17 June 2002

TO:  Dave, Dan, Sue and Julie:

Re: Mom

When I last sent you an update, it was 6 months ago in December. That update was rather bleak - I was reporting on all of Mom’s many health problems as well as the failure of my attempts to get Mom into the Alzheimer's Disease Vaccine trials. I looked at the vaccine trials as our last chance or opportunity to save Mom. I have now accepted that fact that we have travelled beyond the point of no return - that we need to make the best of the future. I hope that this update will have a few bright spots.

When I last wrote about Mom, I was also very frustrated and unhappy with God. Perhaps God was of more help than I realized at that time. It turns out that the worldwide vaccine trials were stopped shortly after they were started. Some of the people in the vaccine trials developed an inflammation of the brain early in the trials. This prompted the drug manufacturer to call a halt to all trials worldwide. Mayo had only a few people in their trial allotment, none of which had developed this reaction at that point. These events happened shortly after the trials were started and who knows what would have happened to the other participants later if the trials were permitted to continue.

 I am thankful that Mom's Alzheimer's Disease appears to have slowed down and it is somewhat at bay. When Mom was first diagnosed with Alzheimer's Disease four and one half (4-1/2) years ago, I doubted that she would be in any condition to enjoy our 50^th anniversary this year. (August 16th) While she may forget my birthday and father’s day, she remembers that our 50^th anniversary is this year. She tells everyone about it at every opportunity!

      Editorial Notes: This manner of memory decline is consistent with the usual progress of Alzheimer's. The short term memory is the first to go. The long term memory is then slowly lost. Our daughter Julie hosted a large gathering of friends and relatives at her home to celebrate our 50th anniversary. Our other daughter Susan and grand son Daniel came home from Cary, NC. All of the family was together. It was truly a wonderful time and it appeared that June enjoyed it immensely. It was almost as if she had no Alzheimer's on that day.

     Photo Notes: The first photo on the top right shows June and I with my mother Ellen at our 50th Anniversary celebration.  My mother Ellen was also in middle stages of Alzheimer's disease at the time. (My mother Ellen was diagnosed later but passed away earlier.) My mother Ellen passed away almost exactly one year before June on October 21st 2007 at a nursing home in Barron, WI. The second  photo below  was taken at our home at 6025 Gardena Lane in May 2002.  This is a family favorite picture that reflects the joy of our marriage.  The  third and fourth photos below,  show June standing by Martin Luther King Jr''s famous Ebeneezer Baptist Church in Atlanta while the second one is June having her morning breakfast at the Marriott Marquis in Atlanta, Georgia - during the week of February 11-16, 2002.. The bottom photo shows June at the forensic conference of the MN Divison of the IAI held at Owatonna, MN during September 2002. June is on the left sitting at a banquet table with Jenny Jaspersen, the Secretary-Treasurer.

This same year (2002), It was my goal to do as much traveling with June as possible during the time that June had remaining, before Alzheimer's would inevitably close down her activities and finally her life. I wanted her life to be as full as possible. Our trip to Atlanta was done in connection with the annual conference of the American Academy of Forensic Science. June had a number of friends in the Academy.  While the photo of June in Atlanta, shows June's normal million dollar smile, one can see that her face lacks her usual sharpness and has taken on a sort of faded look. Our daughter Susan in Cary, NC, made arrangements though a friend to spend a week at a sea shore beach house on Holden Beach, NC in early April. I in turn arranged to fly June and her sister Betty to Cary, NC so that they could spend this week with Susan on the beach. We also attended the conference of the Association of Firearm's Examiner's at the Adam's Mark Hotel in San Antonio, Texas during May and June of that year. The conference of the International Association of Blood Stain Pattern Analysts (one of June's favorite groups) at the Hilton Hotel in Harrisburg, PA followed in early October. Closer to home, we attended a Minnesota State forensic science group (MNDIAI ) meeting at Owatonna, MN during mid September. Finally, June and I took the Amtrak to Milwaukee over June's birthday in November in order to spend some time with June's sister Lenore and her husband, who lived in West Bend, WI.

We have many people praying for Mom. As you are aware, I joined Pat Robertson’s Christian Broadcasting Network 700 Club sometime ago. Recently they set a week of prayer (April 29^th-May 3^rd) and offered to have a prayer partner at CBN pray for one's needs. They cited one of the Gospels of Matthew (18:19-20)  "Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them" I sent in the prayer request for Mom for a prayer partner to pray for her that week. During that week I prayed for Mom at least three times every day. I hope it is working. We of course have the prayers by our own Redeemer Lutheran Church. Even our friends in the Catholic Church are praying for her. Specifically her old school-mate John Sanford in Mora who arranged  “Special prayers and Intentions” for Mom at the Mass in his Catholic Church on a Sunday in early January. He also mentioned special prayers to St. Olaf (sounds like a good Scandinavian) who he thought, would “feel right at home “ in our church as well as theirs.

We went back to Mayo at Rochester for their requested annual check up on May 23rd-24^th of this year. We went down on the 23^rd late in the day and stayed over night for the examinations the following day. Mayo wanted to do an annual MRI, then interview Mom and finally do psychological testing. I vetoed the psychological testing on the basis that it could not help Mom and only added to her distress level. Last year when she went through (2-3) hours of testing she said it was the worst day of her life. I could see the necessity of doing it the first time but not on a follow up basis unless it could be used to help her. They agreed that it would not help her and that it was really a part of their research. Dr. Knopman also agreed that based on her memory loss, such testing would be a pointless exercise in any event. The scheduling nurse expressed some surprise that such testing would cause Mom distress. Why they would not know this is beyond my comprehension – and they are supposed to be the Alzheimer experts. Dr. Knopman compared last years MRI with this years MRI and saw no significant change or shrinkage in the critical areas. He said any changes appeared to be very subtle. This, he said was good. On the other hand he said he gave Mom a brief conversational memory test during his interview with her. The results of a test in which one could score 30, Mom scored 11. He said last year she scored 17. He described her memory as severely impaired. No changes were made in medications. They always manage to do something to cause me to have a lowered confidence level in their work. The doctor commented that Mom was on 5 mgs of Aricept per day. I had to correct him and point out that it was 15 mgs of Aricept a day and that she takes it as 5mgs three times a day in order to increase her tolerance levels for the drug. He looked surprised and quickly checked the charts to verify this. I pointed out that Dr. Stein went to this level last year based on his, Dr. Knopman’s recommendation at that time. He also seemed surprised that Mom does as many things as she does around the home based on the time since her initial diagnosis. This I would also assume is good.

 I managed to embarrass myself again as usual. One of the nurses was interviewing me on changes that had taken place with Mom. She had several pages of questions. I thought I was going to get through it all without falling apart but I did not quite make it. I was pointing out how Mom used to travel about the city of London on her own, going on the city buses, the underground/subway and meeting me back at the hotel in the afternoon for high tea. She did all her own navigating and planning of the day’s activities. I compared that to the present time where she cannot even go through our local airport without becoming lost. Recently she told me that large stores such as Target can be hard for her to navigate on her own. That was as far as I got before becoming so emotional that I just couldn’t continue any further. The nurse tried to get me to agree to join a local support group. I told her I would consider it, but I frankly don’t see how it is possible under the present circumstances. The timing of  "support"  group meetings is not compatible with properly caring for Mom. Mom was waiting in a reception area and browsing some magazines when we returned. I thought I was fully composed. In spite of Mom’s many problems she is very perceptive. She immediately said: “Why have you been crying.- What did they tell you – Did I do something wrong?” I assured her that it was nothing she had done and it was nothing they had said, it was just me and my emotions.

Mom and I then had lunch at the local Rochester Appleby’s before returning home. Mom was cheerful on the return trip. That night however, Mom was feeling down and tearful, thinking about how hard many things had become for her. The next morning however, every thing seemed fine once again.

From a vocabulary standpoint it has been a bad year for Mom.

Mom has also had some mood and personality changes.

 Mom will  frequently get angry at me about things that would surprise me. Such moods do not last more than a short time. If I hug her and tell her I love her, she usually and quickly gets over whatever it was that brought it all about. It is many times frustrating to me because she appears angry over things that I think are being done in her best interests. Of course, Mom does not understand this and may not be capable of understanding it.

The cause may be simple things like taking her daily medications and vitamin pills. I try to schedule my own medication pills or vitamins for the same time. I want Mom to see that I am also taking pills. Sometimes it works and sometimes it does not. Usually, if I wait a bit, the mood will change and the problem will go away.

 During those times I have to remind myself that it is the Alzheimer's disease that is doing it and not Mom. Unfortunately such moods are becoming more frequent. Most of the time she is  the normal sweet, cheerful, caring and loving type person that she has been all her life.

Examples of daily incidents that cause Mom problems would be: Walking up to the microwave and then not knowing what to do. I then usually just reach over her shoulder and punch in the required data and things then go on. At other times the microwave may not be a problem. She has been having increasingly more difficulty in using her checking account, writing checks and taking out cash.

 Mom is super sensitive and is very easily hurt. When you are visiting us, it is important to keep her involved in the conversation. Sometimes it is easy to forget her when one gets all wrapped up in commenting on and solving all of the world’s problems.

While Mom knows the world has a problem of terrorism, she is not capable of discussing the causes and solutions. This often leaves her left out of the conversation for a period of time.

 There have been times following a visit, that Mom has felt very emotionally down and referred to herself as feeling like a “non person.”

These mood changes are apparently not evident to visitors who spend a short time with us. I am sure that to them, all appears well.

Mom appears to be driven by a compulsion to work hard and be active. Some of the things seem to me to be unnecessary. It appears that perhaps she may feel that staying super active may stave off some of the effects of Alzheimer's. Perhaps she is right. Almost every day she will have a project. Many times it is cleaning out a closet, a dresser, or shelves. Sometimes she will start on a new project before she has finished the last project. She does a lot of cleaning! Although I squeegee down the shower stall and walls every morning and rinse out the tub, Mom will get in the tub later and wipe it down and dry it out again. Mom will almost on a daily basis, scrub around the bathroom stool. When I point out that she just did it the day before and that it probably is not necessary – her stock answer is “that’s okay”. Almost daily Mom sweeps the sidewalk and the driveway including the curbs.. When I suggest she ought to relax a little and that it isn’t really necessary she will reply with “it doesn’t hurt me any.” The laundry basket never has more than 1 day’s clothes in it and usually not even that. The wastebaskets are kept scrupulously empty. The table is promptly cleared after all meals, never taking time to relax for a few moments. Sometimes Mom starts the clearing process before she has completed her own meal.

Mom really needs your visits and your companionship now more than ever. Mom always asks when one or the other of you will be over. Unfortunately it seems that there has been a gradual and an almost sharp cut back on some of your visits. Some of you may not want to deal with the changes that  Alzheimer's has caused in Mom's personality.. There is the tendency to turn away from those things that make us uncomfortable. If I can deal with it 24 hours a day, I am sure you could handle 1 hour a week.

If the shoe were on the other foot, would there be any question about how often Mom would be the visitor? One has only to look back at what Mom did when her own Mother (Grandma Haldis) was struck down with a severe stroke. Mom drove 200 miles round trip weekly (spending 2-3 days a week) every week for two years - in order to spend time with her own Mother. Normally during that time, Mom would have traveled with me to the various forensic science conferences. However, during the time period of her own Mother's sickness, she set aside all personal travels and vacations in order to be able to spend needed time caring for her Mother. She did not do this out of obligation, responsibility or duty; she did it out of love. That is where Mom tends to stand out "head and shoulders" above most of humanity.

I am afraid that as usual, this has gotten longer and more rambling then I first intended.

 Love,

Dad

Final Note: On October 23^rd, 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: “June K. (Rolstad) Berg – In Memoriam”.