Letters to the Children - June's Alzheimer's - 2d Year - October 1999
- Published on Monday, 17 May 2010 20:07
- Written by Stanton O. Berg
12 October 1999
TO: Dave, Dan, Sue and Julie
I think that I provided you each a copy of a letter that I sent to Dr. Stein on 25 August 1999 in regard to the "New Recommended Treatment" for AD that came out in a recent international meeting in Vancouver British Columbia. (Ninth International Congress of the International Psychogeriatric Association) Basically they were recommending a 4-point program. It appeared that Mom was on 3 of the 4 points outlined in the program. I requested that Dr. Stein consider adding the additional 4th point to Mom's treatment.
I did not exactly get an instant response. When I heard nothing by 5 October, I called and left a message for him. He called back late in the day but I was not here to take the call. A few days later his nurse called to advise that he had my letter on his desk and would be discussing it with me when he got the chance. She indicated that he had been very busy. She said that in the meantime, while the Doctor did not know if it would do any good, it would be okay to add a daily dosage (400 mg - 2 doses of 200 mg) of Ibuprofen to her diet as a part of her treatment. (This was the 4th point in the recommended treatment coming out of the Congress mentioned above. I hope this will be the right approach. Unfortunately Medicine is both and art and a science. I worry about the art part of the equation. With this addition, Mom will at least be on the latest recommended treatment for AD.
Editorial Notes: History now shows that I should have been more concerned about the science than the art. This recommendation turned out to be totally the wrong approach. Later studies released in 2009 indicate just a reverse affect. See article on June's website on Alzheimer's drugs: NSAID Pain Reliever's Raise Risk of Alzheimer's!
The medical profession can be very frustrating to say the least. Almost all the doctors are running late in about everything they do. They really have very little time for an individual patient. Usually they have just a few minutes during the office visit. They really seem to have little or no time to give any thought to the individual patient's treatment. I don't know when they spend time to get updated on new trends and if they do, when do they consider the application of the newer methods to their patients?. My impression is that almost everything that has been done in regard to Mom's treatment has required prodding along the way. I am sure that they feel they do not have the time for research and individual patient proactive thinking. For a specialty of Geriatrics and Internal Medicine, staying abreast the latest developments seems a necessity. Unfortunately, patients like Mom have no time to waste. It is unfortunate that one cannot mold the concern and the posture of the family doctors of the past into the doctors of modern medicine.
My efforts to get mom considered in new drug trials have so far been a total zero. My inquiries have gone unanswered and the doctors has been no help. The Alzheimer association keeps a list of current drug trials. Unfortunately by the time they post a potential trial, the information is so outdated that the trial selections have already been filled.
Mom is a participant in a cancer-screening clinic operated jointly by the University of Minnesota and the Virginia Piper Cancer Institute. Her first sets of screening exams were completed in May of this year. Everything was negative except for a Sigmoidoscopy exam. This exam detected the presence of polyps and divertitulosis. Dr. Stein immediately scheduled a follow-up Colonoscopy at the Gastrointestinal Diagnostic Center of Abbott Northwestern. This procedure was done a few days ago. This procedure resulted in a removal of a polyp. It was concluded that the Diverticulosis was not of significance. A follow-up Colonoscopy was suggested in 5 years. I think Mom thought that the worst part of the Colonoscopy was the preparation for it. No fresh fruit or vegetables the three days before. No solid foods the day before, only juices. A laxative (Fleet Phospho Soda) was taken the evening before and early the next morning. The laxative kept Mom making several trips to the bathroom. At least it appears that everything turned out okay.
In the area of the Alzheimer's Disease, Mom seems to be doing well overall. At least it appears that way to me. Maybe my being here daily does not allow my to evaluate properly on the longer term. There has probably been some slight slippage over the past year.
I notice that stress appears to be a big factor in causing confusion. It is my job to try to keep Mom stress free. Under stress, Mom sometimes does things that are not completely rational. Recently the city-state completed extensive reconstruction of highway 65 running through Fridley. One day after reopening the intersection (with changes) that Mom normally crosses to go to Julie's, the crossing was routed in a different lane. Mom crossed the intersection in what was designated the right turn lane. (Previously it was the proper lane to cross over.) When she saw her mistake she got so upset that she went to the Fridley Police Department and confessed her mistake. They told her that as long as there was no accident or other problems to just forget about it.
That was probably the first time in the history of the Fridley Police Department that anyone confessed to making a driving error after the fact. Is there a more honest and humble lady in all the world? I made the same mistake the first time I went over the intersection, I just didn't advertise it.
I have started taking over more of the driving when we go somewhere together. If she does not feel comfortable about driving to a certain location she will ask me to drive. A short time ago she had an appointment with her dermatologist to look at a small spot on her hip. The dermatologist was on Beam Avenue just off White Bear Avenue in Maplewood. She had gone there a few times before but not for some time. She told me that she was comfortable about driving over alone. We reviewed the route the evening before and again that morning. She seemed to have it down. (694 to White Bear Avenue etc.) Unfortunately instead of staying on 694, she turned north on 35W. She soon realized her mistake and then tried to correct by turning east. She ended up so confused that she simply came home in tears. As a result, I drive her to any location that she has not gone to recently or is not totally comfortable with.
Mom has no problem going to the U of M Dental School (Faculty Practice) for her periodic teeth cleaning etc. I take her to her regular doctor however, in the Cedar Riverside area. Normal driving around the neighborhood, Northtown, Apache Plaza, Brooklyn Center, Coon Rapids, to church and Julie's is not a problem. In fact Mom seems to know this area better than I do. Mom frequently tells me which lane I should be in. Mom is continually pointing out to me that I exit the TCF parking lot using the wrong driveway. (Even now, years later, I always think of how she used to correct me at TCF.) Mom had no problem driving to Julie's place of employment (St. Anthony) for a craft sale a few days ago. She did however, ask me to drive to her class Reunion at Colfax, as she was not certain of the route. Once in the area, she seemed aware of where to go and where to turn.. I think that overall, her driving is good. One would have to say that she is ultra conservative. I dread the day she will have to give up driving because this will mean a loss of a large share of her independence and will impact her emotionally.
I think Mom handles herself well when visiting with friends. I don't know if or how many suspect anything is wrong or that Mom has Alzheimer's.. Her background of well-instilled and habitual social graces seems to frequently carry the day. Mom is to some respect, operating on automatic pilot in many situations. Mom 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 just a "an interfering or butting-in" husband rather than her assistant. Of course I am not always ont hand, especially when she is out to lunch with a friend.
I don't know if Mom has talked with any of you about her Alzheimer's disease problem as yet. I tried to encourage her to do that in the beginning, however she indicated a reluctance to do so. I have simply stopped suggesting she do it. I know that she at one time (when stressed) blurted out to Julie something about having physical problems, but apparently Mom did not go beyond that.
I am trying to give Mom a very good life during her early and middle stages of Alzheimer's Disease. I want her to have as much enjoyment in her life while the quality of life remains high. Traveling is part of that.
A year ago Mom mentioned that she hoped we could get back to London to see the Bruce's again. When the Sherlock Holmes festival came up this year (September) with a special travel package, it seemed like a good time to make the trip back again. Mom described the just completed visits to the Bruce's as "it was so nice." I doubt that they suspected anything was wrong. When I mentioned that perhaps this would be our last visit, she suggested that I needed a more positive outlook! This was the first time that Mom has not felt comfortable in traveling alone on any of the London buses or underground. I could tell from our joint travels on the underground, that she would not have been capable of doing it alone. (During our 1993 visit she did all of this alone...early on, she was the one that taught me how to use the Underground.)
Note: When the Bruces later learned of June's Alzheimer's diagnosis and that we would not be able to return to London again, Joan Bruce recalled that as June was hugging her goodbye, it was a long lingering hugg. The long hugg caused her to wonder if it was a message. She now feels that June's long hugg was saying goodbye, knowing that she would never again return!
In spite of all of our traveling, we have never been to Branson, MO nor have we been to Hawaii. Mom has heard of the good times had by friends who have gone to both places as well as the experiences of Dave and Dan in Hawaii. She used to kid me (I think) that she would never make it to Hawaii before she died. I had hoped that there would be a forensic science conference scheduled there at some time. Obviously it is not going to happen any time soon. In any event, I have now scheduled us into Hawaii (Maui) in late January 2000. Mom has mentioned several times that she would like to go to Branson. I used to kid Mom, "why go to Branson when she has been to Nashville, the home of Country Western - a few times?" Mom always recalls that her friends that have been there, all thought it was great. Mom feels that a bus tour to Branson with friends would be great fun. We will definitely be going at the first opportunity. (State Farm and our Church have both sponsored groups in the past.) After we achieve the travel goals outlined above, we will go about setting what seems to be appropriate future travel plans based on Mom's desires and her health at that time.
Editorial Notes: June and I also attended a number of forensic science conferences in 1999. We attended the Conferences of the American Academy of Forensic Sciences at Orlando, Florida in February of 1999. In July of 1999 we attended the conference of the Association of Firearms Examiners at Williamsburg, Virginia and later in November we attended the Conference of the International Association of Blood Stain Pattern Analysts at Houston, Texas.
Mom is presently engaged in a massive photographic reclamation project. We have many boxes of old photographs. Literally thousands of photographs that were taken over the years. Most have no indications of the dates, locations, ages of children or grandchildren. Mom is trying to identify the time of the photographs, ages of the people and the locations. Some of the smaller pictures are being enlarged. Mom is having great fun with the project. As a result there are piles of pictures laying all about.
I know that you will not all agree with this, but I do not feel that unfortunate things like Mom's Alzheimer's Disease is a part of God's plan. I don't think that all the bad things that happen in the World happen because God has a master plan that we just do not understand. 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. The devil has his hand in many of the bad things happening in the world. My bottom line is that God did not have anything to do with Mom getting Alzheimer's Disease. Certainly he can or could alter or change events that are taking place if he chose to do so. If he does have a plan, perhaps it is to make me a better person as well as to bring good things out of bad. Surely God is there to give us the courage and to help us get through the bad times. I found support for this viewpoint a year ago while listening to the Pastor of the Calvary Episcopal Church in Rochester. Dan and Diane were kind enough to take me with them when they attended the Mayo Clinic's Alzheimer Conference for Families in Rochester and to also provide the transportation. 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 correctly. 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." I have since, purchased and read the book.
Mom does not mention her Alzheimer's Disease 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 Mom will ever know how well she puts it out of her mind. The other day as we were on our way to her class reunion in Colfax, we drove through North St. Paul on 694. Mom 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 in 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 Alzheimer's Disease, I cringe. Mom 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 her future life's path.
I know you all love Mom. I know also that you all have your own problems and alligators to handle on a daily basis. I would however, request that you go out of your way to convey and communicate your love to Mom. Mom needs to feel like she is encased in a cocoon of family love as she walks down this dark path way.
When it comes to the grandchildren, while all are dearly loved by Mom, Gretchen has been a real jewel. The key is the special attention that Gretchen provides to Mom. I suppose it comes from being one of the older and more matured grandchildren. I am amazed that she finds the time to spend most of a day with Mom on a monthly basis. Gretchen has Mondays and Tuesdays off from her job at the Mall. As regular as clockwork, she calls on a Sunday evening to plan a monthly get together with us. We generally end up having lunch and dinner together, much to Mom's delight. (I don't know if Gretchen is aware of Mom's Alzheimer's problem or not. I have not mentioned it to her and she has made no reference to it.)
Editorial Note: Gretchen did not learn of June's Alzheimer's until after June's Heart by-pass operation in 2001, almost 2 years later . One of the surgical team doctors commented on it in Gretchen's presence.
I still have the original text of Mom's story ("Reminiscences of a Traveling Grandmother") on the computer. When I remember or learn of something new in Mom's life that I may have not known or had forgotten about, I just plug it in to the word processing document. There were a number of things about Mom's church activities that I had forgotten. Example - Moms participation as a volunteer for years in the "Meals on Wheels" program. Also her participation in church activities at one of the Missions on Franklin Avenue in Minneapolis. For years, Mom also went to the Lynnwood Nursing Home every Wednesday evening to visit with the residents and have dinner with them. I did not know until recently that Mom served as a part of an Evangelism Team that called on members of the Redeemer Lutheran Church and church visitors. The more I learn about Mom, the prouder of her I become!.
I also need your input from time to time in this project for Mom's 75thd birthday edition.
This has been a rather rambling letter. I hope that you all held on to the end.
June and Stan’s travel Log for 1999
1999: February 16-20th – Orlando, FL – Disney’s Coronado Springs’s Resort – American Academy of Forensic Science Conferences.
1999: April 5-12th - Cary/Raleigh, NC - Hilton Head, SC - Savannah, Georgia - Our daughter Susan describes this trip: "1999 was when I negotiated a beach house on Hilton Head Island to use. Daniel and I each had an airline voucher for a free flight and we gave these both to Mom and Betty so they could fly out here and we could all go to the beach. We went to Hilton Head, South Carolina. We spent so much time on the beach, gathering sea shells and we all got sunburned. So got out a map and decided to drive to Savannah, Georgia the next day. There we went on the ferry around Savannah. Back to Hilton Head for more beach time. On the way back to Raleigh, we spent the day in Charleston, SC looking at all the historic homes via horse drawn carriage. I remember the horse's name was Levi.It was very memorable as it was the last time I remember Mom being herself."
1999: July 19-24th – Williamsburg, VA – Radisson’s Fort Magruder Inn – Association of Firearms and Tool Mark Examiners conferences.
1999: September 19-27th – London, UK – Sherlock Holmes Hotel – Sherlock Holmes Festival 1999 – visit Gordon Bruce Family, Bexley , Kent, UK – Iceland Air made stopovers at Reykjavik, Iceland both en-route and on the return flights.
1999: October 1-3rd – Colfax, WI – Bloomer Oaside Motel – June’s 1946 Colfax Class Reunion. (White-Tail Country Club Luncheon.)
1999: November 8-12th – Houston, TX – Westin Oaks Hotel - International Association of Blood Stain Pattern Analysts conferences.
The first (1.) or the top photo was taken during our trip to Orlando, Florida during the conference of the American Academy of Forensic Science in February 1999. The second (2.) photo is one of June "acting silly" at our home at 6025 Gardena Lane in Fridley, during my birthday in June 1999. The third (3.) photo is June at the conference of the Association of Firearms Examiners in Williamsburg, VA during July of 1999. The fourth (4.) photo was taken during our trip to London, England in September 1999 and during our attrendance at the "Sherlock Holmes Festival. June is standing with a Sherlock Holmes at the entrance to the Baker Street Underground station. The fifth (5.) photo was taken during the conference of the International Association of Blood Stain Pattern Analysts at Houston, Texas in November 1999. The photo of June and I was actually taken at the nearby beach at Galveston, Texas. The bottom (6.) photo of June with our daughter Susan and grandson Daniel, was taken at the Minneapolis International Airport on 26 December 1999 as they were awaiting their return flight to Raleigh, NC.
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: