Letter to Relatives and Friends of June's Alzheimer's Diagnosis - May 2001
- Published on Friday, 23 May 2008 06:00
- Written by Stanton O. Berg
To: June's Friends and Relatives/Family:
June has a serious medical condition that most of you are not aware of.
In late January 1998, because of her concern with her memory, June went through a series of tests (neuropsychological evaluations) at the University of Minnesota. As you may have been aware, June frequently expressed concern over her memory. She had been in tears over it more than once. I had noticed it, but assured her that it was just normal and everyone had some problems with memory. I also thought that perhaps her concern just tended to magnify it in her mind.
Unfortunately, the report from the University confirmed our worst fears. (1/26/98.) It gave the results of a series of tests. They concluded, that while the “neuro-psychological evaluation revealed grossly intact intellectual and executive abilities,” they also listed some abnormal findings. The most troubling one was: “fairly severe recent memory impairment.” They then went on to conclude: “This pattern of deficits is most consistent with early stage Alzheimer’s Disease.” June’s regular doctor who specializes in Geriatrics and Internal Medicine passed on the sad news to us. June initially seemed stunned and depressed at the news, however, after a short time that same day, she started cracking jokes with the doctor. She now rarely brings up the subject.
Shortly after the diagnosis, I notified each of the children about her condition. I did not at that time wish to advise anyone else and requested the children not to advise anyone of June’s condition. (I understand that she may have inadvertently “let the cat out of the bag” in conversations with one of her sisters.) I had the fear that people would treat her differently if they knew of her condition. I wanted her to enjoy a relatively normal life for as long as possible. It has been suggested to me however, that the value of revealing this condition and the support and understanding that she would receive might far outweigh my fears. I have finally decided that perhaps this is the better course of action, hence this letter. I do not intend to make a general announcement or send out an APB, but I do want to notify some of her relatives and some of her friends. Although it is now over three years since the initial diagnosis, I still find that I cannot discuss this matter rationally and therefore think it is best to do this in writing. I just recently tried the verbal approach with one of you and ended up so emotional that I could not continue.
Editorial Note: Experience and studies however reveal that following notice of Alzheimer's diagnosis, old friends will start to slowly disappear. See my study and essay on disappearance of friends as an Alzheimer's timeline! See the below link:
Maureen Reagan (President Reagan’s daughter) in testifying before a congressional sub-committee described Alzheimer’s disease as – “a thief that sneaks into the brain and robs its victims of so much of what is precious about life – our memories and our experiences, ultimately life itself.”
June seems to be handling all of this very well. Maybe she is concealing much of her inner feelings. Most of the time she seems cheerful and upbeat. One day however, she appeared to be in a down mood. When I asked her what was wrong, she said that she felt down because she was thinking of the future and that she would probably end up in a nursing home. A tearful discussion followed that statement. I have tried to impress on her that we are both in this together and that I will do my best to help her fight this thing. June’s condition is on my mind many times each day. It is always in the back of my mind waiting to spring out at the slightest triggering thought. I know it is important to be up beat for June’s sake but it really requires my closest attention so that I don’t get off track. She has a heavy enough burden as it is.
I think June handles herself well when visiting with friends. I don't know if or how many of you suspect anything is wrong. Her background of well-instilled and habitual social graces seems to frequently carry the day. She is to some respect, operating on automatic pilot in many situations. She will frequently ask, "So what is new with you." There have been times when she has done that more than once during a conversation. I try to backstop her when I can. I try to be close at hand when she is telling about an experience so that if she is confused about a word, name or date, I can slip it in. I think it appears that I am perhaps just "an interfering or butting-in" husband rather than her assistant. Of course I am not always at hand, especially when she is out to lunch with a friend etc.
Christmas is always to hard time for June. That is in spite of the fact that June loves Christmas. She commented that she wished Christmas came twice a year. It is however a time that she is reduced to tears more than once because she does not think that she is getting things done right and fast enough or that she does not participate like she wants to etc. I am always glad when Christmas is over. I certainly appreciate that our daughter Julie has taken over hosting the event for the family as well as hosting Thanksgiving.
My evaluation of how she is doing currently symptom wise is a day-by-day emotional roller coaster. Some days, I am depressed with indications that things are sliding backwards. Other days I am heartened by reverse indications. Her short-term memory has been bad for some period of time. At times she will surprise me with some short-term memory items that I would not think she would remember.
Overall her long-term memory however, seems to be good and sometimes it is better than mine. She frequently can recall happenings of many years ago that I need help in refreshing my memory. However there does appear to have been some recent slippage in this area also. I know that the day will come when I will no longer be able to turn to her and say “honey, remember the time when…”
Most recently she seems to have some difficulty with her vocabulary and in finding certain words she wants to express herself. This can be very frustrating for her. There are times that I feel June is desperately treading water in this area.
June does best in all areas when she is not under stress. I do my best to keep stress out of her life. It is my thought that she is still in the early stages of AD. There is no question but that we are in a race that involves working hard to slow down the progress of the disease. Except as indicated above, June is fully functional in every respect.
Her recent and unexpected heart problem with the resulting open-heart surgery was a complicating factor. I have been told that people with open-heart surgery frequently have a resulting negative impact on memory. I really cannot see a significant difference before and after her surgery. She is making an excellent recovery from her heart surgery.
The information I have received from various Internet medical sources suggests a period of from 3 years to 20 years as a time span of Alzheimer’s from the time of origin to the termination. Various studies have indicated the average to be anywhere from 3 to 8 years. She probably had the condition for at least 1 year before the diagnosis, based on looking back of the start of the symptoms and her own expressed fears. While much of the information I have found is upbeat in the area of finding a cure for Alzheimer's, time is not on the side of the present victims of this disease.
June is presently taking Aricept, which as far as I can determine is the best drug of several drugs presently available. She is also on Estrogen and large doses of vitamin E. There is of course no cure. The best we can hope for is that the treatment will result in a slowing down of the changes. Originally a specialist in Geriatrics and Internal Medicine was caring for June. Around the first of the year, I was successful in getting June into The Mayo Clinic. The Mayo Clinic is one of a few Alzheimer’s research centers in the United States. She has a few doctors involved with her treatment at Mayo. The doctor supervising her treatment is the former head of the U of Minnesota Neurology Department. Mayo recruited him for their Alzheimer’s unit about a year ago.
Editorial Note: As so often is the case, prevailing opinions and judgements later turn out to be wrong. Aricept was later determined to be of help to only 50% of AD victims and to those, the benefits were at best only very modest. Estrogen and Vitamin E was also determined to be of no value and might even be harmful so they were discontinued. The Aricept was found to have a side affect for June that caused distressing facial pains. Only after the services of 3 EENT specialists and the University Pain Clinic were we able to determine that the Aricept was the cause. When Aricpet was removed, the pains went away forever...actually June's AD seemed be unaltered as a result of the Aricept discontinuance. This was as a large UK study had already suggested.
The days of testing and evaluation at Mayo were very hard on her emotionally. She is also enrolled in the Mayo Clinic Alzheimer’s research department. I am hopeful that this will enable her to be on the leading edge of new treatment. Unfortunately, all the good news about the new research that is taking place is said to be about 5 years or more away from availability for patients. For an Alzheimer’s patient that is a long time.
I know that you will not all agree with this, but I do not feel that unfortunate things like June’s AD is a part of God's master plan as some people would have me believe. I don't think that all the bad things that happen in the World happen because God has a master plan and that somewhere something good that will evolve from all bad things in accordance with that plan. Bad things happen. Some bad things happen because we have made bad choices during our life. Other bad things evolve or result from our genetics and our environment. Some bad things happen because bad people impact our lives. Things happen. My bottom line is that God did not have anything to do with June getting AD. Certainly he could alter or change events that are taking place if he chose to do so. Surely God is there to give us the courage and to help us get through all of this and other problems. I found some support for this viewpoint sometime ago while listening to the Pastor of the Calvary Episcopal Church in Rochester. I was attending one of Mayo Clinic's Alzheimer Conferences for Families that was held in Rochester. The Pastor was Nicklas A. Mezacapa. He gave the keynote address. I remembered very clearly his indicating that God did not bring this all about - it was something that just happened. I recently visited with him on the phone. I wanted to make sure that I heard him right. After discussing it for a time, he assured me that we were both on the same "Theological Page". He also referred me to a book "When Bad Things Happen to Good People." Our local pastors at Redeemer Lutheran have also assured me that God was not behind June's terrible disease and is working to bring goodness out of all of this!
June does not mention her AD very often. Unfortunately, I cannot look at her without thinking about it. I still have trouble discussing it. She says that she tries to put it out of her mind. She seems to do relatively well at accomplishing this - or so it seems. Of course no one but June would ever know how well she puts it out of her mind. Some time ago as we were on our way to one of her class reunions in Colfax, we drove through North St. Paul on 694. June commented that her life had really changed. She had reference to how she in the past, would drive to North St. Paul (or anywhere else in the cities) on personal errands that she now does not feel comfortable doing. On another occasion she commented that she supposed that someday she would have to be placed in a nursing home. When we are out with friends and someone mentions AD or jokes about it, I cringe. June acts as if nothing happened and will ask a question or two and go on. I would think that at times it would be terrifying for her to contemplate life's path in the future.
Most of our days are happy days. However, those happy days are also punctuated by a hundred brief moments of sadness for me when little things take place that remind me of what is happening to June. We have since done a number of things June always wanted to do but we had never previously gotten around to do them. (Trip to Hawaii, trip to Branson and a final "Goodbye" visit with our friends the Bruce's, in England.) I suppose that such events could be said to be positive things coming out of all of this. In this regard, I have looked long and hard for something positive. Hopefully I have become a better person, and a more patient and caring person as a result. However, from my viewpoint, when I balance the scales of justice, they still look very heavy on the negative side.
Many of you have seen the little book that I prepared about June for her grandchildren. The real reason I did the book is primarily related to June’s Alzheimer’s disease. I had various motives in mind when I prepared the first edition for her birthday back in 1998. One motive was to provide (at least temporarily) a means for June to again remember, review or relive some of her personal books of memory that had been stolen from her mind’s library by this cruel disease. One more selfish motive is that this results in some form of therapy for me. The most important motive however, was to provide a means for June's grandchildren to see what a special kind of a person their grandmother really was before this relentless disease attacked her... So now you know the rest of the story!
If any of you have not seen her little book and would want a copy, I would be happy to send you one.
June very much needs your prayers, your friendship, your love, your support and very importantly, your understanding.
Photo Notes: The top photo of June was taken in San Francisco, February 1998 during a conference of the American Academy of Forensic Science. This was just a month after Junee was diagnosed with Alzheimer's. The 2nd photo was taken when June and I were in Maui, Hawaii a year ago in January 2000. We had just completed a helicopter ride around the island. The 3rd photo was taken at Abbott Northwestern Hospital after June's successful heart by-pass surgery in March of this year. This 4th or lower picture on the right above is the front cover of June's little book on her life - "Reminiscences of a Traveling Grandmother."
Book Note: This book" on June's life can be found on this website. The "little" book "Reminiscences of a Traveling Grandmother" and can be found on the top navigation strip under the label "June's Life" and appears on the drop down menu. The online 4th edition of the book is greatly expanded with many photographs added.
Final Note: On October 23rd, 2008 June passed away after almost eleven years of an exhausting battle with Alzheimer’s. June's last three years and 8 plus months were in an Alzheimer’s facility. Her last years were at the Alzheimer’s “Villa” of the Benedictine Health Care Center of Innsbruck, New Brighton, MN. See the funeral notice as published in the Minneapolis Star - Tribune. It is located on the top blue navigation strip under the label: “In Memoriam”. Click on: