Letters to the Children - June's Alzheimer's - 5th Year - February - April - May 2001
- Published on Friday, 21 May 2010 19:53
- Written by Stanton O. Berg
June first noted her short term memory problems in 1997 and discussed them with her doctor of Geriatrics during her annual physical examination in December 1997. He told June what she was experiencing was not normal for her age. He made and appointment for June to have a series of tests at the University of Minnesota.
The University report in late January of 1998 indicated a diagnosis of:
"Early Stage Alzheimer's...fairly severe recent memory impairment...grossly intact intellectual and executive abilities...remains fairly functinal and to some extent is able to compensate for the memory problems..."
A later examination at Mayo Clinic verified the University diagnosis and added the findings of an MRI that indicated "Atrophy of Hippocampus" which is the memory control center that processes all new memories...I recalled vividly the comments of one of the ladies at Mayo who was counseling June and I...she said we normally could expect a few years of good quality of life before the Alzheimer's would take over! I determined to make the most of those years!
While our life would never be the same. June managed to keep the disease at bay and remained in early stages of the disease through the year 2003. June did very well during the period of years from 1998-2003. We celebrated a happy 50th wedding anniversary in 2002
Our strategy was not to dwell on June's sickness and instead we decided to make the best of June's remaining good years...We were very active and did the many things we had previously put off doing...we made out our "Bucket List"...we did extensive traveling including a final goodbye trip to London during their Sherlock Holmes Festival in 1999. We literally completed all items on our "Bucket" list...in looking back I have no regrets other than June's diagnosis of Alzheimer's...we did not spend out time with daily reminder's of June's sickenss by involving our selves in such things as Memory Cafe's and support groups...there was plenty of time for that later when the disease took charge.
This series of letters by year of June's journey through Alzheimer's show how well June and I did during that time plus some disapointments and frustrations from my standpoint in the failures of the medical establishment... and goals that I was trying to achieve in later years, including my failed efforts to get June into some Vaccine trials in year 5...this turned out to be a blessing in disguise...
2 February 2001
TO: Dave, Dan, Sue and Julie:
This is just a short update on Mom's recent visit to the Mayo Clinic.
After some changes in scheduling due to problems with the availability of doctors, we finally completed Mom’s first visit to Mayo on Tuesday morning January 30th. Mom and I went to Rochester on Monday afternoon and stayed overnight at the nearby Hilton Hotel. The Hilton is connected by the skyway system to the Mayo Clinic. Mom's appointment was on Tuesday morning at 8:50 AM. It was a good choice to go down the day before in view of the resulting weather. Monday evening was the ice storm and we would never have made it on time the next morning if we had elected to drive down the same morning.
Mom was very concerned and apprehensive Prior to the appointment and the examination.
Mom's examination took from 9:00 AM until 12:30 PM. The last half hour was spent getting blood samples. Almost the entire time from 9:00 AM until Noon was spent with the Mayo doctors either answering questions or having physical examinations. Mom did have a half hour break when the doctor consulted with another doctor on his findings and then the two doctors had a joint conference with both of us.
The initial examination and the questioning was very hard on Mom. They were trying to determine the extent of memory loss and cognitive ability. Mom would look at me for help and the doctor would say, “don’t look at your husband.” The questioning became too intense and I felt I had to intervene. I requested that the Doctor back off and take it easy as I could see Mom’s hands were actually trembling. My heart went out to Mom. The doctor then gave us a short break. When the doctor left us alone, Mom said: “I am sorry I came down here.” - “I would rather be dead.” I tried to reassure Mom that this was just one of the stages or steps that they and we had to go through in order for them to evaluate her condition. After the doctor returned I told him what Mom had said. He immediately changed his general demeanor and things went much better. I would have thought that professionals in this area of medicine would be more understanding of the stress that they are putting their patients through. It was not a very impressive Mayo Clinic performance.
In one of the tests of Mom’s memory, the doctor asked Mom how long we had been married. Mom couldn’t remember exactly and said over 40 years and then added the comment, “and we are happy as a lark.” I am sure you have all heard her use that expression (happy as a lark) many times before. It is one of Mom's favorites.
Editorial Notes: June was not too far off on her estimate of the length of our marriage. At the time, we had been married a little over 48 years.
I had earlier indicated to Mayo that our purpose in being there was that I wanted them to manage Mom's Alzheimer's Disease care while her other medical problems would be handled by Dr. Stein. I also indicated that we were interested in being involved in their Alzheimer's Disease research.
They indicated that her present treatment with drugs and vitamins appeared appropriate. (Aricept, Ibuprofen, Vitamin E and Estrogen.) I was glad to hear that as they also noted that most of the present treatment was based on the Internet research data provided to Dr. Stein.
Editorial Notes: This is a good example of how almost all the early wisdom about Alzheimer's Disease was incorrect or wrong. Aricept was later found to have only a slight value and in June's case it was actually harmful to her. The latter three items have since all been removed from standard treatment and one of these have since also been considered harmful. I recall hearing a doctor give a speech several years ago in which he observed that 50% of the conventional wisdom of the earlier years was incorrect. He predicted that in coming years there would be point where we would look back and decide that 50% of what we are doing now is wrong!
Mom has a follow up Mayo visit on Monday and Tuesday March 5th and 6th. Again, we plan to go down a day early (Sunday) and stay over for 2 nights at the Hilton. It will be a busy 2 days. Monday morning will be an MRI, followed by a long visit with a psychologist with a psychological examination. The next morning we will visit with a nurse in the research department in connection with involving Mom in Mayo Alzheimer's Disease research. That will be followed by consultation with one of the "Senior Alzheimer's Disease doctors. Last of all will be another visit with the Mayo doctor doing her first exam described above. It will be a tough 2 days for Mom, particularly the long psychology visit. I am very hopeful that some very good things will come out of all of this.
On our way back home, Mom seemed happy and cheerful.
I don’t know what you all do by way of charitable contributions each year and it is probably none of my business. Just as a suggestion however, if you do make such contributions, please consider making contributions to the Alzheimer’s Association. The money received almost all goes into research projects. In 1999 I made a small contribution to the Alzheimer’s Association. In the year 2000, I increased that amount by several times and I intend to further increase it this year. If you are making contributions to other organizations, please consider the same for Alzheimer’s Association or perhaps making extra donations to the Alzheimer's Association as a way of helping Mom.
Photo Note: The photo above of June was taken at the forensic conference of the Association of Firearms Examiners during their meeting at the Marriott Hotel in Newport Beach, CA in July 2001.
26 April 2001
TO: Dave, Dan, Sue and Julie:
I have been rather delinquent in updating you on Mom’s 2nd Mayo Clinic Alzheimer's visit. Because of all the other serious turbulence in Mom’s medical condition, I am afraid that I have just let it slide.
The return visit to Mayo Clinic took place on Monday and Tuesday March 5th and 6th, .2001.
It was a busy two days for Mom. The first thing on Monday morning was a skull MRI. The entire Monday afternoon was spent in the Department of Psychiatry and Psychology, with Dr. Trenerry and his technicians. This was a very tense time for Mom. It was broken into two long sessions. Basically it was a testing of her memory, ability to follow instructions and other cognitive patterns. I felt so sorry for Mom because I knew how hard it would be for her. I later found out that she did not like the lady who did the testing so this then became an additional problem for her. At the end of the afternoon, Mom told me that this had been the "worst day" in her life. I assured her that the next day would be a much better day. Thankfully it was a much better day.
Editorial Notes: I am always puzzled by the personnel that we find in emotionally sensitive jobs such as the lady tester of Alzheimer's patients. If there was ever an area for careful selection of compatible people, this would be it. I think the problem results from the fact that many of the people working in these areas really do not understand the disease of Alzheimer's.
Tuesday morning we met with Nurse May Femrite who discussed various aspects of Alzheimer’s, and attempted to provide some education to both of us. She discussed the diagnosis symptoms and management of symptoms. She was a nice enough person but I can’t say that I learned much from the session. She also talked with me about caregiver problems. She recommended sharing the diagnosis with other family members and with friends so they would be in position to lend support.
Later in the morning we visited with Dr. Yonas E. Geda. He showed us the MRI on a computer and actually pointed out the area of the brain that is responsible for short-term memory. There was a visual void in part of this area that could be readily seen. He also pointed out some other abnormalities. I was concerned that this would be overwhelming for Mom but she seemed to handle it very well. Mom was seemed interested in it all. Mom asked Dr. Geda what could be done about the results. Unfortunately he was not able to offer any good news about what we saw on the MRI. In spite of his Indian dialect, he seemed to have a good bedside manner and Mom liked him. Before leaving him, Mom told him what a nice man he was.
The next visit was with Dr. David Knopman who was the overall supervisor of the Alzheimer’s department. Before seeing Dr. Knopman, Dr. Geda told us how Dr. Knopman previously was the head of the Neurology department at the U. of Minnesota. Dr. Geda told us that Mayo was able to attract him to the Alzheimer’s section at Mayo and referred to this as the landing of a “big fish”. Mom also liked Dr. Knopman. He talked about dispensing with the Ibuprofen in Mom’s treatment, as further research did not find any value in this part of the treatment. He did talk about increasing Mom’s Aricept from the present 10 mgs. to 12.5 or 15 mgs per day and he would so advise Dr. Stein. Unfortunately, because of the rapid onset of Mom’s heart problems, this recommendation has been put on hold until the heart treatment is completed. He also recommended enrollment of Mom in their Alzheimer research center.
This enrollment was next completed with the usual numerous forms. The lady handling this enrollment (Sheryl) was a sensitive and considerate person that Mom liked.
The 2nd day did serve to put a more pleasant spin on what started out on the first day to be a very tense and disturbing time for Mom.
We drove home on Tuesday afternoon. We had spent Sunday and Monday nights at a nearby Hilton Hotel as a matter of convenience.
Mom seemed relatively at ease on the return trip. Apparently this concentrated two days did cause her to think about our future. When we returned home, Mom suddenly blurted out – “I thought that we would always be together. “ I assured her that that nothing had changed and that we would always be together. Mom then said to me..."I was so afraid.". That made me sad to think that Mom had such feelings and worries I also wondered what conversations by the Mayo Staff had caused her such concern. Some of their conversations with Mom were alone.
Stan'sl Note: This promise I made to June would come back to haunt me later with much guilt on March 16th, 2005 when June went into an Alzheimer's facility for her care. I feel the guilt pangs to this day. At the time of my promise to June in March 2001, I fully intended to care for June for all of her or my life. I had no understanding of the horrors and the demands of this disease in the late stages.
I have seen some rather sobering information in the April 23rd 2001 issue of Time Magazine. A short item reported on a recent Canadian study. This study revealed that the course of Alzheimer’s to termination after first diagnosed was found to average 3 years. This was said to be only 50% of what the average was originally thought to be. The Alzheimer's Association has indicated that the range is from 2 years to 20 years with the average being 8 years from time of diagnosis. As you know, Mom was diagnosed with AD in early January of 1998, three plus years ago. Hopefully, Mom’s specialized treatment will result in her far surpassing this average. In fact, I think she was done well in holding her own with rather mild changes over the last three years. Maybe it is my imagination, but it does seem like the heart trauma had a negative effect on the AD. I only hope and pray that there will be an early breakthrough in AD research and treatment.
Editorial Notes: Presently (2010) the 8 year average time for the course of Alzheimer's disease from time of diagnosis to termination seems to be the prevailing one. I wonder where the data for the Canadian short span came from. June lived almost 12 years. President Reagan lived 10 years. My close friend's wife is now going on 14 years. Charlton Heston lived 5 years.
It was While we were at Mayo, that some of Mom's heart symptoms started showing up. I really did not recognize them at the time. I later remembered that we had a long skyway walk every morning and evening. Mom would ask me to slow down at times, because she was winded. I remember at the time thinking that we were really not walking that fast. It was shortly thereafter that she started complaining of chest discomfort when she first arose in the morning. It would go away in 5 minutes. The first visit with Dr. Stein in regard to this problem was negative. Her EKG was normal and her blood pressure was normal. The follow up was a stress test at Abbot Northwestern on 20 March. This was followed by an Angiogram on the 21st (The Angiogram found three areas of blockage – one was a 90% block, one a 70 % block and one a 30 % block) Mom's open-heart surgery with a triple by-pass was scheduled and took place on the 22nd.of March 2001. That week ushered in one of the most stressful and fearful times in my life. At the time I did not know how this little lady could survive such a drastic surgery. But survive Mom did and with a remarkably fast recovery. The surgeon's brutally frank assessment and outline of the risks involved on the evening before the surgery, did nothing to raise my spirits or give me confidence in the outcome. It made me angry that the doctor would conduct this mind numbing discussion in June's presence, all the while knowing that June was going into her fourth year of Alzheimer's.
I want to extend my and Mom’s appreciation to those of you who were able to make it down to the hospital's pre-operation room early on the morning of Mom's open heart surgery. This was the time that the staff was getting Mom ready for the operation. It was at a very early hour. I know that Mom appreciated it. I am sure that this time just before the Mom's operation was a very lonely time for her. Quite frankly, it was a lonely time for both of us. Your appearance brightened everything!
Editorial Notes: June's triple bypass surgery was done on March 22nd 2001 at Abbott Northwestern Hospital by Dr. David P. Blake... (The operation consists of a long center of chest incision that opens the chest cavity. The heart is stopped and the blood is pumped to and through the body by a machine. The by pass veins are harvested from the leg and used to bypass the clogged veins or arteries of the heart. A temporary breathing tube is inserted in the throat/lungs. The heart is restarted and the chest opening is sutured closed.) ...June was released from the hospital on the 29th of March 2001.
Shortly after June's heart bypass surgery, one of June's surgeons held a family conference in the intensive care unit. The doctor indicated that the surgery had gone well and without complications. The doctor also indicated he did not think June's Alzheimer's status would be adversely affected. (This Alzheimer's comment was our granddaughter Gretchen's first notice of her Grandma June's Alzheimer's - it came as a shock to her) The doctor further indicated that June's oxygen levels were good and if the next oxygen test continued to show the oxygen levels to be high, they would be able to remove the breathing tube from June's throat and lungs. June who could not talk because of this tube, on hearing this welcome good news, signaled her approval with a "thumbs up" gesture
A family member had suggested to one of June's sisters that she stay with June and I at our home and assist us for 1 week or so following June's release from the hospital. The sister however declined, indicating that she had too many conflicts in her schedule at the time. I was fearful and had little confidence in my own ability to properly care for June following such a major operation. My cooking ability consisted of what I could microwave or put in a toaster. Our children all had job reponsibilities. However, every thing went just fine. We devised a method for my assisting June in transferring into an out of chairs, the bed etc., until the large-long chest incision wound could properly heal with the least amount of strain on that area. (I had June place her hands clasped behind and around my neck so that I could then lift her into an upright position with a minimum amount of stress on the chest wound. A visiting nurse came to our home three times a week to check on and re-dress the wound. I purchased many TV dinners and instant oatmeal packets. An anonymous member of our church (Redeemer Lutheran) donated several home prepared meals. The recovery was remarkably fast and with no complications. God may have been directing from behind the scenes! For several weeks, June continued with her outpatient cardiac exercise therapy at Unity Hospital near our home. The purpose of this therapy was the building up and restoring of June's strength.
Photo notes: All three photos above were taken at the Abbott Northwester Hospital in March 2001 after June's Heart Bypass surgery. The first two pictures show June in her room during the first few days following her surgery. The bottom picture shows a happy June being released from the Hospital on March 29th, 2001.
21 May 2001
TO: Dave, Dan, Sue and Julie:
I wanted to update you all on the results of the change in Mom’s medication. Dr. Stein increased the Aricept that Mom is taking from 10 mgs. a day to 15 mgs. a day. This was done at the suggestion of the Mayo Clinic. The change was made on the 4th of May. She had some initial mild diarrhea that seems to have largely abated. I really do not know if this change has resulted in some small improvement in Mom’s Alzheimer's Disease. Certainly it has not changed the short-term memory but it may have helped in other areas. It is difficult to really know. It may be just my imagination or perhaps I just want so much for Mom to be better that in my mind that is how she appears.
I have also prepared an informational letter for selected relatives and friends in which I have attempted to advise them of Mom’s Alzheimer's Disease and how it has and is affecting her. Mom has not seen the letter. I have already sent the letter out. (1 May 2001) I have mixed feelings about doing this. Neither Mom nor I are comfortable with a general or a wide spread dissemination of her Alzheimer's Disease information. It is intended and I hope it will, result in, the recipients providing Mom with prayers, friendship, love support and above all understanding. I guess one never knows how the individuals will use the information. I just hope that their use of it will be on the positive side and that I will not be sorry that I sent it out. Unfortunately, there is sometimes a tendency for people to turn away from things that make them uncomfortable.
Editorial Note: A copy of the above referenced letter can be seen on June's web site by clicking on this link:
There is so much ignorance of Alzheimer's Disease and so many flippant, ill-advised and cruel comments made by persons uninformed about Alzheimer's Disease and it's consequences. I find myself angry many times with people who are otherwise my friends. I have found myself in this position more than a few times while having lunch with friends. Recently at a stag luncheon of retired people from State Farm, this matter came up. One of my former employees (a retired claim representative) has had Alzheimer's Disease now for the past few years. He frequently attended the luncheons for a time but has now dropped out. One of his friends was telling of the attempts he was making to encourage him to return to the luncheons and what his reactions were. One individual in the group seemed to be find it all very comical. This caused me to become very angry with him and have an urge for violence!. I remarked to another person sitting across from me that it really was not funny but rather it was very sad. He responded that he had always found that people with Alzheimer's Disease seemed to be happy. I had an immediate surge of anger and wonder at the level of ignorance being displayed. I tried to control my anger and spent some time trying to educate him out of his ignorance. In the process, I was probably not too diplomatic in letting him know that he really did not have a clue.
Editorial Note: A typical example of the thoughtless cruel jokes concerning Alzheimer's is a "Good News - Bad News" joke. The joke involves a person consulting with his doctor who tells him: "I have good news and bad news for you. The bad news is that you have Alzheimer's. The good news is that you will not remember it!
I hope that all of you have an appreciation for what Mom is going through. You all see her infrequently (some more infrequent than others) and for rather short periods of time. I know that during those visits it may all seem like “fun and games”. In spite of Mom doing a great job of “putting it out of my mind”, there are periods of time when even she is overwhelmed by it all. At those times she will cry and repeat, “I don’t want to be like this.” All I can do is tell Mom that I love her and to hold her until this emotional period passes - all the while my mind is flooded with thoughts of extreme sadness, frustration, and helplessness.
Mom is still going to her weekly Cardiac Rehab at Unity Hospital here in Fridley. She goes three days a week (Monday, Wednesday and Friday) for an hour. She appears to be making a good recovery and the rehab is restoring her original strength. He heart surgeon has released her for all activities following her last visit in the first week of May. He said unless something unforeseen comes up, she need not come back. She does have a swelling in her left ankle and foot that changes in relationship to how much she is on her feet. The doctors recommend elevating the left leg if possible. This is a condition that may be permanent in view of the removal of blood vessels in that leg at four locations for the bypass surgery.
On the plus side, Mom seems to genuinely enjoy our various social activities and functions. As you are all well aware, we do much traveling to forensic science conferences. When not traveling, we try to do enough things so that Mom does not have much time to reflect on subjects that make her unhappy. Every morning we meet with friends at CUB for coffee and rolls and more times than not, we go out for lunch. Sometimes in the afternoon we find excuses to go out for coffee. Friday nights are always Legion nights for dinner. Sundays are usually busy with church followed by lunch at "Perkins". Saturday mornings we have breakfast with friends at "Baker's Square". Saturday afternoons we attend a Blue Grass Jam session followed by dinner with friends. We do not watch much TV, except in the evenings. Our best TV night is Saturday when we lay on the bed and watch the “Grand Ole Opry”, The "Statler Brothers" and the "Gaither Gospel Hour". I guess you could say that on Saturday nights we return to our "roots".
Bud and Lenore were up last week and stayed with us for three days. It was a fun time for Mom and for all of us.
Photo Note: The first photo above of June is process dated August 24, 2001. It may have been taken in July at the forensic meeting in Newport Beach, CA. the bottom photo is of June with two of her neighbor friends. Photo taken in June-July 2001.
After an almost 12 year journey into the shadows of Alzheimer's, early one morning in late October 2008, an exhausted June felt God's gentle touch on her shoulder and heard the words: "Come Home June!" As June lay like a wounded soldier on a battlefield, it was God's Angels that ushered June into a Heavenly Kingdom to the sound of a chorus of Angels...and into June's new home, a "Mansion on the Hilltop", where there is no pain, nor illness nor tears...June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website in the drop down menu under the "In Memoriam" label - just Click on: