CHAPTER 1
Early Warning Signs
It was early fall in 1987 when we received our first clue that something was wrong with Mom. We did not take it too seriously at the time, thinking it was just a one-time difficulty.
My husband, Neil, was pastoring a church in Langdon, North Dakota, and my time was divided between church work, mental health counseling, and teaching a number of piano students. Our two children were grown and on their own, so there were just the two of us. My father passed away in 1975, having suffered many years from asthma, pulmonary emphysema, and parkinsonism.
Mom remarried in 1979, but a few years later, her second husband, Xena, developed parkinsonism also. The two of them resided in Walla Walla, Washington, where she cared for him. It was during this time that we received a phone call from her that Xena had taken a bath and she did not know how to get him out of the bathtub. It seemed humorous to us at the time that she would call us in North Dakota, as though we could help her from that distance. She was at a total loss and somewhat panicked as to what to do. It never occurred to her to call my sister, June, who lived nearby or to ask help from a neighbor.
Early in 1988 Mom was unable to continue caring for Xena, so he was placed in a nursing home. She continued to go there three times a day for six months to feed him his meals and spend time with him. The stress was taking its toll, but we were not aware of how entangled it was with the beginning signs of Alzheimer's.
From time to time we received phone calls with questions on how to pay her bills. It was not so much a matter of finances as it was of how to write a check and process details. Her sense of organization was slipping. It was especially peculiar to me because she had taught me record-keeping skills. I could not understand her inability to do simple, ordinary things she had always been doing.
In July 1988, Xena passed away, and Mom was once again faced with being alone. The thought seemed to unduly frighten her, and we just assumed she was struggling with grief. We invited her to spend the winter with us in North Dakota to try to gain a new perspective. She was quick to accept our invitation.
Looking back, grief was only a part of the picture. While with us, she exhibited extreme paranoia about people stealing things from her. She would hide things to avoid theft and then forget where she put them. She had an unusual mistrust for professional people such as doctors, bankers, and lawyers, thinking they were somehow out to get her. Dental visits became a real chore because she would argue with the dentist's report and deny there was a problem.
After six months Mom wanted to return to Walla Walla. Hoping things would stabilize for her, we took her back. Within three months we realized her memory was continuing to deteriorate so that her concept of time, organization, and schedules no longer held any meaning. It was beginning to make sense why she was having so much trouble paying bills and preparing simple meals. Fortunately, she always maintained a good appetite.
There were no easy answers: June was not able to care for Mom, and there was no one else but us. Since she did not do well with the North Dakota winter weather, if we were to care for her, it would require our relocating to the Northwest.
After some investigation, it was apparent that no churches in our denomination were open in Oregon or Washington at the time, so we decided to inquire about like-faith denominations. The Lord opened a door for ministry in Auburn, Washington. After much prayer, we decided to make the pastoral change and have Mom move in with us.
Rather than arguing over breaking up her housekeeping and selling her home, she seemed quite relieved to come along with us. The Lord went before us each step of the way, preparing her mind and emotions for the change. It was hard to believe the whole process went so smoothly and without trauma for her.
Little did we know how precious the promise in Romans 8:28 would become to us: "And we know that all things work together for good to those who love God, to those who are called according to His purpose." The words work together have the meaning of "synchronizing things together," and if we ever needed that concept it was then. The "challenging" and the "mundane" were perfectly worked out into a beautiful mosaic. God's grace, given to us through His Son, Jesus Christ, became the seasoning that made the hard things palatable and gave meaning and purpose to everything.
One leading Christian man tried to convince us to place Mom in a nursing home rather than take her into our home so that the Lord could more fully use our talents in ministry. His thought was that her care would place great limitations on us. This idea may have seemed the most reasonable, but it was contrary to what we felt as the will of God for us. We chose to walk by faith and trust the Lord to "synchronize" the needs of the new church we were pastoring, Mom's needs, and our needs. We were confident that His promises were equally true for each one of us. We knew the circumstances could be overwhelming without the Lord's strength and wisdom but were willing to trust Him with all of the dynamics and details.
When first entering the ministry, we enrolled in the "School of Faith." Some lessons came easier than others. Many learned out of a textbook were quickly put to use. Others that were not fully understood needed to be taken by greater faith and required years of practice.
In addition, we needed a refresher course in the "School of Patience," for our home would become the classroom for intensified testing like never before. It is interesting what James says in Chapter 1, verses 2-4: "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing." And yet, by nature, my tendency was to avoid circumstances that would lead to pain and discomfort. The Lord in His wisdom, however, allowed us to be confronted with this situation so He could produce much growth and blessing.
I am reminded of school days when I sometimes held until last the harder assignments, maybe thinking somehow they would just go away. Eventually deadline pressures forced me into the discipline of learning. Perhaps God was exercising a little pressure to develop Christian maturity in us so we could be more effective?
It is easy to feel we have had enough stretching in some areas, but we are ever learning as we walk the road of new circumstances. The question might be asked, "Are we really so wise that we should do the choosing of our circumstances?" I don't believe we would ever choose pain to develop Christian maturity.
CHAPTER 2
Attitude Adjustments
Caring for an Alzheimer's patient put my emotions on a roller coaster. The extreme memory loss impacted everything and everyone around us; change became the constant. I needed an attitude adjustment and a new vision through God's eyes to deal with this.
The first feeling I wrestled with was tied to denial. I knew Mom needed to be with us, but I wanted to believe that Alzheimer's only happened to other people. Surely what she had could be treated.
An appointment was made quickly with a specialist who conducted many tests. Every other possibility of disease was ruled out, and while a 100 percent diagnosis of Alzheimer's cannot be given until an autopsy is performed, she had all of the classic symptoms. It was necessary that we accept the doctor's report early on to be able to cope with the illness.
Feelings of anger flooded over me as I thought of how unfair this was for her––this was my mom. If she had just been some old reprobate, it might have been easier to accept. I thought of how she would be giving up everything, most of all her thinking capacity. She would be moving from independence to total dependence.
It was difficult to think of becoming the parent and Mom becoming the child. Besides, I still had so many things I wanted to learn from her and share with her. She always had so much to offer to others. No longer would I be able to share special moments and occasions with her. In a way, I felt I still needed her and wasn't ready to give her up, especially to something like this. She was being cheated out of life, and so was I. Were precious memories all that would be left?
Then I began to think selfishly of the freedom and things we would be giving up. How they paled in contrast to Mom's situation, however. It was great to have our children grown and on their own, but now we were going back into "childcare" in reverse and at a time when we were enjoying just being the two of us and looking forward to retirement within a short time. Some people call it the "Sandwich Generation."
Another concern was for our church in North Dakota; it was growing and revealed such potential. Why couldn't she adjust better to the very cold climate there? It would have been so much easier to bring her to North Dakota than to think of relocating just for her sake.
Still another issue was that my counseling degree had been completed only a few years earlier, and my counseling practice was going very well. Would all my training just be for nothing? And what about my many piano students? But could it be that some of my training was preparation for the events ahead?
Truly this was a time for soul searching. Praise the Lord, when we walk with Jesus, He does not leave us without answers and without hope. We are never put out on a limb for Him to chop it off behind us. He meets us where our needs are, where we hurt, where we lack understanding and good judgment. Proverbs 3:5-6 came to mind: "Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths." Well, we certainly needed direction.
I also thought of Psalm 37:4: "Delight yourself also in the Lord, and He shall give you the desires of your heart." How in the world could that be possible with these circumstances? The impossible came true, however, as I asked Jesus to mold me into His image day by day. My attitude adjustment did not happen overnight, but continues as an ongoing process as I yield myself to Him daily, like clay in the hands of a potter. As a result, my desires were and continue to be transformed into His desires, and the preceding verses became a personal reality. We could both look to the future with joy even though uncertainties were present as to how the Lord would "synchronize" all the details. Fortunately we did not need to know "how" as much as to simply "trust and obey." When I use the word we it is because my husband accepted the challenge as well and has been a very loving support throughout the experience. God may not assign everyone to this role, but we felt His call upon our lives and we accepted it, not out of duty but out of love.
Rather than looking at a negative future and having our lives put on hold, we were determined that we would view it simply as different than we had planned. "Different" does not mean good or bad. With this in mind, the Lord helped us make the necessary adjustments that allowed us to live our lives to the fullest and continue the ministry that was before us.
I often marvel at the creative mind of God. And wouldn't you know, He had wonderful things planned for us, things we could not have imagined let alone put together. He truly does care.
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You may be wondering what attitude adjustments Mom needed to make. What was she feeling? Over the years the Lord gave her a warm, loving spirit which made it a joy to care for her. Memory loss, however, caused her to become easily and quickly dissatisfied and irrational. Her reality was always changing, and her tolerance level was diminishing greatly.
Worry became her constant companion. Originally we thought it might be a blessing for her to live in an imaginary world where worry and cares would be set aside, but she only exchanged real worries for imaginary ones.
She questioned me several different times about a "black hole" concept where it seemed like her life was being funneled. She was unable to describe the scene and always exhibited great fear and trepidation when discussing it. Rather than developing it further, I usually tried to bring comfort through a hug and then tried to change the subject.
Mom also had a sense several times that something was drastically wrong with her because she had trouble remembering her brother's and sister's names. She would ask what was wrong. While I did not try to shield her from the truth, a simple response always seemed sufficient, coupled with much reassurance that she was not alone. A cup of tea or hot chocolate would then be a welcome change.
Part of her daily routine was writing out her sibling's names and her birthday on any kind of paper that was available. Tablet paper was always in her room, but many times she bypassed it and tore pages out of books or albums. It did not seem to matter what she wrote on as much as the fact of going through the memory exercise. New sheets were found daily here and there in her room. It must have been a haunting fear that she would forget her family and birthday.
In addition, papers were found throughout her room of attempts to write letters to her mom and dad, who had died many years before. Since this held so much meaning for her, I would encourage her to write letters periodically, though nothing was completed. Just doing it meant a lot to her for the moment.
Her greatest attitude adjustment was not so much in giving up her home and coming to live with us or of mind deterioration but giving up her driving. I will address coping skills later in the book in that regard.
I never wanted Mom to feel abandoned. I cared, but I always knew God cared even more. My desired response was to keep trying to convey that great love.
Perhaps the most important ingredient in our relationship with Mom was a high level of trust. The Lord helped us maintain that throughout her sojourn with us. She seemed to feel at home and never once talked of going back to Walla Walla. It was as though that chapter had been erased from her memory. Her greatest needs were probably a sense of belonging and being loved, as well as safety and security. These we tried to provide with the Lord's help.
CHAPTER 3
The Pilgrimage Begins
We arrived at our new pastorate in Auburn, Washington, in November of 1989 with great excitement and joy. Much prayer preceded the unanimous call that was given to us.
The church put us up in temporary housing for a couple of months while we waited on the closing of a home we had purchased. Most of our things remained packed in boxes, and we made do with a few necessities. We called it the "Boxer Rebellion." The church was most helpful in supplying needs during our transition.
In December we went to Walla Walla to see how Mom was getting along, hoping that she would be all right until we could get settled in our new home in January. It did not take long, however, to realize that she needed help right then.
A look at her telephone bill revealed three pages of calls to check on the time. Monthly bills were not being paid. Her meals were about the same all the time and quite insufficient. She also expressed great apprehension about being alone.
We were none too early in caring for her. In spite of what seemed like poor timing, we were reminded that our loving Lord is always on time––never too early, and never too late. We decided to take the rest of the week in getting her moved. This meant packing all her things, loading them in a U-Haul truck, cleaning her mobile home, putting it up for sale, and caring for any loose ends. It seemed an insurmountable task in such a short time, and all the while, I marveled at how she was processing these changes without any sense of questioning or hostility. I kept thinking that I would have been quite upset should one of our children have come in and started taking over my life. The Lord prepared her emotions in a marvelous way for what could have been so extremely traumatic, but she wasn't even asking any questions.
Our trip back to Auburn went very well. After arriving we decided to store Mom's things in the truck for the rest of the month and then move them directly to our new home, thus avoiding the handling of everything twice. The truck rental fee actually turned out to be cheaper than returning the truck and re-renting it again later. Isn't the Lord good!
Though we were in a temporary setting, Mom adjusted as though she had always been there with us. Nothing seemed unusual about the new arrangement to her. She did not question the change or ask about her things. It was as though her past life had been wiped out. Perhaps this was the Lord's way of protecting her in her declining years and with whatever changes would take place in our lives.
December was an extremely busy month. January came quickly, and we were anxious to get settled in our new home. Much help was provided, making the transition a great deal easier. Again, Mom made the adjustment without question. What a praise to the Lord!
