Letters to the Children - June's Alzheimer's - 7th Year - February - May 2003
- Published on Wednesday, 12 May 2010 02:30
- 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...
15 February 2003
TO: Dave, Dan, Sue and Julie:
I last sent all of you an update 8 months ago in mid June. The Alzheimer's Disease continues to take its relentless toll and drain on Mom’s mind and mentality. We are now entering into the 6th year since Mom's diagnosis. Considering the time that has passed since her diagnosis, I feel very fortunate that Mom is in as good a condition as she is. With some adjustments here and there, Mom and I are still having a reasonably good life. When she was first diagnosed I was fearful that she would never be able to enjoy our 50th anniversary which was then 5 years away. I am thankful that Mom was both able to enjoy it and participate in it completely.
The Alzheimer’s association indicates that the duration of the disease from diagnosis to termination varies widely. The shortest time is about 3 years. The average is about 8 years. Mom is now working on her 6th year after diagnosis. As I have indicated above, Mom and I are blessed that the Alzheimer's Disease is progressing as slow as it is. There are times that I think that God is ignoring my prayers and the prayers of others. On the other hand perhaps he is acting to slow this terrible disease down. In that regard Mom does appear to be on a very gradual glide path. Unfortunately, Mom was attacked by the AD at a rather young age, (69-70) (It is estimated that only about 3% of men and women between 65-74 will have AD. On the other had after age 85, almost half will develop it.)
Editorial Note: Disease prevalence estimates have now been changed. At age 65, the estimates currently indicate that one (1) person in eight (8) will have it.. (That is 12.5%) The one in two estimate (50%) for age 85 and over still holds.
I cannot realistically expect Mom to ever reach an age in the 90’s like Grandma Ellen or even in the mid 80’s like most women. At times it all seems so unfair to me. This is especially so when we are out at Senior Dining and I am listening to women in their mid to late 80’s griping and complaining about their arthritis and other health problems when they are ambulatory, and otherwise appear to be in good mental and physical health. I have to give Grandma Ellen credit in this regard. She obviously has a serious osteoporosis condition with other associated arthritis, aches and pains. She never seems to complain. Ben Gay seems to be her solution to most of her hurts. She has commented to me many times:
“No one wants to listen to someone complain about their health problems.”
Editorial Note: My Mother Ellen was showing early symptoms of Alzheimer's in the year 2002. (I had to take over her checking account and make her bill payments.) She was diagnosed with Alzheimer's by Dr. J. Scott Persing in January 2004. The disease progressed very rapidly and she passed away from complications of the disease on October 21st, 2007.
Mom tends to get very tired during the day. As a result, we generally take a nap in mid afternoon. I have to admit that I sort of like this nap stuff! I recently read a health item that says naps are good for you!
Mom’s short-term memory appears to be almost or non-existent, as it has been for such a long time. The biggest changes in the last few months relate to:
(a.) Mom's speech, language and vocabulary. The intensity of this varies from day to day. I am getting good at guessing what she means although at times I am stumped. This is frustrating for her. This is a serious handicap for her. Frequently when she refers to one of you she will say our relative or friend while she means son or daughter. She may lay a coat out for me and tell me that she has laid out my shirt. If she wants me to pull the shade or blind she will usually tell me to close up the room. While these words are inappropriate, they are not terribly inappropriate.
Because of this Alzheimer's Disease language handicap, she is unable to do some things as crossword puzzles. The stress and frustration is too great. The doctors advise to avoid activities that tend to be frustrating and stressful for Alzheimer's patients. One needs to keep stress out of their lives as much as possible. On the other hand if she did not have the language and vocabulary problem, then such puzzles would probably be a good type of mood therapy. Not all Alzheimer's patients are affected in the same way. (Language) Mayo advised that working the brain in a stressful way will not prevent the death of a single neuron (brain cell) nor prevent a single speck of protein beta amyloidal plaque from forming on the brain. The brain is not a muscle that is strengthened by work. The doctors tell me that persons such as physicists, mathematicians and space scientists are afflicted with Alzheimer's at the same rate as others. The brain is energized by electrochemical energy. The brain uses electrical-chemical discharges as signals to transmit information through the neurons or nerve cells. The neurons transfer information to other neurons that control the glands, organs and muscles. (There are said to be 100 billion neurons with a 100 trillion of the connectors.) The doctors also commented on a saying that I am sure you all have heard – The saying that we only use 10% of our brain. The doctors say that this is one of the many myths about the brain. Self-help and motivational speakers usually promote this myth. The doctors say we use all of our brain. Different parts of the brain have different functions, such as sight, touch, pain, short term and long term memory, body function controls etc. The brain is very busy all of the time, even when we are sleeping.
(b.) Mom has some little idiosyncrasies that she has developed because of her Alzheimer's Disease. None of these are really bad things, just that they are not the norm for her or anyone else. Examples would be:
1. Mom Sweeps the full length of the curb of the street on both sides of our lot.
2. Mom Cuts up all our trash paper (other than the recyclable papers and magazines) into little pieces that she places in the garbage. This is in spite of our having a shredder that she purchased. She says she "I just like to do it."
3. Mom is a clean freak. Every morning she gets down on her hands and knees and wipes up the bathroom floor for any possible dust in the corners or around the commode. I can’t convince her that she does not need to do this every day. Her standard response is “that’s all right’.
4. When we are out at restaurants, Mom will always stack the dishes and clean off the top of the tables before we leave. This has caused some amusing incidents at the Restaurants. At one place, the kitchen staff rushed out thinking she was angry because they had not picked up the dishes etc. The Manager at Baker’s Square told her that she leaves the place cleaner than when she came in and that they have a place on their management staff for her. One hardly has time to finish the meal before Mom is clearing and stacking.
5. Mom will not allow even the slightest amount of waste to accumulate in the wastebaskets. A single piece is quickly snatched out and taken to the main garbage can in the garage. I can’t convince her that the baskets are for her convenience and should be allowed to accumulate just a little debris. I almost hate to put anything in the wastebasket knowing that she will quickly retrieve it and take it outside to the regular garbage cans.
6. Paper cups are washed and saved. If I try to throw them away I am accused of being wasteful. I cannot convince her that paper cups are intended as a convenience to be used and discarded. I usually try to get rid of them on the sly. At least with paper plates Mom will discard them. Mom first washes them and then cuts them into small pieces to place in the trash.
(c.) Mom's temperament - Personality is also impacted. Mom gets angry with me very easily. Many times I do not know the reasons. I know that I cannot ever raise my voice for emphasis because she interprets that to mean that I am hollering at her and is hurt as a result. I then feel like very bad that I have hurt Mom's feelings. The frequency of such moods seems to be increasing, but the duration is thankfully, short. Most every day she will have a brief episode of this. Most of the time Mom has a friendly, loving, smiling disposition. I suspect that most of our friends have no suspicions that Mom has moods to the contrary. She frequently becomes upset over taking her medications and vitamins. I lay them out for her morning, noon and evening. This is very frustrating to me because she will frequently suggest that I am filling her up with drugs. I will then go over the list with Mom to show her which are drugs, which are vitamins, what they are for etc. It is all posted on the cupboard so she can see it. I always arrange to take my own medications at the same time so Mom will see that I also take drugs/pills. Unfortunately this happens at least a few times every week. Just recently after such an episode, Mom started crying but said she was not mad at me, she said, "I do not want to be this way." Another time in her anger at me, Mom said she was moving to Wisconsin. That afternoon she told me how much she loved me. I gently kidded her that it did not sound that way that morning. Mom then responded that she had no recollection of this at all and added: “Why would I leave a loving husband and a nice home”.
The Christmas card mailings were a minor problem last Christmas. Mom wants to be involved and does not want to leave it up to me. Mom has always done it in the past. Mom gets angry with me if it appears that I am trying to take it over. Mom also does not want to simply sign a card. She always wants to put a short hand written greeting or message above the signature as she always did in the past. I try to get her to agree to sign the cards while letting me address them. This works for a while but at times Mom will forget and try to address the envelopes. Frequently the address will not come out right. We have had some come back because the geniuses at the Post Office do not know where to send them. For example – she addressed some with the city or town on the same line as the street address making it one long address line. I would have no trouble determining where they were going but apparently the intellectuals at the Post Office could not. This resulted in the card being returned. Mom would have trouble remembering a suggested single one line hand written greeting on the card. She would have me repeat it 2 or 3 times as she tried to write it down. Even then she would occasionally leave out a key word. I would try to correct it before it went out or in some cases just leave it as it was. Recently she was signing a birthday card to one of the grandchildren. I had suggested that she simply sign it “Grandma and Grandpa”. It unfortunately came out “Granum and Stan”. Somehow her sister got into the act with me. We corrected it with a little white out.
I have modified some of my own behavior and activities in order to try to compensate for the changes in Mom's life during the past year. I never leave her alone at night. While she says it is okay for me to do so and that she is "not a baby", I know that she is uneasy about it. I have discontinued attending the regular Legion membership meetings. The meetings are always in the evening and usually from 6-9 PM. Although she is a member of the Auxiliary, she no longer cares to attend the meetings, that now includes a light provided dinner. Mom says she does not like the smoke from the cigarette smokers. For the same reason, I no longer attend my evening Sherlock Holmes meetings at the University. I am still able to attend the Twin City Computer User’s Club once a month simply because Mom's friend Gladys has volunteered to come over that night and keep her company. Gladys has indicated that she would want to get together with Mom at least that often in any event. If the various meetings were all in the daytime, there would be no problem. It has been suggested that I attend the Alzheimer’s Association Caregivers Support Group meetings. Unfortunately such meetings are all held in the evenings. Obviously the person scheduling and setting up the meetings was not a caregiver.
I try to keep Mom as socially active and involved as possible. During the week we have an informal ritual of going to the nearby “CUB” for coffee, bagels/pastries for breakfast on Monday through Friday. Frequently this allows us to connect up with friends who like to do the same thing. Every Tuesday morning we attend a Bible Study at our church which is conducted by Harley who is one of Mom's favorite Pastors. The study is preceded by a half hour of coffee, rolls and socializing. Every Wednesday noon we go to the Fridley Senior Dining for lunch. Mom attends the monthly Church “Leisure League” activities every 2d Thursday of the month. This also permits me to attend the State Farm Stag luncheon that is scheduled on the same date every month. We attend the Lyric Theater (Anoka) plays every month on a Sunday afternoon. We go with the two friends that we met on the Branson tour. We also go to the Legion for dinner every Friday night. Julie is kind enough to join us every Friday at the Legion so that it becomes a special night. We also try to go to the “Pizza Flame” one evening every week for pizza and beer. The Pizza Flame is our newest favorite pizza place. It seems very warm and cozy. Interior is decorated with brick and dark paneling and includes a fireplace. Sunday is church followed by lunch at Perkins. Many of our Church friends also go to Perkins for lunch. We also usually go to Target for ice cream every Saturday afternoon. Some friends frequently join us there for a social hour. This is all punctuated by occasional impromptu coffee times at “Java Joes” and lunches here, there and everywhere.
Editorial Note: With June's increased Alzheimer's symptoms, we started reducing our forensic science travels during 2003. We did however travel to Philadelphia, PA for the forensic firearms association meeting held at the Adam's Mark Hotel during the week of May-June 2003.. We had a very nice time and visited one of George Washington's favorite hangouts at the Historic City Tavern. We later attended the Minnesota State division of IAI conference held in St. Cloud at the Holiday Inn during September 2003.
I recently read in the Mayo Clinic's Alzheimer’s publication “Coping”, that eventually, the so called friends will start having reasons for no longer visiting or coming around or just simply not extend invitations. I really felt that such a change would be a long way off. Unfortunately it has already started. We used to have Saturday morning breakfast with some friends every week at Baker’s Square. We did this for years. When something happened to break the regular cycle one week, it was never reassumed. I inquired about it 3 times without getting any explanation. Finally I just decided to let it go.
Mom is still having trouble with the stinging sensation and pain in the nasal areas on the left side of her face. It takes place almost every day for a period of a few hours. Some days it does not bother her. Usually it takes place in the PM and particularly around bedtime. As you may recall, we have been to 2 and now 3 specialists in EENT. They have done MRIs and CAT scans and can find nothing to explain it. They have also done the Endoscopic exams with no results. Treatment for allergies has been without results. The only help when she is having the most problem, is to give her 2 ibuprofen tablets to take away the pain. I do not know if this is somehow related to her Alzheimer's and the medications. She did not have the problem prior to her Alzheimer's. Finally we went to a pain clinic and saw a neurologist who specializes in atypical facial pain. He has put her on Prescription Lidoderm facial patches that have a medication that tends to deaden the area. I usually apply them to her forehead over the one eye and on her cheek next to her nose. They are left on overnight. All that will do is offer evening temporary relief. This doctor also tried to get her to try acupuncture. At least for now, Mom has ruled that out. The idea of being stuck in the face with a bunch of needles is not what she is willing to do. The pain clinic also had a psychological interview prior to the neurological examination. The psychologist asked her to repeat after him three words. The words were - Tree, House, and Man. This she did. He then told her to remember them, as he would ask her about them later. 5 minutes later he asked her if she could remember the three items he had listed earlier. She could not remember any of them.
Editorial Note: I previously reported on June's facial pain in my letter to the children back in December 2001. Eventually we went to the University of MN Oral-Facial Pain Clinic. They were the ones who finally came up with the answer. It was the Aricept medication that 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 and immediately the pains went away forever. This was not a side affect listed by the manufacturer or anyone else!
Mom no longer reads as much like she used to. I think she has a problem staying focused. She still buys books by her favorite authors. (Max Lucado, Billy Graham etc.) The other day however, Mom surprised me by reading from a book of poems. (Garrison Keillor Collection) Mom will also occasionally read parts of the new 3rd edition of the little booklet "Reminisces of a Traveling Grandmother" on her life that I authored to honor her for her 75th Birthday. She will always ask me when did I do the book, thinking that I had just completed it. This just happened again a day or two ago. She will also always ask if each of you received copies. She is always surprised to hear of the number of people that I have sent copies to.
Mom also seems to have a deep appreciation for the things of nature – the beauty of nature that I sort of take for granted. Almost every afternoon on a sunny day, she will take me to the window to witness the beauty of the sun going down. In the summer months she will always take note of the beauty of the trees and the lawns looking down the hillside as we sit around the kitchen table.
Mom very much needs your prayers. I hope that you are including her in your prayers EVERY day.
Again, this letter has gotten far too long, but then there is always so much to say. It is my effort to get you at least partially up to speed about your Mom. I feel the detail is necessary because frankly, most of you do not see enough of her to really know what goes on in her life. Susan is in North Carolina and most of the rest of you see her less than once a week.
Photos - 2003 - Notes: (1.) The top picture of June and I, was taken in December of 2003. At this point, June had completed a full 6 years after her diagnosis...June was now in late-middle stages and about to enter into the last or final stages of her journey through Alzheimer's...This was the last formal professional photograph taken of June and I. (2.) The second picture was taken on Christmas Eve 2003, at our daughter Julie's home. (3.) The 3rd picture is June in front of the Historic City Tavern in Philadelphia, PA in June of 2003. (4.) The next to the bottom photo taken in September 2003 at the Minnesota State wide forensic meetings held at the Holiday Inn, St. Cloud, MN. (5.) The last photo was taken at June's Colfax Class Reunion held at the Colfax Country Club October 2003.
8 May 2003
TO: Dave, Dan, Sue and Julie:
It has been over five years since Mom was diagnosed with AD. I feel that we are at a time that Mom needs your prayers more than ever.
I would hope that you all remember Mom in your prayers on a daily basis. I know that it is easy to forget with all the hustle and bustle of a normal day. I am sure that many times after a long day you will fall into bed without another thought except to get some sleep.
Maybe during some quiet time during the day you could put in a prayer for Mom. Maybe you could put a little reminder on your desk, or wall or refrigerator.
I tend to forget sometimes too. I am reminded most times in the evening after I put the lights out and I hear Mom quietly breathing along side me.
I am sure that a silent prayer will do just fine whenever Mom comes to your mind.
My prayers are all silent ones. One of my many character defects is that I have a difficult time praying aloud without getting all choked up and so emotional that I am sure I am unintelligible even to God. I find that when I pray silently I can pray with great clarity regardless of my emotional state.
Jesus said, “Again I say unto you, That if two of you shall agree on earth as touching anything that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.". Matthew. 18:19-20 (KJV)
I am sure we can all agree to ask for God’s help with Mom. All we have to do is remember each day to do it. Would you all try to make this a daily ritual?
Last Visit to Mayo
We continued our annual visitations to Mayo Clinic’s Alzheimer’s Research Center at Rochester until the 19th of June 2003. (June’s 6th year after diagnosis but 7th year since first symptoms.) The visits were exceedingly stressful for June and there appeared to be no good reason for continuing them…June was exhibiting great fear at the time of the visits…it appeared to me that she feared I would leave her there…(June was in that phase of her disease where “fear” is a part of their daily life.) Mayo appeared at that point to be just cataloging June’s progress for their research purposes…They agreed with me that further visits to Rochester would not be necessary. Dr. Knopman’s very complimentary (unexpected but much appreciated) last report to Dr. Stein on June’s condition and care stated:
“Alzheimer’s Disease moderately severe…Mrs. Berg has unfortunately continued to progress compared to a year ago…Mr. Berg is a fantastic caregiver…He takes excellent care of Mrs. Berg and she is being very well cared for…We are not going to see Mrs. Berg in follow up in the Research Center because of the severity of her dementia at this time, but we will try to keep in touch by telephone.” (The suggested phone contacts did not take place.)
June and Stan’s travel Log for 2003
2003: May 10-12th - Barron/Rice Lake, WI. - Mother's Day Celebrations at Lehman's Supper Club, Rice Lake. (My mother Ellen was included.)
2003: May 27-June 1 – Philadelphia, Pa – Adam’s Mark Hotel - Association of Firearmsand Tool Mark Examiners conferences. (Side trips - “Spirit of Philadelphia” Lunch Cruise on the Delaware River- Lunch at the historic “City Tavern” where George Washington and the Continental Congress once dined.
2003: June 18-19th - Rochester, MN - Hilton Hotel - Mayo Clinic - June's follow up Alzeimer's examinations.
2003: - September 10-13th – St. Cloud, MN – Holiday Inn Hotel - MN Division of the International Association for Identification conferences.
2003: October 3-5th - Colfax, WI – Bloomer Inn. Luncheon at White Tail Country Club, Colfax. – June’s 1946 Colfax Class Reunion. (See Photo below of June and Stan at the Reunion Luncheon)
2003: November 6-9th – Milwaukee, WI – West Bend, WI – Visit June’s sister Lenore and her husband Bud. Trip to Milwaukee and return via Amtrak. Celebrate June’s birthday at West Bend.
Note: I find that we had originally intended to go to the Conferences of the AAFS in Chicago in February, 2003 and the IABPA at Odessa, TX in October 2003. I had made up file folders with the registration and transportation materials but no further action was taken. My best recollection is that the Odessa, TX meeting was determined to be too difficult to obtain transportation to and from Odessa. There may have been health problems of June’s early in the year. I find that my personal calendar had a note in January about a pain clinic for June…she was in a period of intermittent facial pains that was later determined to be caused by the Aricept medication she was taking for her Alzheimer’s symptoms.
We arranged for our daughter Susan and our Grand Son Daniel to come home (from Cary, NC) for the Christmas Holidays. 21-28 December 2003.
(Colfax Class Reunion, Colfax Country Club October 2003)
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: