A Christmas Letter - December 2005 - June's Alzheimer's - 8th Year
- Published on Friday, 23 May 2008 19:48
- Written by Stanton O. Berg
This is my first attempt at a Christmas Letter. I know that some people like Christmas letters and others are not overly fond of them. Because of the many changes that have taken place in June’s life since last Christmas, I did not feel I could adequately explain all that needed to be said in just a few scratched notes at the bottom of a Christmas card. If you will bear with me this year, I promise that if I am still around next year, I will return once again to the short note at the bottom of the card.
If you do not care to hear the details of June and her Alzheimer’s and the Christmas connection or If you detest sentimentality, then I would suggest you trash this letter and go on to something else.
This year June went into her 8th year of Alzheimer’s since her diagnosis. At first the disease was mostly a loss of short term memory. This was followed by a gradual loss of the long term memory and cognitive powers. Finally the mood and personality changes took over. The memory losses are easy to handle. The cognitive changes along with the mood and personality changes are heart rending. June was the little lady who on her own took her mother and stepfather on a coast to coast tour of the United States while doing all the driving and navigating. June was also the lady who taught me how to travel around the city of London economically and quickly by using the underground system. I had always used a cab because I had thought the London subway was too complicated and slow until June showed me the way. While I was attending Forensic meetings during the day, June was navigating all around London on her own. Over the years she did the same in Zurich, Rome and other large European cites. Now June is lost in a large store. June was never one who gave much import to her own accomplishments and was totally without guile or pretense. June has never strayed far from the personality and character found in that Colfax, WI farm girl.
Until this year June has been slowly sinking into the dark abyss of Alzheimer’s. Early this year her decline accelerated more rapidly.
June started having periodic hallucinations when she at times did not think our home really belonged to us and that the real owners were coming back to harm us. Her fear was so great one night that I found her hiding behind a chair in the living room. At times she would look at me as a stranger who did not live there. She would order me out of the house. One time in frustration she ran away to a neighbor’s home in mid winter without a coat. At times she would talk about wanting to go home. I am told by Mayo and others that this is a common request by Alzheimer victims and usually refers to a childhood home. She would have very wide mood swings and personality changes during the course of the day. At times things would seem to be alright for part of the day, but such times would then always be followed by the next negative mood change. She would also have daily periods where she would become sad and cry.
I had always thought that I was capable of taking care of June for as long as we both would live. I really did not understand how bad Alzheimer’s could be in spite of my research of the subject. During some of the worst periods, our children and grand children would spend what time they could with us to try to be a calming influence. Steven and Gretchen in particular put their own life on hold and spent many evenings and partial days assisting with June. On more than one occasion, Erik took June out for an afternoon of activity. Unfortunately during this critical time, I had to be hospitalized for an already delayed right hip replacement surgery. With Julie organizing the efforts, She, David and Dan all pitched in to provide around the clock care for June. This included Susan flying in from North Carolina for a week. We even tried an “in home care” service. It finally reached the point where the family all agreed that only professional care in a special facility could consistently provide the future care that June needed.
We found an assisted living home called the “Wellstead of Rogers.” It is located in Rogers, MN which is in the northwest corner of the Twin Cities metropolitan area. It takes 20-25 minutes to drive there from our house in the suburb of Fridley. The Wellstead specializes in and only takes Alzheimer’s and dementia victims. It is clearly one of the nicer physical facilities of its kind in Minnesota.
The rooms are private and relatively spacious. I was able to easily move her “Clavinova” piano and lamp in for her to use if she should feel so inclined. We also moved her favorite pictures from our living room at home to make things seem more familiar and friendly to her. In addition we moved one of our old living room chairs. The rooms are already furnished with a single bed, night stand and lamp, a large wardrobe closet and a rocking chair. Each room has its own private bath. We have added a small CD player with a few favorite CDs. I purchased a small TV set for her room but it seems to hold no interest for her.
When the time came, I just could not bring myself to take her out to the Wellstead and leave her. One of our sons (Dan) and his wife (Diane) undertook this terrible duty. On the morning that June left our home, (March 16th) I and one of our grandsons (Steven) were sitting in the window watching through tear filled eyes as Dan, Diane and June drove away. It seemed like part of my life drained away and left with them. To me it was one of the worst days of my life.
Although June’s character is indelibly stamped into every room of the house through the furnishings and decorations, I no longer feel that it is a home. It is now just a house or a shelter. A home must have a heart in it. When June left, the heart also left as did the love and light of my life. The poets and other writers have been telling me all my life that a home must have a heart in it. I thought I knew what they were talking about but now I know that I never really did understand. I know that there are many husbands and wives in this world who live under similar circumstances and know exactly what I am talking about. Every day June will at some point say to me – “Shall we go home now?” I quickly change the subject because I know that I lack the power or ability to bring either one of us home.
God however did give me a gift that dark day in March. Frankly, I had been very angry with God because of June’s worsening condition in spite of a great many prayers by a great many people in her behalf. God did answer my last prayer before June’s departure for the Wellstead. I asked him for a peaceful 24 hours before June left. It was a nice 24 hours. June did not fall into one of the Alzheimer’s angry and cruel moods where I would be the enemy. Instead I was once again her friend. Earlier in the day she had one of her normal morning sad periods where she cried and looked so unhappy. As usual, I would hug her and tell her everything would be all right. That morning for the hour before Dan and Diane arrived, June and I sat on the couch and held hands and I told her how much I loved her. I told her I would always love her and that she was the light of my life. She then slept briefly with her head on my shoulder. She also briefly played her Clavinova piano for the last few minutes. Her departure with our son was peaceable. She was told that our doctor had wanted her to see a place that would help her.
Her adjustment to a new life at The Wellstead has been very difficult for her. This has also been very difficult for me as well as the family. I still have daily moments when it seems that grief temporarily engulfs my mind.
June was always very proud of our home. Almost invariably when we would back our car out of our driveway, she would look back at the house and comment “We have such a nice home!” Now as I back the car out of our driveway, I am haunted by her words and have such a feeling of guilt because I am still here in the house she loved so much and she is at The Wellstead.
I am not sending Christmas cards this year as this letter and enclosures will not easily fit into a card envelope. The Christmas cards that you will receive next year (God willing) and the year to follow will all be cards that June personally picked out for you. June loved cards and would always be buying more new cards. Because of her Alzheimer’s June could not remember that she already had purchased several boxes of cards. Initially this would frustrate me as it seemed such a waste to keep piling up the boxes of cards when we did not need them. I finally concluded that if it made her happy to buy the cards, who am I to deprive her of this pleasure. We have enough cards now for the next few Christmases. So again let me remind you that the cards you receive next year will have been personally picked out for you by June!
Christmas has always been a season that brought great Joy to June. As such she has always wanted to participate in the preparations for Christmas including the sending of the Christmas cards. Unfortunately as her Alzheimer’s progressed so did her difficulty with participation in Christmas. To make the card mailing easier we staged it by sending out 5-6 cards a day. I would try to handle the addressing of cards and June would do the signing of the cards. She would like to write an additional line of greetings. Even this simple chore was very difficult for her and frequently resulted in words misspelled, in the wrong order or just simply inappropriate. Many times she would give up in frustration but would usually want to try again the next day. June was not able to participate in this year’s letter project.
For a great many years our home has traditionally been the family gathering place on Christmas Eve. This hosting of Christmas Eve always involved a big early evening dinner prior to the opening of the Christmas gifts. This preparation was always a “June affair”. However, in 1998 (the year of June’s diagnosis) this hosting of Christmas Eve became too much of a burden for June. When June mashed the traditional candied sweet potatoes in preparation for Christmas Eve in the previous year, we knew something was terribly wrong. Our daughter Julie was kind enough to respond to my request for help and took over the hosting of the Christmas Eve family gathering as she had already done for Thanksgiving. Since that time, June and my participation has simply been one of providing economic help while Julie did all of the work.
Our Christmas tree is a “year around tree.” Since the year 2000, our Christmas tree has stayed up all year. I think June was simply overwhelmed by the idea of taking the tree down. Pastor Harley from our church had advised us that in the old days it was traditional to leave the tree up until Easter. So that year and every year since, Easter has come and gone with our tree remaining up. June did all of the initial trimming of the tree and has added an item or two every year. We have never felt the need to apologize for our “year around Christmas tree” but have explained it to those who were unaware. I think the tree looks very nice. June would always turn on the lights when we would have guests. There is no question but that it gives certain warmth to our living room. We are fortunate that the living room for some reason has no dust in it. We have an electronic air cleaner on our furnace but every other room still has more than ample dust that needs periodic attention. The living room simply has no dust and I have no explanation for it. Although June now has a different residence, I have no intention of taking down our “year around tree” after the Christmas season – at least not in the foreseeable future. I very rarely have guests of any kind anymore, but if anyone should stop by, I would be happy to light up our “year around tree” for you.
As I have already indicated to some of you, June is no longer able to recall her many fond memories of you or your family or of past Christmases. I am sure however, that she has all such memories locked away in a secret chamber of her heart. Some day in another world where there is no Alzheimer’s, these memories will once again spring forth for her enjoyment.
If any of you are able to do so, please stop by “The Wellstead” and visit June. Visiting hours are unlimited. It is easy to find and the directions can be found on the back of the enclosed Wellstead folder. June will not be able to identify you by name but she will recognize you as a friendly face and someone from her life. She will give you a smile and a hug and will be happy that you stopped by.
Our family and I try to be with June as much as possible. I am at the Wellstead for most of the day on Monday, Wednesday, Friday and Sunday. If you stopped by on one of those four days, I would also be happy to see you. Our three children (David, Dan and Julie) cover the other three days. Dan is there on Tuesday evening, Julie on Thursday evening and David on Saturday mornings. I am sure they would also be happy to greet you. Because Susan lives in North Carolina, she is not able to participate in regular visitations. Susan does her best to compensate by sending June weekly colorful cards and notes.
On behalf of June and myself, I wish you a very merry Christmas and a joyous holiday season.
PS: I am also enclosing a picture of June taken at Christmas time in December 1996 before her diagnosis with Alzheimer’s. The Christmas following her diagnosis was almost like a magical Christmas for both of us and the Alzheimer’s gathering storm clouds still seemed so far away.
Notes: 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: