Letters to the Children - June's Alzheimer's - 4th Year - October - December 2001
- Published on Wednesday, 05 May 2010 20:54
- Written by Stanton O. Berg
17 October 2001
TO: Dave, Dan, Sue and Julie:
Mom is well past her Cardiac Rehab and appears to have made a very good recovery from her heart surgery. She has no symptoms of that problem that I can observe. While we have not made any major changes in her diet, the Abbot Hospital people have suggested avoiding high cholesterol foods. One item was bacon, one of Moms favorites. Bacon, lettuce and tomato sandwiches have always been her favorite. Abbot advised that while they do not recommend it, Mom could have a BLT once a week. It has been hard getting Mom to go along with this. She has gotten angry at me more than once when I suggested that she had already had her weekly allotment of bacon. Any so-called verbal logic on my part seemed to make little difference. Mom was not persuaded that this was in her best interests. We would both end up being upset and Mom would be in tears over it. See seemed to think that I was treating her like a baby. In the overall, I sometimes wonder if it is worth the hassle. I am sure that Mom's Alzheimer's Disease, now in the 4th year has much to do with her anger reactions. Such displays of anger are totally out of character for Mom!
I know that you are all aware of my efforts to get Mom into the Alzheimer's Disease Vaccine program that will be tested by Mayo. I am not sure where we are presently at in this regard.
You may recall that an article appeared in the 29 August 2001 issue of the Minneapolis Star entitled “Mayo Clinic will test Alzheimer’s vaccine in Humans”
The next day I prepared a letter to Dr. Ronald C. Petersen who heads the Alzheimer’s Research Center at Mayo. This is a branch of Mayo’s department of Neurology. I wanted to formally request that Mom be considered as a participant in the trial. I referenced her Mayo Neurology patient number and also her registration Number. in the Alzheimer's Disease Research Center. I pointed out that she would fit the mild to moderate Alzheimer's Disease category that they would be making their selections from. The selection process was to be started in September.
On the same day I addressed a letter to Dr. Daniel Stein requesting that he also send a letter to Dr. Peterson at Mayo making the same request. I further requested that he write to Dr. Knopman who heads up the Mayo Neurology Department. I knew that he was a friend of Dr. Knopman.
I waited two weeks and then called Dr. Stein’s office. I wanted to make sure that he had responded to my request inasmuch as I had not heard from him. His nurse called back in a few minutes to advise me that nothing had been done. She had been on vacation and that her temporary replacement had not brought my letter to Dr. Stein’s attention. I felt angry, crushed and devastated. I was afraid that the selections had by that time, already been made. Unfortunately, when I heard this news, my response to Dr. Stein’s office was very emotional and not very understanding. Later that day the nurse called back. She told me that I should not “fret”, that they had Faxed the requested letters down to Mayo that day and that Dr. Stein called and spoke directly to Dr. Knopman. She said they could not promise anything but that I should immediately change Mom’s daily vitamin E dosage to conform to the Mayo desired amount for participants in the vaccine trial. This I did immediately.
We are now in the waiting period. Yesterday I got a letter from Mayo that I was almost afraid to open. It turned out to be, only an invitation to Mayo's annual Alzheimer's Disease program for Family's and Caregivers.
This vaccine trial presents a faint light at the end of an otherwise long dark tunnel.
Mom needs your prayers towards getting her into this very important trial. Mom not only needs your prayers for this particular purpose, but also for restraint on the progress of the disease. This year has not been a good year for Mom from a memory and a vocabulary standpoint.
Mom and I have however, had a busy summer and early fall with many fun social activities. We attended the Association of Firearms Examiners conference at Newport Beach, CA during July. The past two months have been very busy ones. Starting off, we went to the Minnesota State Fair in St. Paul. Betty joined us for this annual activity. Mom also attended the Ridgeland, WI so called “World Fair” and had a good time visiting with old friends and neighbors. Mom and I attended a Minnesota state forensic conference (MDIAI) at Hinckley, MN at the Grand Casino Hotel. (September 19-21) This is actually a very fine hotel with a very responsive staff. We probably ate more than we should at their many great buffets. I took Mom with me to an opening meeting of the conference. I had thought that we could then slip out before Mom would become bored. Actually, we stayed for the rest of the morning as Mom wanted to listen to the presentations. On the weekend, after the conference we visited the Hinckley “Fire Museum” on the “Great Hinckley Fire”. Would you believe the firestorm had flames over four miles high (tornado within a fire) and could be seen in Des Moines, Iowa. Large forest fires nationwide are now rated and compared to the “Great Hinckley Fire.” We also looked up one of Mom’s old school buddies (John Sanford) who was living nearby in Mora, MN. Mom and I had a nice time and spent the afternoon with John and his wife. We later also spent a long weekend in Bloomer WI for Mom’s 55th year Colfax High School class reunion. One of Mom's classmates (Gladys) who lives close to us, rode down and back with us. Gladys is one of Mom’s really great friends. We had a laughing good time the entire long weekend. The meals at the nearby Ruby’s Roadhouse were good but unfortunately abundant. A week later we flew to Tucson, AZ (October 3-5) for another forensic conference. (International Association of Blood Stain Pattern Analysts.) Again, while I was prepared to skip out of the meetings early for Mom's sake, Mom was the one that wanted to stay. I ended up covering Mom's eyes whenever they would show a gory crime scene. Mom likes the people in this particular group as she has gotten to know them over the years. I think that she feels comfortable with them and always has a good time. We also had a great view of the nearby mountains from our hotel room window. The sunrises were great! Many of these friends know of Mom’s Alzheimer's Disease and do not ask or make dumb comments.
Photo Notes - October Letter above: The photo of June and I was taken at Newport Beach, CA in July 2001, during the conference of the Association of Firearms Examiners. The second picture of June was taken in August 2001 at our home after receiving flowers from our son David for our 49th anniversary.
(The letter below was the last letter to the children in 2001. This letter to the children, outlines the condition of June their mother after four (4) years of this cruel disease, and portrays my temporary level of extreme frustration, anger, hopelessness and despair.)
10 December 2001
TO: Dave, Dan, Sue and Julie
When I sent you the October update on Mom, I covered in detail, my efforts to get Mom into the Mayo Clinics Alzheimer Vaccine trials. I mentioned that this opportunity represented a faint light at the end of an otherwise long dark tunnel. This seemed to me to be our only chance of saving Mom.
That light has now gone out!
All of our efforts, and our prayers to get Mom into the vaccine trials have proven to be futile.
Because of the long time since my formal letter request of 30 August and Dr. Stein’s letters and my phone calls of mid September, I spent 2 days calling Mayo (December 5th and 6th) and getting a run around. Finally on December 7th in the PM, I received a return call and message on the recorder.
Essentially the phone call (Chris in the Alzheimer's Disease Research Department) advised that they had received thousands of letters and phone calls inquiring about participation in the vaccine trials. They indicated that while their research patients (such as Mom) did have priority, the criteria were very strict and limiting. The message also indicated that the trial closed very quickly and that only a relatively few could be chosen. (Approx. 25.) The message also indicated that they had only three days in which to review records and make a selection.
Today I was finally able to talk with Chris. I wanted to know what criteria caused Mom’s elimination. What I found out was rather disconcerting and depressing. She could not come up with any item that caused Mom to be ruled out. She finally blurted out that they had only three days to review many records and they just could not review them all. She then said first come first served. (I frankly do not see how anyone could have been ahead of me. I made the formal request the very next day after this hit the news.). I asked her when the trials were closed. She indicated near the end of October. Mayo then let us sit for almost two months without saying anything. I probably would not have received any news if I had not start making phone calls. I received no response to my two letters of 20 July and 30 August. My first letter was actually only a shot in the dark asking about any trials. That letter request was actually sent over a month before the vaccine trial news hit the news media/papers.
The day I finally got the message from Mayo on the recorder, I was in the bedroom and had just finished listening to the recording when Mom walked in. She immediately noticed the tears in my eyes and wanted to know what was wrong. For a while I could not even talk. Then I explained that we did not get into the Alzheimer's Disease vaccine trials at Mayo. When I should have been consoling Mom, she was consoling me. She said to me “Its all right, I will be okay.” Well, Mom will not be okay and it is not all right. There have been numerous small and sad changes in Mom over the past almost 4 years as she has been pursued by this relentless disease.
(Editorial Note: The vaccine (immunological) trials turned out to be a total failure. The trials were started with great expectations because the previous animal trials were said to have "shown "startling" and "dramatic" results. Mayo was one of 15 Alzheimer's research centers throughout the United States and Europe that were involved in this trial. (360 patients) Shortly after the beginning of the trial, (January 2002) some participants developed an inflammation of the brain as result of the vaccine and the trials were immediately halted. (The vaccine was identified as Na-1792 developed by Elan Corp (Dublin) and Wyeth-Ayerst Laboratories their U.S. Partner.)
Mom has had a bad year health-wise. In March she had open-heart surgery with three bypasses. Her recovery seemed quick and good. I felt that the problem of her heart was behind us for at least several years. This was all shattered when during the weekend before Thanksgiving, Mom had the heart attack that resulted in angioplasty and the insertion of two stents. Now Mom has been body slammed with the bad news on the Mayo trials. In spite of all this, Mom for the most part, maintains a good and a cheerful attitude about her problems.
She apparently worries more about me than I realized. The other day after church, I noted a small pamphlet under her purse entitled “Grief Handling for a Man” or some similar title. I am not sure what she intended to do with it - it was obviously intended for me - I have not seen it since.
(Editorial Note: June later left the pamphlet "Handling Grief as a Man" (Care Notes) out for me to find and read.)
However, even Mom gets down at times. During her last hospitalization for the heart attack she had a tearful episode in which she asked me – “Why are all these things happening to me.” That was a tough question and I could only come up with a poor, stumbling and inadequate answer involving the effect of Genes etc. etc. It certainly was not much of an answer. I would like an answer myself. We all sort of joke around about running away when the pressures of the world becomes too much for us. It is times like this that I would like to take Mom and run away to some kinder, gentler place. Unfortunately I do not know the way nor how I could find such a place. It is perhaps that nostalgic country of my mind where it is always 1995.
Frankly I am at the point where I no longer know what to do. I always thought that I had a roadmap to where we were going. I thought I knew just what we would do. I tried to find the best doctors and the best clinics. I kept on top of the research. Now I find that my maps and charts were all faulty and I have lost my compass and my way. I put my trust in the wrong people. The medical experts were not experts. Even the Mayo doctors had conflicting advice. I had hoped that God would be my navigator in finding a safe port for Mom. We seem however, to be drifting about aimlessly in unfriendly waters. I appear to have struck out. I feel like a General without an Army.
I am frustrated with the medical community. The medical community with all their great medical doctor specialists cannot even keep Mom comfortable as it relates to her lesser health problems. You may notice that Mom frequently applies finger pressure to the left side of her face because of uncomfortable stinging sensations in the sinus cavities. (It is not a sinus infection.) This finger pressure gives her some relief. The level of her lack of comfort varies day by day. She tells me however that it bothers her most of the time. In addition to her regular doctor, she has been examined and tested by no less than 4 different EENT medical doctor specialists. The only thing that any one of them have come up with, is a big bill. Not one could come up with any solution to the problem. The solution to this problem would greatly enhance Mom's quality of life. It seems to me that this should be a rather simple health problem to solve. It seems nowadays, that if a problem does not fit the specialists daily routine of cases, they do not have a clue. If they cannot solve the relatively simple problems, how can I expect much help on the more complex ones?
(Editorial Note: The University of MN Oral-Facial Pain Clinic finally came up with the answer later in 2004. It was the Aricept medication June was taking for the Alzheimer's symptoms. We discontinued the Aricept which did not appear to be doing anything for her Alzheimer's symptoms at that time, and immediately the pains went away forever. This was not a side affect listed by the manufacturer or anyone else!)
I am also frustrated with God. We have had many people praying for Mom’s Alzheimer's problems over the past few years and many prayers have been made recently in regard to the vaccine trials. Almost a year ago I joined the Christian Broadcasting Network (Pat Robertson) and solicited their prayers in Mom’s behalf. I have even requested prayers for Mom from the young lady (and her family) that we are helping to support in Kenya, Africa. I have requested prayers from the Billy Graham Evangelical organization. Our church, Redeemer Lutheran, has been very good. Pastor Harley has prayed with us in our home at least once a year on or around Mom’s birthday - every year since the time of her diagnosis. Harley has even accommodated my requests to anoint Mom's head with oil during the prayers. This I based on Biblical references to the added healing powers of such procedures. It appears that the prayers have largely gone unanswered. I can see in looking back at my life, why God might not want to do me any favors (In this regard, I try not to pollute the request and ask for anything for myself), but I can not understand the results as it relates to Mom – she is a person as close to Saint and anyone I know! If I sound bitter it is because I am bitter!
We are probably now in the 9th inning. Someone who has the ear of God, - (It is obvious that I do not.!) - needs to step up to the plate before it is too late.
Editorial Notes: This letter was written at year end during a very low point in my life. My anger with God eventually changed and was replaced with a feeling of gratitude for the series of events that later demonstrated God's love and how he was working to bring about good out of evil. My failure to get June into what appeared to be the most promising of clinical trials was a crushing blow at year end. This had followed a year of very serious additional health problems that June had already weathered earlier in that year. (June had open heart surgery and a triple bypass operation in March and later heart attack that fall with a stent emplacement.) In spite of all of these problems that probably would have sidelined most anyone else for the year, June was still able to have a very full social and travel life during most of the year. It was my continuing goal to keep her life as active and interesting as possible in order to keep her mind off of the looming Alzheimer's storm clouds. When I look back at all the other events that we participated in during 2001, I am amazed that a lady in her 4th year of Alzheimer's, with all of her associated other serious health problems, was also able to do all the travel and social events that she actively participated in. No wonder this lady made my life an adventure...she was a lady who always had her "hat on ready to go." and all of the while, June was sporting a radiant smile.
June and Stan’s travel Log for 2001
2001: February 20-25th – Seattle, WA – Hilton Seattle Hotel, – American Academy of Forensic Sciences Conference. (A side trip was made to the Snoqualmie Falls Wine Country.)
2001: July 10-15th – Newport Beach, CA – Newport Beach Marriott Hotel – Association of Firearms and Tool Mark Examiners conferences.
2001: - September 19-21st – Hinkley, MN – Grand Casino Hotel ,MN Division of the International Association for Identification conferences.
2001: September 28-30th - Colfax, WI – Bloomer Inn/Jake’s Hwy 25 Luncheon – June’s 1945 Colfax Class Reunion.
2001: October 2-7th – Tucson, AZ – Hilton Tucson East Hotel - International Association of Blood Stain Pattern Analysts conferences
2001: October 16-22nd - Rice Lake, WI. June visiting her sister Betty and Lyndell..
2001: November 4-11th – Raleigh/Cary, NC – Visit daughter Susan and grandson Daniel over June’s birthday.
Note: I recalled later after the Seattle trip how June would get so very tired walking up some of Seattle's very hilly and steep sidewalks...these were symptoms of her later heart problems. I
Photo Notes December 2001: The top photo of June was taken at Cary, NC in November 2001, during our visit with our daughter Susan and grandson Daniel. The center photo of June with her birthday cake, was also taken at our daughter Susan's Home in Cary, NC. June and I spent a few days in Cary, NC over June's 74th Birthday. The bottom photo of June and friends was taken at the reunion luncheon for the Class of 1946 at the White-Tail Country Club in Colfax, WI, in late September 2001.
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: