Letters to the Children - June's Alzheimer's - 9th Year - A Beautiful Mind Destroyed! - March 2005
- Published on Thursday, 17 June 2010 16:22
- Written by Stanton O. Berg
As the year 2004 was coming to a close, June's personality, psyche, mind and emotional being, began a transformation that culminated in the early months of 2005. The changes in June's mind and personality reached a fever pitch during this time period. The mind, and the personality of the kind, friendly, gentle, considerate and loving person that I always knew June to be, was rapidly changing into an angry hostile stranger that I no longer recognized. The body I recognized but the mind and personality were no longer June's. The memory problems of the past many months now took on a minimal significance in the face of the frightening new June that was emerging. Only occasional glimpses of the "June of old" could be seen from time to time thereafter. These cruel psychotic changes in June's personality and mind, signaled clearly and unequivocally, the arrival of the late stages of this terrible disease. The easy times of simple memory handicaps were now in the past. The "Halcyon days" were over.
Shortly after the year end 2004 and in the early months of 2005, June was experiencing hallucinations that left me devastated. June's hallucinationswere such that at times she thought that our home did not belong to us and that the real owners were coming back to harm us. At such times, June thought the home belonged to the "Girls". I do not know who "The Girls" referred to but I recalled seeing June one night staring at one of her wall mounted plates that had a painting of lifelike looking small girl dolls on it. (I quickly removed the plates from the wall.) One time in the middle of the night, I found June hiding behind a chair in our living room. June would have periods of sadness and crying. Some times June would look at me as a stranger who did not live in our home and would order me out of the home.
Eventually the hallucinations proved to be a passing late stage Alzheimer's phase in June's journey through the disease. The other personality and mind changes however remained permanent. On March 16th, 2005 June was placed in the care of an Alzheimer's care/nursing facility. June passed away from complications of Alzheimer's on 23 October 2008. During the last two years of June's life, she did not appear to know me, did not speak and rarely opened her eyes except for short periods of time. Our communications during our days together in those last two years evolved into a simple holding of hands as we sat together. June will however, always remain the love and light of my life...
The following series of letters to the Children, clearly outline this late stage transformation.
26 January 2005
To: David, Daniel, Susan and Julie:
Mom seems to be undergoing a personality change. The bad moods, anger periods, down periods, sadness and crying that were rare months ago, are now the norm.
Today for example, Mom had down moods beginning this morning and lasting until mid afternoon. One of the moods extended through our senior dining (Fridley Senior Center) this noon. Our friends at the dining center were raising their eyebrows and wondering "what was up". Moms mood for the rest of the day has been much better. Yesterday the down mood continued for most of the day. I frankly do not know how to deal with it and am trying to counsel with Dr. Stein.
Yesterday Mom was angry with me because I would not drive down to Wisconsin. Mom wanted to visit her mother. I tried to explain that her mother Haldis had passed away several years ago. Mom did not seem to believe me. Last night as we were laying on the bed, Mom decided that she wanted to go home. I told Mom that we were home. Mom accepted that explanation and then went to sleep.
On one day Mom will love me and tell me how great I am. The next day I am mean because I won't do something that we can't do anyway or cannot do at that time. Yesterday Mom wanted to move down to Wisconsin and live with the "girls". I do not know who Mom meant by the " Girls."
I understand it is normal for Alzheimer's victims to take antidepressant drugs. I hope there is something like this available that would be suitable in Mom's case.
Editorial notes: I later learned that although it is common to prescribe anti-depressants for Alzheimer's victims, no such drugs have been approved by the FDA for use with Alzheimer's or other dementia patients. Research shows that their value for Alzheimer's is nil...See the article on this web site on the subject of Anti-depression drugs and Alzheimer's....click this link:
I had sent a copy of the above email to our Redeemer Lutheran Church. Shortly thereafter, I received the following email (28 January 2005) from Mona Glesne who is the wife of the Senior Pastor at our church, Redeemer Lutheran.
I'm praying that the Lord will give you strength as you witness June's decline and the loss of your beloved wife's mental capabilities. No wonder caregivers have called this a "descent into hell". My dear brother, only the Holy Spirit can minister to your spirit and I pray the doctors are able to help in someway. Do you ever speak with Dr. Don Fox and how he deals with his dear wife Gloria who no longer is able to be with him? Just a thought. Thank you for including me in these letters. I do pray for you and am pained by your experience which moves me to pray.
Love in Christ, Mona."
Editorial Note: I did subsequently connect up with Dr. Don Fox in late 2005. Don has now become one of my best friends. He is one of the finest men I have ever met. We have now for years been meeting at Perkins for breakfast on the first Tuesday of every month. In addition, at the current time I am visiting both Don and his wife Gloria at the Camilia Rose Nursing Home in Coon Rapids on the first Thursday of every month. Gloria Fox was diagnosed with Alzheimer's in 1996 and was placed in a nursing home for her Alzheimer's care in 2003. (Both dates predated June's diagnosis and nursing home admission by 2 years. Gloria, who is in the late stages of this disease, is still fighting an exhausting battle with Alzheimer's...now going into her 15th year. (The average time from diagnosis to termination is 8 years. President Reagan was 10 years. June was almost 11 years. My mother Ellen was 4 years. )
30 January 2005
To: David, Daniel, Susan and Julie:
Mom and I went down to the Barron-Rice Lake area over the week end.
Grandma Ellen is in a new room now. This one is permanent. The other one was temporary as the hospital was taking over the rooms in that wing. This room is a private room, smaller but better laid out and Grandma Ellen seems to like the room.
Mom was in a good mood for most of the day on Saturday but then became angry over taking her medication pills on Saturday evening. Sunday did not start off well but got much better as the day went along. Although Mom had a tiring day, she was in a very good mood as the day winded down.
Dr. Stein had prescribed a new drug for Mom for Anti-depression and anxiety. It is called Lexapro. The internet information says that best results are seen after the drug has been used 1-2 weeks. Mom took her 2d pill this morning, so we are underway with it. I hope and pray it will be helpful. When Mom is so down and angry and sad, nothing seems worth while anymore.
13 February 2005
To: David, Daniel, Susan and Julie:
Last night was a very sad night. The day had been a normal Saturday with many activities.
However, when we went to bed, Mom started looking at things on the wall and then declared that this was "not our home" and that we had better leave before the owner's returned. I tried to assure her that this was our home, we built it and had lived in it almost 40 years. Mom kept saying "No, No, No." Finally she became so frightened that she said the owners would "come and kill us". Mom appeared to be afraid if I even left the room to go to the bathroom. Finally she jumped out of bed and said "we need to leave". She was crying and obviously afraid.
I was at my "wits end" to know what I needed to do to calm Mom or reassure her. Everything happens on a week end it seems. I asked Mom if she would believe her sister if I called her. She said "No". I asked Mom if she would believe one of our children if I called them for her. She did not say yes or no. I do not think that Mom even recognized me at the time. Several times I asked Mom if she knew who I was. Mom just stared at me.
I tried calling Dan first because his number was one I easily remembered. He promptly answered and talked with Mom for a few minutes. Mom was crying all the time. Dan at least temporarily got Mom to believe that she was safe with me. Mom for a time seemed to again understand that this was our home. However, an hour later Mom was back on the same "Not our home" subject and "What would we do when the owners returned". Mom got mad at my arguments to the contrary and finally shouted at me "You are stupid". She then rolled over and went back to sleep. Mom slept for an hour. I then felt I needed to get her into the bathroom. When Mom came back to bed from the bathroom, we went through the same subject ("Not our home") all over again.
The first thing this morning, Mom again started on this "Not Our Home" subject. She told me I was wrong and that this was not our home! I finally got her into the shower and dressed. After dressing Mom, she seemed to get away from the home ownership question and seemed to accept that it was our home. I am sure that this is going to be a recurring problem and I may be calling some of you at night in the future for your help.
With this rate of change, I hate to think of what Mom's mentality will be like by this year end.
16 February 2005
To: David, Daniel, Susan and Julie:
Last night Steven stayed over night with us.
Mom did not want me to be in the bedroom with her. I slept in the guest bedroom I did not want Mom to be alone so Steven was kind enough to lay on the bed with her overnight.
At first Steven asked Mom if she wanted "Stan" to lay with her. Mom said yes. When I came in Steven said to Mom: "Here is Stan, here is Grandpa! Mom just replied: "No". Steven than asked Mom,: "Isn't this Stan". Mom said "No." Mom did not recognize me other than as some stranger. This morning Mom acted antagonistic towards me.
Today (16th) is the anniversary of Mom and my 52 and 1/2 years together. It appears that our life is over!
18 February 2005
To: David, Daniel, Susan and Julie:
I no longer sleep in the same room with Mom because Mom is being terrorized by the so called "Girls" who supposedly own our home. The last two nights we were in our bedroom together it started out great. Then Mom would start seeing her hallucinations with the result that one night she ended up hiding behind a chair in the living room. The second night of the two, everything was great until early in the morning when she started thrashing around. When I asked Mom what was wrong she said "you don't belong here, the "Girls" don't like it". That misery went on for about two hours.
When I stay out of the bedroom, Mom has a better nights sleep. Mom finds Steven and Gretchen acceptable. Steven stayed with Mom one night and Gretchen did so on two nights.
The so-called "Girls" are very real to Mom. Tonight I brought a book up from my office to read. Mom asked me if I was going to put it back. Mom said the "Girls" would not like my taking their book. I showed Mom that it was a new forensic book sent to me by the author and autographed to me from the author. When Mom saw the autograph, it apparently calmed her fears. Mom seems to think everything here in the house belongs to the "Girls".
I think that I have Mom's care covered for the week of and after my hip replacement surgery. Susan is coming out from Raleigh for a week. Julie is staying over and sleeping with Mom the next two nights. Gretchen is good enough to cover again tonight. Next week, the week of surgery, Moms sisters will be here.
20 February 2005
To: David, Dan, Susan and Julie:
It has been 10 days now since Mom started having her hallucinations. It has been 8 days since we dropped the Lexapro. It has been 7 days since Mom started her new sedation Medications.
While there appears to have been a reduction in the severity of the hallucinations, they are probably here to stay.
Editorial Notes: The Lexapro (antidepressant) appeared to aggravate June's hallucinations and was discontinued. The new sedation medication referred to was Haldol. The drug Haldol whichis an antipsychotic drug, was also later discontinued as of no benefit. The drug Haldol presently has a "Black Box" warning label. Neither Lexapro or Haldol are approved by the FDA for Alzheimer's or dementia patients. There are no anti-depressant drugs or anti-psychotic drugs approved by the FDA for treatment of Alzheimer's or dementia symptoms.
Mom's day consists of:
1. Periods of sadness and crying.
2. Periods of hallucinations.
3. Periods of apparent anger at me.
4. Interspersed with periods of good humor, consideration and kindness.
Company visitations always seems to brighten Mom up.
My days are often very tense and sometimes heart rending. As an example of what has recently become a typical day...today Sunday (5-6 inches of snow today.) the following was noted:
Mom wanted a nap in mid morning. I suggested that we both take a nap and we jointly got our blankets so as to lay down on the bed n the guest bedroom for our nap. (We have done this many times in the past.) Mom changed her mind and decided that she would rather lay down on the TV Room couch and that I should sit in the TV Room recliner.
Later on, Mom became confused and crying saying "I don't know what to do.". I tried to console her. Mom asked me to sit on the living room couch next to her which I did. We held hands for a half hour of so. This caused Mom to get over her crying and sadness for a time.
Later Mom told me to go into the kitchen and sit down because the "Girls" were coming. (These are the persons who supposedly own the house and everything in it.)
As I was later preparing to warm up a hot dish for supper, I removed some pots and pans from the top oven. Mom in a loud voice told me that the pots and pans were not mine and that they belonged to the "Girls".
After playing the piano/organ for a while Mom announced that it belonged to the "Girls". Mom could not be convinced that I had purchased it for her. She started to get angry so I dropped the subject.
Later Mom asked me how long I would be staying. When I said all evening, she acted disgusted and irritated.
Earlier in the evening Mom talked about being afraid that the "kids" would come around and cause trouble. Mom has mentioned this frequently the last few days. I believe that Mom is referring to the young couple who crashed into our garage with their car in the early morning hours a few years ago. It is possible that she was referring to the "Girls.".
At times, it is almost a full time job picking up after Mom. She frequently takes clothes down and lays them on the bed. Sometimes Mom will open drawers and take the contents out and lay them on the bed.
I appreciate the help given to us by Steven, Gretchen and Julie by staying and sleeping over night. I do not want to leave Mom alone in the bedroom while I am in another bedroom. My being with Mom in our bedroom seems to trigger a late night problem while early in the evening there is no apparent problem. My staying in a different room with someone else staying with Mom has removed the hallucinations late at night. First it was that the "girls" were coming to kill us because they did not want us there. Later it became me that they did not want there. One night when Mom was restless, moving about and unable to sleep , she announce that I was not supposed to be there. One night Mom encountered some unidentified evil man in the bathroom.
Steven was kind enough to spend one night, Gretchen stayed three nights and Julie has now stayed two nights. Next week when I have my right hip replacement surgery, Mom's two sisters will be here for that week to care for her. Susan is flying in for the following week so we will have the next two weeks covered.
My current concern is that I really cannot expect other members of the family to cover my needs with Mom forever. What I am saying is that this looks like a permanent problem and that I will need continuing help with Mom for the nights and the early mornings. While I am willing to carry on as in the past, with the changes taking place with Mom's Alzheimer's, I must have continuing future help in the evenings and early mornings. I need help at those times when Mom does not recognize me and is distrustful of me..
Perhaps when Susan is here we can have a family meeting and get everyone's input. A solution to the problem is needed on a long term basis.
Editorial Note: On Wednesday February 23rd, 2005 I checked into Fairview University Riverside hospital at 6:00 AM for a total hip replacement surgery on the right side. I had made prior arrangements for two of June's sisters to be caregivers and to manage June's care during the time of my hospitalization. They would live in our home and one would sleep with June every night. This was a mistake on my part. I totally over estimated their ability to properly care for June. On the 24th, (Thursday) the day after my surgery, June's sisters decided they could no longer manage June's care and that evening they returned to their homes in Wisconsin. In a letter of explanation and apology from one of the sisters, the following is quoted from the letter:
(13 March 2005) ..."I don't know where to begin this letter but wil do my best to explain what happened. Quite honestly, we were not prepared to handle the situation with June...Her actions and behavior were so uncontrollable...became very upset and angry...We really didn't know what to do.......we called Julie and told her we couldn't do this anymore and wanted to go home...June just wouldn't let us help her...I hope you will forgive..."
(I had previously left written suggestions with the sisters on June's care and in particular the administration of her medication. Thoughts and ideas that had been useful to me in the past....the need for a non dictatorial approach, the suggestions that we both take our medications together (most seniors are on some form of medication), that the doctor wanted her to have the medications and when unsuccessful, let a few minutes of time pass and then try again.) After this abrupt and sudden turn of events, Julie arranged for time off from her job, took charge and organized the help of the other children as well as spending that night with June and the following day. (Friday) On Saturday (26th) Dan took over June's care for the day. On Sunday (27th) David assumed June's care. On Monday morning the 28th, Susan flew in from Raleigh, North Carolina to spend the week in our home, caring for June. That afternoon, (Monday) I was discharged from Fairview Hospital to return home. Two of our grandchildren, Gretchen and Steven played key roles, spending evenings with June before, during and after my hospitalization. It was truly a joint family effort.
My daily log book that I routinely maintain has notes that indicated our son Dan brought June down to visit me the evening following my surgery. A smiling and cute looking June held my hand during the visit and when they were leaving June said: "We will come to see you again!" The following evening June was back with a family friend Jerry, to visit me once again. (This was the evening that June's sisters departed.)
10 March 2005
To: David, Daniel, Susan and Julie:
I seem to have no control over Mom when she has one of her spells or is in one of her moods.
Two days ago, Mom tried to physically push me out of the house. I thought at one point that she was going to hit me with the phone. She started dialing numbers at random that made no sense. When Mom saw that I was not leaving the house, she went outside with only a sweater and pants on. I waited a few minutes thinking she would come in when she got cold. When she did not do this, I went out to get her. Mom had disappeared. I could not see her any where. I was just ready to dial 911 when Duffy's brought Mom home. I tried to explain to them what was going on. They acted and talked like they understood the situation.
The next morning it was much of the same. Mom would not do anything that I would suggest. Mom put on her heavy Eskimo like jacket but had no shoes on. Mom refused to put her socks and shoes on. I was fearful that Mom would again go outside. Mom seemed totally beyond my control and out of reach. I have such feelings of failure much of the time. I always thought that I would be able to take care of Mom during our life times together.
During this chaotic time period, I had been sending copies of my correspondence to our church Senior Pastor David Glesne.(The Redeemer Lutheran Church.) Below is his response
I feel your frustration and your feeling of being caught in a "no win" situation. Do you think you can continue and persevere through it? Can you continue without being emotionally and psychologically destroyed yourself? Only you can answer these questions. If your answer is "no" have you considered a care facility for June? sometimes we are forced to consider steps we never thought we would even contemplate taking.
Editorial Note: On 16 March 2005, June was placed in the care of the Wellstead of Rogers an Assisted Living Home for Alzheimer's and dementia residents. The decision process for June's placement in the care of an Alzheimer's nursing facilty was a difficult and a painful one. There is an essay on June's web site that details the sad journey of the Berg family in making and coming to this decision. Click on this link:
Photo Notes: Top photo (1) was taken in February 1998, just one month after June was diagnosed with early stage Alzheimer's. That Photo was taken in San Francisco, CA during the Conference of the American Academy of Forensic Science. June shows a sharp crispness and beauty in appearance that has not yet been affected by the Alzheimer's disease. The second (2) photo was taken in the kitchen of our home at 6025 Gardena Lane on 10 March 2005 by our granddaughter Gretchen. The third (3) photo was also taken in the kitchen of our home by Gretchen on 11 March 2005. The fourth photo (4) again taken at our home at 6025 Gardena Lane, on 15 March 2005. This is the day before June left our home forever to be in the care of a nursing facility. The fifth (5) photo was taken that evening (15 March 2005) and shows June with our granddaughter Gretchen while having dinner at a restaurant. The last four (4) photos demonstrate the faded look with physical facial changes that have resulted from the impact of Alzheimer's. The bottom picture (6) below was taken at the Wellstead in November of 2005. This was a family gathering for June's birthday. In all of the last 5 photos, the sharply glowing radiance of her physical beauty is fading in tune with June's changes in her mind and personality.
Addendum - Postscript: The Alzheimer's Movie "Away From Her"
The 2007 movie “Away From Her” was recently given to me as a DVD. While parts of the movie including the main story plot, were unrealistic, much of the movie served to awaken many sad memories of my life with June during her 11 year journey through this terrible disease Alzheimer’s. The portrayals of the typical Alzheimer’s memory problems, becoming lost, putting items in unusual locations was excellently done. The acting was very good. The movie left me flooded with sad emotions. It was a powerful movie but a sanitized picture of the disease. (No mention of hallucinations, losing ability to walk, eating and swallowing difficulties, major personality changes, seizures, unresponsiveness etc.) A "Lionsgate" Film.
The packaging described the movie: “Married for almost 50 years, Grant (Gordon Pinsent) and Fiona (Julie Christie) appear to have an unwavering commitment to each other. This serenity is broken by Fiona’s increasingly evident memory loss. For a while, the couple is able to casually dismiss these unwelcome changes. But when neither Fiona nor her husband can deny any longer that she is being consumed by her disease, the couple is forced to wrenchingly redefine the limits of their love and loyalty – and face the complex, inevitable transition from lovers to strangers.” This description hardly does justice to the main story plot. (A film by Sarah Polley.)
A central theme of the story is Fiona’s new life in an Alzheimer’s facility with a new found attachment to another male Alzheimer’s resident and a former family friend. Eventually and gradually, Fiona’s husband Grant becomes one who is almost excluded from the relationship.
I also had my own experience with June finding a male friend at the first Alzheimer’s assisted living facility in which she was a resident. The differences between June and Fiona however were striking and light years apart. I remember clearly the time when June took me to another section of the Alzheimer’s facility in order to introduce me to her new male friend. It was obvious to me that he was a simple casual friend to her and not a cherished companion. When ever I would appear on the scene, June, if with this friend, would immediately abandon him and spend all of her time with me. Our daily parting was most always tear filled and emotional. The opposite was the theme of the movie relationship. Fiona would quickly get rid of her husband (simply walk away from him) in order to rejoin her resident male friend. I did however get some hostile looks from June’s resident male friend and on one occasion he said some angry words to me. I chose not to engage him in discussion or debate. It would have served no useful purpose. All involved would have become upset. One cannot debate an Alzheimer's mind. Obviously in his mind, his relationship with June was not a casual one. He apparently thought that June belonged to him! June however, never exhibited any attachment or special emotional connection to her male friend and in a few months paid scant little attention to him. On the other hand, Fiona over time grew more and more emotionally attached and bonded to her new friend. Fiona’s husband Grant eventually in despair, accepted this new relationship status. Meanwhile Grant developed is own relationship with Fiona’s friend’s wife (played by Olympia Dukakis) who had ended up in a similar and opposite side situation with regard to her husband. “Oh what a tangled web we weave…”
To me, this story of the changing husband and wife relationships in an Alzheimer’s setting is unrealistic considering the disease. The Alzheimer’s victim has a mind and a memory in which there is a continual change taking place as the brain slowly dies. The screen writer was exercising considerable literary’ license or simple ignorance of the disease to produce a more dramatic while unrealistic story. During the time that June was at the first Alzheimer’s facility, I became very good friends with three other husbands of Alzheimer’s wives who were residents at the same facility. (Normally I would be with June for most of the day and leave in late afternoon.) I did not see anything that would remotely resemble the story plot of this movie. I have also observed many husband and wife Alzheimer’s tragedies over the past 14 plus years and have never seen a hint of this story plot in real life. June did not always understand who I was. I recall the time when I was sitting with June and three other lady residents. They were describing husbands. June remarked to the group that she did not have a husband. I explained to her that I was her husband. She looked at me a little puzzled and remarked: “I forgot!." I was not hurt by this exchange as I understood the disease. For the most part I was viewed as a friend while obviously a close one. Frequently she would cry when I left at the end of the day and often I would be crying with her!
In addition, Fiona’s decision to place herself into an Alzheimer’s facility for care and treatment when her husband Grant asked her not go and at a time when she was obviously still in the early stages of the disease was most unrealistic. Further, while it is not uncommon to see nursing home residents playing cards, one does not see this being done in an Alzheimer’s facility. The simple reason is that the short term memory needed to remember the played cards is gone for the victims of Alzheimer’s. They would be too frustrated attempting to play cards. Instead one will see them working with simple puzzles in which they fit different shapes of cut out pieces into the appropriate sized hole on a board. (Stars, circles, squares , crescents etc.)
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: