We Kissed: What Does it Mean to Be Married to Someone with Dementia

By Elton Nelson

What do you do if the person you love and have loved for decades becomes terminally ill? She will gradually lose her ability to do things she has always done well. Her speaking ability will decline until she can no longer utter a sound. She will increasingly become more childlike until she is entirely dependent on you. It will seem like she is no longer the person you once knew intimately well. Yet, it is still her. Finally, she will die. You are still alive. Now you face a new life without her.

What will that do to you, your emotions, how you live and view life? What happens to your thoughts about death and life after death? If you are a person of faith, how does this affect your understanding of and relationship with Him?

Is there meaning or purpose in your and her situation? How do you relate to her as she is less responsive to you? What is it to love her? To summarize, "What does it mean to be married to someone with dementia?"

Elton Nelson personally grapples with all these questions and more in this book. He was married to his wife, Jan, for forty years. During the last ten years, the symptoms of dementia continually increased, affecting every aspect of her being. He shares many stories of their life and describes this decade as the most challenging of his life and the most precious. He would not wish what happened to Jan and him on anyone, yet he is thankful for this decade.

His wife was diagnosed with dementia, a brain injuring debilitating disease where death is the only cure.

• Language: English
• Publisher: Newman Springs Publishing, Inc.
• Release date: Feb 24, 2022
• ISBN: 9781638816201

Book preview

Copyright © 2022 Elton Nelson

All rights reserved

First Edition

NEWMAN SPRINGS PUBLISHING

320 Broad Street

Red Bank, NJ 07701

First originally published by Newman Springs Publishing 2022

ISBN 978-1-63881-618-8 (Paperback)

ISBN 978-1-63881-619-5 (Hardcover)

ISBN 978-1-63881-620-1 (Digital)

Printed in the United States of America

Contents

Preface

Life Is Changing

Becoming Childlike

Diagnosis

Resolutions

The Greatest Resolve

Loss and Grief Before Death

The Grief Process

Personal Emotional Support

A Spiritual Journey

Perspective on Injustice

Doubt

Caregiving: What It Is and Does for the Caregiver

The Nitty-Gritty of Caregiving

Getting Caregiver Help

Respite

Our Relationship

Temptation to Infidelity

Connection

The Lord’s Supper

Intimacy

Jan’s Death

Funeral

A New Normal

Perspective on Death

Remarriage

Grace Guilt

Preface

In the early spring of 1975, I was part of a singles Christian group at Monte Vista Chapel Church in Turlock, California. A young lady, Jan Larson, was living in Turlock and attending Monte Vista Chapel. I was living in Patterson, attending Patterson Covenant Church. She was a group leader; I showed up when there wasn’t anything more exciting to do. She mailed out a flyer saying there would be a coffee hour on a particular Saturday night, at another group member’s apartment. That sounded like an exciting way to spend a Saturday night. So I went over to the apartment. It turned out that Jan had put the wrong date on the flyer. Most of the others in the singles group went to the Monte Vista Church and got the word of the wrong date. But I didn’t.

The following flyer she sent out announcing an event had the correct date on it, and I went. She had heard about my going the last time. When she saw me, she came to me, noted her mistake, and thoroughly apologized. Of course, being a gentleman, I graciously accepted her apology. We had some pleasant conversation for a time after that. I then invited her to a game of bumper pool. Another guy coached her, and she won.

Pondering this set of events, I realized that this was an attractive young lady, pleasant to be with, and someone who will admit a mistake and apologize. I decided to check her out. I consulted an ancient form of literature known as a telephone book. I found that in Turlock, there was a whole page of Larsons and looked for her name in vain. But the Lord preserved for me that last flyer from Jan (well, actually, I just hadn’t bothered to throw it away), and it had her phone number on it. I used the telephone (an ancient form of long-distance communication used before the cell phone invention) to ask her for a date. She must have had a case of temporary insanity because she said yes.

When I beheld her on that first date, she was definitely pleasing to my eyes, and she soon became a treasure to my heart. That date went well, but sometime later, she said she saw a banana peel in my car that night and didn’t find it at all appealing. I acknowledged that I had slipped there, and our relationship continued (that’s enough puns, at least for now).

After about a year and a half of dating, we were married. We had a good marriage and raised three children, a boy and two girls. About thirty years into our marriage, I began seeing changes in Jan. Increasingly she was not acting the way I had always known her. I later came to learn that she had acquired dementia. I did not recognize what was happening for about four years, even though my mother had dementia for several years before she died. Jan’s disease profoundly changed how I could relate to her. It changed me and altered my entire life.

I often shared my experiences in caring for Jan, on Facebook. I received responses suggesting that I could, and even should, write a book on what I found to be happening. In my relationship with Jan, I was confronted with the reality of her impending death. I knew I would want to address the entire process leading up to her death and its effect on me afterward. For some time after her death, I was not ready to start on a book. I also became involved in various volunteer activities, and the thought of writing a book, while not forgotten, was put on the back burner. Then came the COVID-19 era, and everything changed. Much of what I had been doing was no longer possible. A close friend suggested that this could be a good time for me to write that book. That made sense to me, and I proceeded.

In rough form, I had already written much of the material for this book. As I became aware of Jan’s condition, I began writing in a journal. I did not try to write something every day, but only when I had something that seemed meaningful. On the other hand, sometimes I would write something two or three times in one day. My dad used to say, If you don’t have anything to say, don’t say it. I applied the same principle to writing in my journal.

Nevertheless, I wrote over 250 pages, plus other articles. I found it helpful to express my thoughts in writing. I often enjoyed and profited from looking back to what I had written months and years earlier. Using the word-search function on my laptop was very helpful. I recommend at least trying this practice and seeing how it might work for you.

I do not claim to be an authority about dementia or how to care for and relate to someone with dementia. I wrote this book from the perspective of my experience, convictions, and beliefs. I am hopeful that what I have written will be helpful to others. Each person is, of course, free to decide their course of action.

I have not tried to write a chronological autobiography. There are several books written in that format. I have attempted to organize this material to give a more meaningful sense of what I experienced, hoping that it might be more beneficial to you, the reader.

In college, I majored in math, with an informal minor in philosophy. Then I went to seminary and engaged in a three-year systematic study of the Bible, theology, and church history. So I like to get things, especially my thoughts, organized. But life is messy. And the life of a caregiver can feel incredibly messy, confusing, and disturbing as one tries to handle his circumstances and emotions (incidentally since I happen to be male, I ask you to permit me to use the masculine pronouns instead of using he/she, his/her, etc.). The table of contents gives how I organized this book. While I suggest reading from the beginning to the end, you are, of course, free to jump to what most catches your interest.

During this decade, I was very involved with what was happening in my relationship with Jan and how that affected me. At the same time, I was as much or more concerned with my relationship with God and how that affected me. I dedicated my life to God in Christ at the age of eight. I have pondered many questions and had my share of struggles with doubt. And then I have raised questions about and had doubts about my doubts. I will mention that I attended college at the University of California at Berkeley in the early ’60s. So I know something of what it is to raise questions.

Incidentally, you will notice that I use capitals in pronouns referring to God or Jesus Christ. Not all writings do this, including many Bible translations. It’s simply a matter of my personal preference. Speaking of translations, on several occasions, I have written a direct quotation from the Bible. All these quotes are from the English Standard Version of the Bible (ESV).

In reading this book, you will see many descriptions of what I did and felt. Each person with dementia is a unique person, and each person who has a loved one with this disease is also an individual. It is often said, If you meet one person with dementia, you have met one person with dementia. My descriptions of Jan will not be the same as how other people with this condition would be described. If you have someone in this condition, you will go through times that I went through, but you will also have your particular relationship and activities with your loved one and your grasp of what that meant to you.

But even as we may have different experiences, we still have much in common. We have a loved one in a most special condition. It makes for much heartache, stress, and loss. But traveling the caregiver road can be a very precious and heartfelt time that can give great gain.

If you are not a caregiver, have not been one, and never become one, I believe you can still find reading this book profitable. I invite you to ponder what I have written about the life journey of changes, suffering, and loss, death, etc. I do not want to set myself up as the example of how to go through this experience of being a caregiver, much less of how to go through life. I do not, and will not, claim such expertise. But I have put in the time and effort to write this book, trusting that it can help you and others.

If you are married or considering marriage, I am convinced that much of what I wrote applies not only to a marriage where there is dementia but to any marriage. This book could perhaps have a second subtitle of What Does It Mean to Be Married?

Finally, this book can also be viewed as a picture of what it means to be on a spiritual journey. It speaks, in particular, of the journey of being married to a wife with dementia. One might use this book to reflect on the spiritual journey of living through the pandemic era. We can speak of any period of history as an era. The people of that era had an opportunity to be on a spiritual journey for that time. An era may be the Depression era, the War years, the ’50s, the Vietnam era, etc. Or one could reflect on being through any particular period of one’s life—the childhood years, the high school years, the college years, the years one lived in a specific location or was in a particular vocation, or the retirement era. And so as you read this book and afterward, I invite you to ponder what period of your life you are now living or ages you have lived. Then reflect on the spiritual journey you have lived or are living now. If you are anticipating a new phase of your life, now could be the time to reflect on the journey you might have when that time comes.

I wrote this book with my family very much on my mind. My children, and most of my grandchildren, had many opportunities to see me go through the caregiver experience. There were also many friends and casual acquaintances who saw what I was doing, at least on occasion. Now I have an opportunity to share with others, both those who know me best, to those I have never met and never will personally meet, as deeply as possible, what that decade with Jan meant to me. If it at all inspires you, a reader, on your spiritual journey, I will be deeply gratified.

There is a classic Spanish saying, "Vaya con Diós. It means Go with God." As you read this book, I pray that God will go with you.

Life Is Changing

Early Signs of Change

For at least thirty years, I admired all the positive qualities of Jan. She was a very spiritual person, having dedicated her life, since she was a young child, to serving God. She was very much an extrovert who met people with no difficulty. She came from a large extended family and could always do an excellent job telling how extended family members were related. I was much more reserved and came from much smaller family ties. Jan worked, for many years, as an elementary-school teacher. For five years, she taught children at a Wycliffe Bible Translators training setting in the jungle area of southern Mexico. Her organizational skills were excellent. She liked nice things, but she was not a big spender. My wife was an intelligent charming woman, very much a lady. I often considered her to be more mature than I was.

About ten years before her passing, three early signs of her changing developed that I did not recognize until years later. They were not initially overt, but I later wondered why I didn’t recognize them sooner. My mother had dementia during the last years of her life. So I had some acquaintance with the disease. But then, the manifestations of the disease in her were different than those that came out in Jan. Nonetheless, facing that a loved one has this condition is very difficult, as I shall be discussing later. So I would not deny that I was experiencing at least some denial.

As one becomes familiar with this disease and its various symptoms, it is easy to get the impression that someone has it when they do not. This impression is especially true when observing older people. Everyone is forgetful at times, is often no longer able to do certain things as well as they once could, and goes through at least some changes over time in handling various circumstances. Any diagnosis of dementia should only be made by someone with the proper medical qualifications.

This first change typically occurred after dinner, either at home or at a restaurant. I had decided that I needed to share more of my thoughts and feelings with Jan. I figured that she would appreciate it, and it would be good for me to express myself more. Even without her suggestions, I would seek to share things with her that were quite personal. I expected that she would focus her attention entirely on me as I engaged myself in this endeavor.

However, as I continued to do this, I noticed a change in her. She increasingly did not focus her attention on me when I was sharing. At times, she even randomly changed the subject. I found that to be very frustrating, at times, even becoming angry. When I pointed out to her what she was doing, I received no response, increasing my frustration.

Some years later, I realized that her lack of focus resulted from her brain’s deteriorating state. A disease had damaged her brain to the extent that she could not focus on anything for very long. She was like so many school children diagnosed with ADD (attention deficit disorder). It saddened me to realize that she was no longer able to listen attentively. Of course, it was not the first time I had misunderstood her; after all, I was her husband, and that is something husbands can do with excellent proficiency.

The second change was what I came to see as a personality change. Jan had always been an energetic person, very engaging, and very interested in life. I saw her coming to what I referred to as a retirement rocking chair mentality. She had always been interested in and pursued a life of service to God. She began talking about how she had done that and increasingly backed off of things she was doing. For example, she had been quite involved in a children’s program at church, keeping records of attendance and the children’s achievements. She always enjoyed this kind of record-keeping and was good at it. But now, it no longer was of interest to her.

I came to see my wife as developing a whole new identity. She came to see herself as old, with lost capabilities and life increasingly difficult. She seemed to have a sense of entitlement, not needing to be the responsible person she once was, just wanting to take life easy and only doing what she wanted to do. Her emotions changed. She lacked joy and enjoyment. The illnesses, incapacities, and deaths of others deeply moved her. There seemed to be a change in her spiritually as she was not so concerned with what God would have for her. At times she expressed anger at God for the life of obedience she understood Him to have called her to live.

As happened so often, I didn’t realize, until much later, that all this was part of the developing disease in her brain and affecting her entire being.

The third change started even earlier and continued for three or more years. She seemed particularly interested in getting the house in good shape. She noted that she was getting things done that would be harder for us to do in the future as we became older and less capable. That seemed sensible at the time. She arranged for the house to be painted outside and in. Purple became her favorite color. I thought she was decorating with an excessive amount of the color purple. However, I just brushed that off as being her favorite color. So I didn’t give more than a glance when some entire walls were the color purple. She arranged for us to get a new roof, had some overdue repairs done, and did some clearing out of things that no longer had any value for either of us.

What she was doing was certainly beneficial, and I raised no objections. But with these projects, I felt I saw in her a premature and somewhat negative focus on our impending deaths. I later came to wonder if she had a premonition of what was in our future. I made some weak and futile attempts to discuss this with her. I now wish I had tried harder. At any rate, I am thankful that as the result of her efforts during those years, I did not have as many concerns later on with home repairs and upkeep, in addition to everything else that I had to address.

As time went on, I discovered more and more changes in her. Each of these was a matter of her being able to be increasingly less responsible. As a result, I progressively had to take on more responsibilities. Each of these significantly affected my life and our relationship.

I mentioned that Jan had always been a very social person. She was very definitely an extrovert. One evening, we went for a walk in the neighborhood. There was a couple, about our age, doing yardwork in their front yard. They struck up a conversation with us and then invited us to go in and have coffee with them. Jan declined, saying something about our needing to get home. In the past, she would have been the one to invite them over for coffee. In this kind of situation, Jan would have told me that we should get to know them. I asked her why she declined.

She replied, I don’t know those people.

It was apparent that not only had she become less social, but she was also more uncomfortable around people she didn’t know.

I later went over to their home. They were very friendly and understanding. I developed a good friendship with them.

In the area of finances, Jan’s father had a successful insurance business. He also made several profitable financial investments. Jan inherited her father’s business sense and ability to handle finances well. So it was a big adjustment for me when I found her making mistakes in our checking account. Usually, any errors were my fault. She couldn’t understand why I made such mistakes since I majored in math in college. I tried to explain that mathematics wasn’t really about numbers, but that is another subject. I would get after her for making these mistakes. She would simply say she would try to do better.

Jan did an excellent job of keeping financial records due to her abilities and enjoyed doing it. For years, she did most of the work in gathering the information for our income tax obligations. In 2012, I was a little nervous about her taking care of this, but everything seemed to be in order. In 2013, she was clearly incapable of doing this. Fortunately, I had records on my Quicken software and saw that her records were very incomplete. She was unable to realize the state of her records. By the grace of God, this did not result in any conflict between us. From then on, she was not involved in getting our taxes done. While that was extra work for me, it was also a relief.

When Jan’s parents passed from this earth, she and one of her sisters became the estate’s executors. It became apparent to her siblings and me that she had become incapable of carrying out these responsibilities. We agreed that one of her siblings needed to take over this responsibility. Jan initially resisted this, feeling she could still carry out this responsibility. She was unwilling, or perhaps unable, to consider the time coming when she could no longer do this.

I did not realize at the time that as her condition was changing, her capacity to look ahead was declining. She lived very much in the present. While she had some recognition of the changes in her abilities, it was increasingly difficult for her to see that they would continue to lessen. She became increasingly even more unable to see the implications of that development.

Some people with dementia live in the past. They may think they are much younger than they are. They may say they want to go home. By home, they are referring to some place they used to live, perhaps several decades ago. One man thought his wife had left him, and there was an older woman now living in the same house with him. He was thinking of his wife as she was, perhaps, twenty years ago. That older woman was his very-present wife. Fortunately, I did not have that situation with Jan.

We decided not to make an issue of Jan’s decreasing ability to carry out the responsibilities of an executor. As time passed, she became more willing to do what I asked of her. On one occasion, I needed her to sign some paperwork on this matter and have it notarized. I took her to a notary who, it was apparent, wondered if Jan understood what she would be signing. Fortunately, the notary seemed to also understand and be in sympathy with my situation. So she asked Jan to raise her right hand and affirm that she understood what she was signing. Jan obediently raised her hand and said, Yes.

Her ability to sign her name declined. Fortunately, we were able to complete the paperwork to have another sibling replace her as an estate executor before this happened.

Jan had always had fine smooth penmanship. She maintained this quality as her writing ability declined. In time, the only writing she could do was her name. It is common as people get older that their writing becomes shaky. But even when all she could do were scribbles, they were smooth scribbles. It was interesting to observe what abilities