Letters to the Children - June's Alzheimer's - 7th Year - 2004
- Published on Monday, 07 June 2010 20:02
- Written by Stanton O. Berg
The year 2004 was a transition year in which June traveled from the Middle Stages of Alzheimer's into the Late Stages of this disease . This resulted in the year being an especially hectic, sad and stressful time. To be sure, there were still days that presented enjoyable experiences but the days that I previously would call "Good Days," now took on a revised meaning of "Good."
It was also a year in which some of my own personal health considerations provided a handicap in my day to day physical functioning and ability to care for June. I had an arthritic right hip that needed a full hip replacement. I injured the hip joint in an auto accident while I was in the military service in my younger years. I was sitting in the right front passenger position of a vehicle when it was struck on the same side door by another vehicle. I thought at the time I had made a good and quick recovery from the accident but apparently this was the start of an arthritic condition in that hip joint. (The hip pains were originally thought to be sciatica pains from low back disc degeneration which I also have. I was being prepared for back surgery when someone noted the clouded right hip joint on the X-rays. Because arrangements needed to be made for June's care during my surgery, the Hip Joint replacement was delayed until 23 February 2005, the following year. The surgeon who was to perform the replacement was Doctor Mark Heller.
Because of the fast moving changes in June's Alzheimer's condition, I no longer used the periodic Letters to the Children in order to provide information to them on the condition of their mother. Most communications were by email or phone calls. Most emails were not saved except for a few that are reproduced below. This was a year of severe cognitive and personality changes in June. June who was a lady who never exhibited periods of anger, suddenly developed this unpleasant personality change. To further complicate matter's, my mother Ellen, living in Barron, Wisconsin (Approx. 100 miles away.) had been diagnosed with early stage Alzheimer's in January 2004. The diagnosis followed a period of time in which it was observed that my mother was having trouble with short term memory and handling her check book and other financial affairs. Mother's initial care was in an assisted living Home. However, after my mother fell and fractured her hip, she was transfered to the Barron Nursing Home where she remained until her death in 2007. Mother's care requirements in 2004, needed more of my attention then in the past. (This was one of the times that I wished I had some siblings to assist me.)
10 March 2004 - Email to the Children.
"Mom and I went down to Dr. Stein's office this morning and we were given a starter kit for Namenda.
Mom took her first pill this AM. - It is one a day for this week.
It was a very unpleasant morning. I do not know what Mom thought was happening but she was very upset and angry about the entire trip to Dr. Stein's office. Mom had gone down together with me to the doctor's office as we have always done in the past.
Afterwards Mom apologized and said she was "so afraid." I don't know if she fears that I am going to leave her someplace or has other fears. All of the conversations are with Mom present. Mom hears all that is said to the doctor for and about her - nothing else. All is okay now, however.
26 September 2004 - Email to the Children.
"On Friday and Saturday, Mom and I visited Grandma Ellen. As in the past, we stayed over night at the Best Western in Rice Lake and saw Betty and my cousin Burley.
Grandma Ellen does not remember much from day to day. When we arrived on Saturday she started crying when she saw us and said "I didn't think you would visit me anymore!". I told her that we try to visit her every two weeks and that we always stay and see her over a period of two days. That we would never stop visiting her. Also that we call her almost every day and that I had told her the day before that we were coming the next day. She said, "I know, my memory is so bad now!"
Unfortunately late that afternoon when we were leaving for Rice Lake we had an unfortunate incident that left me a little shaken and had the effect of spoiling the visit to Barron.
Grandma Ellen was tired so before we left we were helping her into her bed for a nap before her supper was served. Mom was trying to arrange her blanket for her while she was also trying to arrange it herself. Suddenly she literally screamed at Mom to leave her blanket alone and that she did not want it that way. This was not a simple sentence but actually ranted at Mom about it and in a loud voice. Mom looked crushed and then hurried from the room crying. Momentarily I was angry at Grandma Ellen and told her that Mom was just trying to help her and now she had really hurt her. I realized however that it was one the of moods from her Alzheimer's disease and that it was not really her fault. Mother was also a little cranky with me after that. She did not like the way I was arranging her blanket either. She then did not like the way I was adjusting her curtains and drapes. Finally as I was putting out one of the lights she told me in a loud voice that this particular light was supposed to be left on. I finally just left the room telling her we would see her in the morning.
Mom was teary eyed most of the way to Rice Lake. I tried to explain to Mom that it was not Grandma Ellen's fault that it was a part of the dementia type disease that she had. Also that Grandma Ellen really loved her etc. Mom was not buying this explanation. She just kept saying that Grandma Ellen did not like her and that she had been just trying to help her.
Of course with Mom's similar problems, logic and reasoning do not enter in. I thought that perhaps the next morning Mom would have forgotten about it. Unfortunately the Alzheimer memory eraser did not erase the memory of this hurt. It is still with her. She does not even want to see Grandma Ellen any more. When we went back the next day, she sat a few feet away. When we were at a table she moved a potted plant in front of herself so she could not see Grandma Ellen. She never spoke to her once during the entire day. When we left she waited for me in the hall outside her room. It is really sad because in the past she was one of Grandma Ellen's best friends. Always talked about her and calling her and going to see her. They always laughed and talked over the phone.
I don't know how long this will last. Other things are gone from Mom's memory almost immediately. When we go to the doctor's office for and appointment, I will tell her where we are going before we leave. Almost every time however, she will ask me about three more times while we are en-route, "Where are we going." Same thing when we go to run some errand. Apparently the memory of hurts does not work in the same way. Note: (Thankfully in less then a months time, she no longer had any recollection of this unfortunate event.)
Grandma Ellen has an incontinent problem so at the suggestion of the nurses, I picked up 2 packages of adult diapers - Pull up type. The nurse said she likes this type as opposed to the fasten on the side type provided by the nursing home.
4 October 2004 - Email to the Children.
"For the most part, the 4 day trip that Mom and I made to Wisconsin can best be described as a mixture of both pleasant and unpleasant times.
Our trip started off with a debate as to why it was necessary to see Dr. Nixdorf, the TMJ and facial pain specialist at the U of Minnesota. We had driven directly to Dr. Nixdorf's office that morning. For some time now, Mom always gets upset with seeing a doctor. Mom seems to have the fear that something bad will happen to her as a result of the visit. Dr. Nixdorf recommended that we consider discontinuing the usage of the Alzheimer's drug Aricept. Dr. Nixdorf thinks that this drug is the cause of Mom's intermittent facial pain that she has had for years. I will take this up with Dr. Stein in the near future. (I have doubted for some time that this drug is of any value to Mom.)
From the doctor's office we went directly to Bloomer, WI and the Bloomer Inn. This was followed by a number of bad moods, anger periods and in addition a very upsetting incident took place late one night at the Bloomer Inn. Mom had a toileting incident that left her embarrassed and sad and left me scrambling to take care of the matter and restore a more pleasant atmosphere. I will spare you the details.
Mom and I ended up our Wisconsin trip at Rice Lake and finally Barron.
The unpleasant times was all interspersed with some bright spots. The 2 hour Colfax Class Reunion Luncheon at the Colfax County Club was a very nice and pleasant affair. The half day with Betty was also a nice time.
I was finally able to complete Grandma Ellen's application and approval for her medical assistance on Monday AM at the Barron County Court House.
Grandma Ellen and Mom still present a tense time when they are together.
Editorial Note: Below I am reproducing my email of gratitude and thanks to Dr. D. R. Nixdorf of the University of Minnesota Pain Clinic that I sent to him on 3 January 2005. Dr. Nixdorf finally solved the problem as to the cause of June's intermittent facial pain that had gone on for years.
"I would like to advise you that we have found the cause of June's facial pain.
It was the Aricept.
I had asked Mayo Clinic about this possibility at least two years ago. They dismissed this as a possibility without much consideration.
Even Dr. Stein, June's regular doctor did not think it could be the culprit. However, because I recalled that the pain symptoms came on coincidentally with June's start of the drug Aricept almost 7 years ago, he agreed to drop the drug and see what happened. The first week June was off the drug, she had a mild episode of pain a day or two after stopping the drug. This was probably the remnants of the drug still in her system. Since then she had had no facial pain whatsoever. This is about 2 months now.
Your suggestion to investigate this possibility was right on!
I have been praying about this for the last year or two. I thought it was an accident that we came to you in the beginning after already having gone to 3 ENT's and another Pain Clinic and with no results. God must have steered us to you! thanks for improving June's quality of life.
Dr. Nixdorf responded: "Hearing that June is feeling better is the best news I could hear!"
6 October 2004 - Addendum - Email to the Children.
"I am always amazed at Mom's prayers of grace before our meals.
Mom always uses the prayer to thank God for all he has done for us.
Mom is a lady with Alzheimer's, who has had open heart surgery with triple bypass, a subsequent heart attack, angioplasty, and has almost daily facial pain, yet she always thanks God for all he had done for us. She does it every time she prays."
Editorial Note: Most of the time after June has thanked God, June will become mixed up in her prayer of grace and will have difficulty in finishing the prayer. I will step in an finish the prayer for her...but never before she has given her thanks to God. What an amazing women at life's lowest point! How could I have been so blessed as to have June in my life!
6 October 2004 - Email to the Children.
"This is my day to write some happy things about Mom. She continues to do things that amaze me.
I have sort of accepted the idea that with Mom's Alzheimer's problems that she is not that aware of the things going on around her. Of course for many things she is not.
I have had a particularly bad month with my back and right hip. Of course this has been around for 5-6 years, but is gradually getting worse.
For most of the past month I have resorted to using a cane. I have had one for 2 years or more but have been embarrassed to use it. And of course, I have managed to get around pretty well without it. Now however, if I did not use it I probably would not be walking more that a few steps.
I did not think Mom really was that aware of my physical problems.
I have however noted that when we drive to Wisconsin to visit Grandma Ellen and when my right leg is aching and I start massaging it with my hand, Mom will take my hand away and she will start massaging my right leg with her own hand.
This morning I awoke to find Mom stroking my cheek and softly crying. I asked her what was wrong. She said: "I am praying for you that you will get well".
Because of the daily ravages of Alzheimer's Disease on Mom's mind, and her anger moods, I tend to underestimate Mom in so many other areas.
Editorial Note: It was during this same time period that June and I were returning from visiting my mother at Barron, Wisconsin. Because the sun was low in the horizon, the drivers eye shade or visor would not drop down low enough to keep the sun out of my eyes. June insisted on holding a small booklet by hand in such a manner as to shield my eyes from the sun. I did not want her to do this as I worried about her arm getting tired. She insisted on doing it until the sun was no longer a problem.
6 November 2004 - Email to the Children.
"Just a note to let you all know how Mom's life is going.
Overall however, Mom has a relatively good life. She is functional with limitations.
Everyday however is replete with incidents that demonstrate the progress of her Alzheimer's Disease.
This morning as I was taking my shower, Mom carried a bunch of clothes hangers into the bathroom and wanted to give me one in the shower. I am not sure what she had in mind but I assume that it was so I could hang a shirt on it at some point and was just not aware of her timing or that I was in the shower at the time.
Finding things is an ongoing problem. She cannot relate size and shape to what we are looking for and to keep that in mind. The other day we were looking for her glasses. Mom held up a panty liner "depend" and asked if this was what we were looking for.
Finding her lipstick is a frequent item. At least a half dozen times a day Mom will ask me where her lipstick is. I will always say "it is in your purse." - "Find your purse and you will have a half dozen of them." She usually refers to "my mouth" when indicating that she needs a lipstick. She almost never refers to it as a lipstick.
Mom does not always know what I mean by her purse. I will relate it to where she keeps her billfold or describe it as the dark blue bag that she carries over one shoulder. Many times she still does not seem to understand what it is. At other times Mom will understand what I am talking about and will go about finding it. Mom will need help most of the times.. Sometimes Mom will look for her purse in a small drawer or other small place that could not possibly contain the purse due to the size. I try to keep in mind the most common places for her to put the purse. Unfortunately, at times she fools me. At times it concerns me because if we do not find it, we may have a problem with missing checks, her ID etc.
This morning Mom tried to make toasted English Muffins. She did not remember that we normally go out on Saturday mornings for breakfast. (Actually we go out most mornings.) The problem however, was that she had buttered the muffins and was microwaving them. All that does is melt the butter and dry out the muffin. Mom never thinks of using the toaster anymore. (I try to avoid the problem by doing it for her but at times she wants to do it herself.) When I tried to explain what went wrong, Mom became angry and threw them all in the trash. Life however was soon back to more normal when we had a good breakfast at Baker's Square.
And so it goes...
Christmas Notes for 2004:
Christmas for 2004 was a relatively sad Christmas for the family and for June. It would be the last time that the family celebrated Christmas Eve together. June would go into an Alzheimer's facility (The Wellstead of Rogers) three months later in mid March 2005. Susan was able to come out for the Christmas Holidays from her home in Cary, NC. A special family meeting of the children was held during that time to discuss the recent changes taking place in their mother June's personality as a result of Alzlheimer's taking more and more control of her life. June was now in what appeared to be middle to early late stages of the disease.
During the family meeting, I was describing a recent kitchen knife incident that concerned me. One evening during the previous few days when June was in the kitchen, she had taken a large sharp carving knife from a block of kitchen knives and was standing holding it. I became concerned that June might hurt her self with the knife. When I went to take the knife from June, she became very angry and backed away from me still holding the large sharp knife at an arms length away to the side of her body. I did not believe that June ever intended to harm me with the knife but seeing her anger and knowing that it was the Alzheimer's that was controlling her at that moment, the thought crossed my mind that this was the perfect set up for a disaster. She could easily have injured either of us by accident. After quietly tallking with June, I was able to secure possession of the knife. After relating this incident to the children, they felt action should be taken to remove all sharp knives from harms way. Susan who was staying in our home over the holidays, was given the assignment of locating all such dangerous knives and removing them to a secure place - which she then did immediately following the family meeting.
Julie who had just recently moved to Columbia Heights, hosted the normal Chirstmas Eve family celebration in her home that year. My mother/Grandma Ellen was in the Barron, WI Nursing home at that time. She had experienced a fall during the year and fractured her hip. She was in a wheel chair because of the hip fracture. Mother/Grandma Ellen had been diagnosed with early stage Alzheimer's in January of that year. June at this point being in the middle to late stages of the disease was having almost daily bouts with mental demons. In spite of June's own problems with this terrible disease, she still looked at herself as one to assist with my Mother Ellen's care when ever the opportunity presented itself. The unpleasant event in September involving my mother had been erased from her mind. The above picture taken of June and Ellen at the Barron Nursing Home during the Christmas Season is a good example. My Mother Ellen had just become 96 years of age with a birthday in mid December. The picture shows my Mother Ellen dressed in a bright red Christmas outfit. It also show June (age 77) holding my Moher Ellen's right hand. June has her normal big smile in place. Looking at the photograph always makes me emotional...June who was undergoing the greater amount of daily stress and mental impact, was trying her best to minister to her mother in law Ellen! Her compassion and love was fighting it's way through the surrounding clouds of Alzheimer's darkness.
Photo notes: The top photo of June was taken at the forensic science conference of the Minnesota Division of the IAI at the Holiday Inn East, St. Paul, MN during September 14-17th, 2004. The 2nd photo was taken at the White Tail Country Club in Colfax during the annual luncheion of the Class of 1946 in late September 2004. June is laughing with one of her class mates. The 3rd photo was taken on Thanksgiving Day 2004 in the Barron Nursing Home. June and I had gone to Barron to be with my Mother Ellen on Thanksgiving Day. Our daughter Julie and her friend Jerry had also joined us at the Barron Nursing Home. The picture shows Julie with her arm around her mother June as they are about to sit down to a Thanksgiving Day dinner. The bottom photo was taken at the Barron Nursing Home, Barron, WI during the Christmas Season 2004. June is sitting with my mother Ellen Silbaugh. The unpleasantries of a few months earlier had passed from her mind. My Mother Ellen was diagnosed with Alzheimer's in January of 2004. June was in her 7th year after diagnosis in January 1998.
June and Stan’s travel Log for 2004
2004: - September 14-17th – St. Paul, MN – Holiday Inn East Hotel - MN Division of the International Association for Identification conferences.
2004: - October 1-4th - Colfax, WI – Bloomer Inn. Luncheon at White Tail Country Club, Colfax. – June’s 1946 Colfax Class Reunion.
2004: - November 25-26th – Barron – Rice Lake, WI – Thanksgiving Day was spent with my mother Ellen Silbaugh at the Barron Nursing Home in Barron, WI. Overnight accommodations were at the Best Western Motel in Rice Lake. We returned to Fridley the next afternoon. (Our daughter Julie and her friend had joined us at the Barron Nursing Home for their Thanksgiving Day Dinner in order to make it more of a family affair.)
2004: - December 25th - Barron – Rice Lake, WI June and I spent Christmas Day (Saturday) with my mother Ellen Silbaugh at the Barron Nursing Home. We spent that night at the Best Western Motel in nearby Rice Lake and returned to Fridley the following day. June and I had spent Christmas Eve with the rest of the family in the Twin Cities area. Julie hosted the Christmas Eve festivities at her home as she had done for the past few years.
2004 Travel Notes summary: Because of June's advanced Alzheimer's in 2004, we discontinued all air travel. Our travel during 2004 was auto travel that we could easily do within the state of Minnesota and nearby Wisconsin. The only forensic science conferences that we attended together that year was the conference of the Minnesota Division of the IAI that was held in mid September at the Holiday Inn, St. Paul - as indicated above. I attended the annual conference of the Association of Firearms Examiners held in Vancouver, BC, Canada in late May of 2004, (25 – 28 May) only because they were presenting me with their annual "Member of the Year Award". It was their 35th anniversary and I had prepared the official anniversary history of the organization. I made arrangements for June to stay with her sisters Lenore and Betty at Betty’s home in Rice Lake, WI during this week. It was a lonely conference without June! We had traveled so much together in the past and were almost annual fixtures at the meetings of this organization. I called June daily from Vancouver. My impressions from my phone conversations with June were that the three sister arrangement was not going that well. June sounded anxious to return home. June and I later attended the annual Colfax Class Reunion luncheon at the White Tail Country Club in Colfax in early October 2004. We also made many short trips to the Barron-Rice Lake area of Wisconsin in order to look after my Mother Ellen who had been diagnosed with Alzheimer's in January of 2004. Early in the year 2004, my Mother was placed in an Assisted Living facility in Barron, WI. Mother had her own room, interacted well with other residents and appeared happy with this arrangement. Mother was later transferred to the Barron Nursing Home later in the year after being hospitalized following a fall and a fracture of her hip. My mother was in the Barron Nursing Home during the Thanksgiving and the Christmas seasons in 2004. June and I arranged to spend these two holidays with mother at Barron. Our daughter Susan also came up from Cary, NC for the Christmas Season.
Final Note: On October 23rd, 2008 , June passed away after almost eleven years of an exhausting battle with Alzheimer’s. June's final three years and 8 plus months were in an Alzheimer’s facility. ( Benedictine Health Care Center of Innsbruck, New Brighton, MN.) See the article on June’s funeral notice. It is located on the top blue navigation strip under the label: “In Memoriam”. Click on: