children have the same experience. A few weeks ago when my brother and his family paid us a visit, Kate responded similarly to my brother’s wife. There are also periodic occasions when she makes a brief response to a staff member or resident; however, this was the first time I had seen Kate engage in a conversation with someone outside our family. She was perfectly at ease.

It was only three or four years ago that I learned about the distinction between rational and intuitive thought/abilities and their significance with respect to dementia. My thanks to Judy Cornish (The Dementia Handbook and Dementia with Dignity) for introducing me to this distinction. The experience with Kate and Alicia was a dramatic example of how well Kate’s intuitive ability works even though her rational abilities are virtually gone.

It also reinforces my belief that the improvement she has experienced in recent months relates to her intuitive abilities. Kate may not know what day or year it is, people’s names, or where she is, but her ability to sense the world around her enables her to experience pleasure.

Our daily routine has opened the door to other people who relate to her as a person, not a person with dementia. She has the same experience at home with the caregiver and me. Together, these things must be making a difference how she feels and responds, but how long will it last? I don’t know. Stay tuned. I’ll let you know. In the meantime, I’ll continue to take pleasure in each moment we have together.

Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.

An Anniversary I Won’t Forget

Ten years ago today, Kate was diagnosed with Alzheimer’s. That led to the most significant life change we’ve ever experienced. That night I made the first entry in the journal that became this blog . I have posted it below with a few of my present thoughts about “Living with Alzheimer’s.”

JANUARY 21, 2011 BY RICHARD CREIGHTON

Getting the Diagnosis

Today Kate and I met with Dr. Reasoner to get the results of Kate’s PET scan. She had gone in for the scan a couple of weeks earlier following a routine appointment with Dr. Reasoner. I went with her for that appointment to give my own impression of Kate’s lapses of memory and to hear what Dr. Reasoner had to say.

Dr. Reasoner suggested that she have a PET scan and a behavioral evaluation by a neurological psychologist. Kate had the scan about 2 weeks ago. On Wednesday of this week, January 19, she had an initial visit with the psychologist. Kate is scheduled to have her evaluation on Wednesday, February 16, at 12:30. She has been told this will take as long as 5-6 hours.

Kate and I have not talked much about the PET scan and the potential results. We both knew what was possible, and I think neither of us wanted to drag ourselves down in worry of the worst news. For the past few days I have had some trouble sleeping and have found myself thinking about how she and I would react if the test came back positive. I am sure that every cancer patient would understand this reaction.

As we went to the appointment, I kept telling myself that we might get good news that the test was negative. That was not the case. Dr. Reasoner presented the results matter-of-factly but not coldly. She said the test did show signs of “early onset Alzheimer’s.” She went on to explain what that meant (the tangles in the brain) and how it can be addressed (initially with Aricept and after a few weeks another drug that has, in the past, been used at later stages of the disease).

Dr. Reasoner told her the average life expectancy for someone who is diagnosed early (the starting part was not and, I suspect, cannot be known) is about 12 years but that she could live much longer. She also gave a few examples of people she had known whose quality of life was good even with the memory loss. She is especially interested in Kate’s behavioral evaluation. That evaluation will determine whether the disease has affected other things than simple memory.

Kate handled the news with a good bit of control and later in our meeting, she said that in some ways, she actually felt relieved to know what was causing her memory problems. Her greatest concern is having to depend on family or professional help to take care of her personal care, something that she feels could be required for a long time should she live as long as her parents.

I tried not to give in to the emotion I felt on receiving the news. At one point as we were discussing Kate’s care in the future, I reached for her hand and tried to assure her but choked up. Dr. Reasoner gave me Kleenex to wipe my eyes.

After leaving Dr. Reasoner’s office, we went to Casa Bella, a restaurant that holds a special place in our hearts. We were introduced to it in the early 70s by one of Kate’s best friends. In the last 10-15 years, however, we have eaten there more frequently. We came there after both of our dogs died. She got her veal piccata and amaretto cheesecake that she loves so much.

We talked briefly about having to decide when to tell our children and friends. We both agreed that now is not the time. We know that once other people know they can’t help but treat you differently, and she doesn’t want that. We are just going to take it a day at a time right now and trust that we will know when we should let it be known. This is going to be very hard for both of us as there are people we might look to for support, but there will be a time for that down the road, hopefully a long time down the road.

At that time, I had no idea of what the future held. We were just determined to make the most of whatever time remained to us. I’m grateful that we’ve been able to do just that. We’ve not only enjoyed life but each other as well. Kate can only live moment-to-moment now, and I mean that literally, but I continue to focus on that initial goal. It has served us well in the past, and I am optimistic that it will do so in the future.

I am mindful that we haven’t done it alone. I’m grateful to a host of people who have lightened our load in numerous ways. They include our healthcare professionals, especially her doctors and their associates, but they extend far beyond them. I’m thinking of family, friends and even strangers who have boosted our spirits so many times in so many ways. I am thankful to those of you who are readers of this blog. You, along with my Twitter friends and fellow AlzAuthors, have given me a focus beyond that of being a caregiver. You have played a key role in keeping me going. I consider all of you as members of my “Caregiver Support Team,” and I thank you.

I also recognize there are many others “Living with Alzheimer’s” who haven’t been as fortunate as we have. Some of you reading this post may be among them. My heart goes out to you. My wish is that you will find your own ways to experience moments of peace and joy in the midst of the inevitable challenges that face all of us who travel this road.

So, How Are Things Going?

It’s very hard for someone who doesn’t live with a person with dementia to grasp how far one has traveled on this journey. I know that was true for me. I am sure my dad noticed signs of my mom’s dementia years before I was aware.

I believe the typical image of a person with Alzheimer’s is heavily influenced by our perceptions of the last stage of the disease. Before that, many people don’t recognize the dementia at all or fail to understand how far the disease has progressed. Kate was diagnosed almost ten years ago, but it is only in the past 2-3 years that it has been more obvious to those who spend little time with her.

That is what prompts me to write this particular post. We have crossed another milestone on Kate’s journey. It is easier now for people to tell that she has Alzheimer’s. That is true even for people who are with her a short time. Having said that, I don’t believe many people would recognize just how far along she is. I see it because I am with her so much. That gives me many opportunities to observe how she functions. Overall, her changes have been very gradual, but they have been much more evident even in the past month or two. It even seems like she has changed a lot in the past two weeks. Let me summarize a few of the things that make me say this.

First, and foremost, she has reached the point at which her rational thought/abilities have almost completely vanished. By that I mean her memory for names, places, events, and processes (how to do things) is at a disturbing low point.

Simultaneously, her intuitive thought/abilities are on high alert. Her experience of joy, sadness, fear, and anxiety are more evident. The fear and anxiety are troublesome to me as well as to her. On the other hand, all the positive emotions related to her to her senses bring intense moments of pleasure as well. Sometimes we experience a mixture of both good and bad.

Two days ago, I helped her up after she had rested. She was confused and uneasy. She knows something is seriously wrong with her, and it was evident. I looked in her eyes and said, “I love you, and I want you to know that I will always be here to help you.” She cried, and we embraced. It wasn’t that the underlying problem was solved, but she was comforted. It was touching moment for us, and we were able to move on.

For a long time, she has been insecure, but that has increased considerably. She has always wanted to do the “right thing.” Now that her memory is gone she doesn’t even know the right thing. When I give her choices like “Would you like to get up now or rest a while longer?” Her typical answer is “I don’t know.” It is evident in the morning when needs instructions on everything she is to do in the bathroom.

She often doesn’t recognize her napkin and wants to know what to do with it. When I tell her she can’t understand what I have said. When we eat out, I generally put the napkin in her lap. Invariably, she removes it. She often wants to use it as a placemat. When that happens, I simply ask the server for another napkin. She never remembers what she is drinking or if the glass is hers.

The most obvious sign of her insecurity is her hesitation when walking or sitting down. She walks as though she is blind, very short shuffle steps without lifting her feet very much. Any change in elevation is a problem. Naturally, that involves stairs, but it also includes small variations like flagstone walkways, or any surface with color variations that she perceives as differences in elevation.

I have long heard that putting a black carpet or doormat in front of a door can prevent wandering outside. It is only recently that I have observed this phenomenon with Kate. She is very cautious about stepping where there are contrasting dark and light surfaces. We have a dark blue rug with a white border in our bedroom. She is now very cautious when we enter the bedroom. She is careful to step over the border.

It is often very difficult to get her to see things I want her to notice. That comes up most frequently when we are eating. I always cut her food for her and usually put a bite on her fork and place it right in front of her on her plate. When I try to tell her where her fork is located, I almost always fail. Even when I pick it up and attempt to put it in her hand, she has a hard time understanding what I want her to do.

At lunch the other day, I noticed that she hadn’t eaten any of her rice, something that she usually likes. I mentioned it to her. She couldn’t see it, and none of my explanations helped. I finally picked up her hand and let her feel it.

It is very difficult to predict what she will be like at any moment. Quite a few times, I have mentioned this in connection with her sleep. Sometimes she sleeps or rests in bed far beyond her wake-up time. Sometimes she gets up very early. In itself, I don’t think of that as a problem except for me to adjust my daily routine. The relevance is that it is another sign of change in her condition.

Along with that, she experiences far more delusions than ever before. Sometimes I feel as though her day is one of delusions, and they are positive and negative. We can have great conversations when she is in a cheerful mood although I often don’t understand much or any of what she says.

Unfortunately, she has more negative delusions now. They usually involve things that seem minor to me but very important for her. The most typical is believing there are people in our home, and we are preparing to go out, or do something, with them. She is very concerned and often relieved when I tell her “it’s just the two of us” except when she doesn’t accept that or forgets moments after I tell her.

Another significant change is in our relationship. She is more likely to experience moments when she doesn’t recognize me at all. In some of those moments, she doesn’t immediately feel comfortable with me although she becomes more at ease in a very short time. There are times when she is experiencing anxiety and wants me but doesn’t recognize me. She will say, “Where is Richard?” or call to me by name as though I am in another room. Another interesting thing is that she sometimes refers to herself as “she” and to me as “he.” This can be confusing. At first, I was quick to ask who she was talking about. She can’t answer that, but I’ve learned through experience that “she” and “he” are “we.”

All of this is to say that our world has changed substantially. “Living with Alzheimer’s” is definitely more challenging these days. I am grateful for the good run we have had and that we continue to share so many “Happy Moments.”

Reflections on Reaching 80

Today is my 80th birthday. I used to think that was old. Many people still do. That’s what I thought when Kate’s father celebrated this milestone. That perception continued when our other parents reached the same age and a decade later when Kate’s mother and my dad made it to 90. I joked with Dad that we would celebrate his 100th, but I don’t think I took it seriously until his annual birthday parties in his mid-nineties. He lived with great anticipation as he reached his 3-digit birthday, and died two weeks later.

I don’t mean to suggest that he was like a spring chicken during that last decade, but he remained quite active until experiencing a stroke when he was 96. He had a variety of physical issues to deal with, but mentally he was quite youthful until his death. In many ways, I am like my dad. I realize that is no guarantee that I will live as long as he did, but it does make me think that I might have a shot at it.

I’ve thought a lot about Dad since he died 6 ½ years ago. Not surprisingly, much of that involves his care for my mom who had dementia. Early in the year he turned 80, he brought up the topic of moving from South Florida. He and Mom were not specific about their motivations for moving. They moved there from Tampa in 1936 and had always loved it. As I recall, he (or they) said something about the way life was changing, and they thought it would be nicer to be near their two sons.

It wasn’t until sometime after Kate was diagnosed that I began to wonder when Dad noticed the first signs of Mom’s dementia. Could that have been the primary motivation for moving? That could easily have been the case. It was four years later when the social worker at the office of Mom’s primary care physician informed us of her dementia. By that time, we were sure she had dementia though we hadn’t put a name to it. We were like many people who considered it to be a normal function of aging. Of course, Dad was also having health issues. Perhaps, that was their motivation for leaving Florida.

As it relates to my birthday today, I would say this is a time of life when a variety of things that remind you we don’t live forever. If my memory is correct, it was between 75 and 85 that each of our parents began to have health issues.

I am 80, but I am still in good health. I do have a little arthritis in my fingers, and I have periodic lower back pain. Neither of these has been serious enough for me to take any medication. I am mindful that could change at any time. It was that kind of thinking that led to my making a down payment on an apartment in a local continuing care retirement community a little over a year ago. At the time, a move seemed a long way off. Now, it is only 6-8 months before the building is completed.

The important issue for me is the same as it has been for the past nine years. That is taking care of Kate. She requires much more attention now. That won’t get any better. That means I need to remain healthy. I take comfort in the fact that my dad was in his mid-80s when Mom was diagnosed, 89 when she died. I was 70 when Kate was diagnosed. It’s been over 9 years, and I’m just 80. I’m going to be optimistic that I will be able to continue caring for her in the future, with a little help, of course.

A final thought with respect to my dad and to Kate. Dad led a more challenging life than I have, but he was always an optimist and seemed up to almost every curve ball thrown at him. On occasions like milestone birthdays, he always said, “I’ve had a wonderful life.” I share his thinking.

Kate was up early again this morning. When she was almost finished with her breakfast, I opened a couple of birthday cards and read them to her. She suddenly realized that she hadn’t known it was my birthday and wanted to know what she should do. I said, “You could just say, ‘Happy Birthday, Richard.’” She started to sing “Happy Birthday” but was unsure of the words, so I coached her a bit. When she got to the part where she needed to sing my name, she couldn’t remember it. I filled it in for her, and she repeated it and finished the song. I told her that was a present that made my day, and it did. Like my dad, I, too, have had a wonderful life.