by Bob Hoffmann
1996 Entries - September 25 | October | November 12 | December 15
1997 Journal Entries | 1998 Journal Entries
September 25, 1996
Over the last two months, the most significant change that we have seen in Shirley's condition has been in physical strength and coordination. Shirley moves more slowly on the long walks that we still take daily, and sometimes needs help getting in and out of the car. Shirley has greater difficulty in negotiating stairs, and has had several falls, leading us to take measures to ensure that someone is with her whenever she climbs steps. In one fall several weeks ago, Shirley hit the wall at the bottom of he stairs so hard that she broke through the wallboard. Luckily because of her good overall physical condition, she has escaped these incidents with minor bruises. I continue to rely on the surveillance monitor that I have installed in my office next to my computer to alert me to when she gets up and wants to leave her room, so I can intercept her at the stairs and be with her when she goes down. I have also installed an alarm on the bedroom door as an additional alert, but only activate it when I am away from my office and the monitor. I cannot emphasize enough how valuable this surveillance system has been in relieving the stress and worry I used to have while trying to get work done in my office.
Over the last 6 months I have been collecting handwriting samples as a measure of the progression of this disease. The samples that I have from 6 months ago are still quite nice, as Shirley has always had excellent hand writing (in contrast to me... thank god for computers!). The sample I saved was a note I found on the kitchen table one morning when I got up... "Bob, I'm at work today. Shirley Hoffmann". Given her decline since, it is now hard for me to imagine her still worrying and wanting to go back to work as little as 6 months ago. Then 3 months later, I have handwriting samples (of her signature which is all she would write at that time) which are marginally readable, and I would characterize as unsure and scrawly. Then her handwriting samples from mid-August show that she has lost the skill entirely. She continues to attempt to write her name on a pad of paper we keep for her in the kitchen for this purpose. An occasional letter might be recognized, but only by those that know her name, and most is in "loops" and scribbles. She still presents it in three parts though, for first, middle and last names. The last name has gotten much longer and generally just takes up what space remains to the edge of the paper.
Because of Shirley's thyroid condition (she was diagnosed with Hashimoto's disease two years ago) and the presence of antibodies at work, the specialist we see suggested that we might try steroid therapy. We attempted this through August, giving her high doses of Prednisone for a period of 4 weeks. We did not see any appreciable side effects nor improvements during this period. We then began tapering them off until now we are completed with them. Actually, in the later phases while we were tapering, we did notice some elevated sense of awareness, that we are not sure was a result of coming off the steroids, or could have been a delayed effect. In either case, it was not significant enough to continue the treatment.
During this time period, I was contacted by two researchers regarding the possible effect of amalgam tooth fillings and the release of Mercury vapor into the brain as being a potential cause of some dementia. I was sent several books and research papers and am convinced that this theory is one that needs to be brought into the mainstream. There are a number of people that have been helped by removing their amalgam fillings. I have discussed this topic in more detail in "The Amalgam Controversy and Our Decision" .
Where we are today. We all participated in the Alzheimer's Memory Walk on September 7th in Rochester, and Shirley had 12 friends and family members walking with her. Naturally we all bought T-shirts. Also this month, a young nursing student joined our household and is helping me keep track of Shirley, and gives me respite when I need it. This was arranged through the Share-a-Home program sponsored by the Senior Center. I am optimistic that this situation will aid me in continuing to care for Shirley at home.
Shirley herself continues to be quite happy. We continue to have "amusing" times together and she still laughs a lot. She still recognizes close family members and we believe several friends. Overall, for the point that she is at in this journey, I feel blessed that she seems so happy and satisfied.
October, 1996
This entry was added in January, 1998, to recall the last time I can remember Shirley's spoken word. We went to the County Health Office to get flu shots. We heard that at this office, those with a chronic illness could get flu shots for $8, so we thought we would try it. When we arrived and signed in, the large waiting room was filled. Mostly with younger families with children. We found a place to sit that was right across from a Mexican family consisting of a middle aged couple, a young girl, and her baby. The girl was hugging and rocking the baby in her lap. Immediately when we sat down, Shirley became infatuated with the baby, leaning forward in her seat and smiling broadly. The family smiled back. After we sat there a few minutes, Shirley leaned forward toward the girl and the baby and said very plainly.... "I love you"... They smiled and said back... "I love you too"... those were the last words I remember Shirley ever speaking. As we sat there the Mexican lady leaned forward toward me and asked ".. if that was my daughter?". I said no, and that Shirley was my wife... It was clear that this confused them, as Shirley's actions made her seem and even look younger than she was, and they had assumed she was retarded..
I don't know what was going through her head when said those words... who she thought the baby was or belonged to.. it was clear she was relating to something she remembered, maybe Niki or Rob when they were young.. She continued to stare and smile at the baby until we left to get our shots.
November 12, 1996
During this period, Shirley's condition has been fairly stable, although meals have begun to be more difficult. Mealtime has become an adventure, with Shirley becoming more anxious, jumping up and down during the meal, and having more difficulty swallowing certain foods. She also attempts to get up and walk around while eating. She seems to reject more foods than she has before, and this has carried over to taking her pills. She has lost several pounds during this period. I now affectionately characterize mealtimes as "The chase is on!". We have had to make several adjustments to accommodate this new behavior.
For the most part, I have had to quit trying to eat meals with Shirley. Instead, I focus on helping her to eat and then take my turn later. Because of the anxious behavior, there were lots of spills and I was having difficulty keeping her clothes cleaned. So her mother made her several aprons which have been a big help, and which Shirley enjoys wearing (in contrast to the lap towels I used previously). I also went out and purchased several more cotton warm up suits that were inexpensive and easy to wash.
I have adjusted our menu to include softer foods. I switched to hot cereal for breakfast, and soups, canned fruit, and yogurt as part of other meals. I have also stocked up on apple sauce and use it to supplement most meals and to hide the pills which I now cut up into very small pieces. All of this has seemed to work well, as she has stopped losing weight and seems happier at meal time.
Her poor sense of equilibrium still keeps us on our toes as we have caught her beginning to fall on the stairs several times. This has reinforced our conviction to make sure she is not ever alone on any stairs or steps. Of particular concern has been the basement steps. To address that problem, I installed a "child proof" door knob cover manufactured by Safety 1st. It is plastic and fits over the basement door knob with an accordion type design so it must be squeezed tight together to grip the knob and open the door. I tested it and had difficulty the first few times myself. Shirley finally discovered it one day and attempted several times unsuccessfully to open the door. This led to some yelling and pounding on the door, but after a second try, she no longer attempts to open the door. A set of three door knob covers cost about $1.75.
Also during this period, I started Shirley on some Raw Thyroid tablets that you can purchase at a heath store. Because of Shirley's thyroid problem that started concurrently with the Alzheimer's diagnosis, it was recommended to me by a research professional that I try these. I delayed starting her on them until after she was completely phased off of the steroids (Prednisone) that we tried in August. She has been taking them for about a week now, and I will continue them until they are gone. So far I have not seen any change from taking the tablets. She also continues to take the synthroid which is prescribed by her physician.
We were interviewed for a newspaper article that ran in the Rochester Post-Bulletin on October 28th, bringing attention to early onset Alzheimer's victims and how I have coped through the establishment of this Web site. The article was sensitive and well written by the reporter with appropriate pictures. The article also brought attention to the annual Mayo Clinic AD conference that was held the following Saturday. We have received a warm response in the form of telephone calls and letters since the article ran.
Although we have had some additional challenges, Shirley remains quite happy and well overall. Our Share-a-Home person did not work out and left. We are not looking forward to the isolation caused by being cooped up for the long cold Minnesota winter, and will need to find some activities for these next months to ensure that Shirley gets adequate exercise.
December 15, 1996
Shirley seems to have become weaker, and less stable over the last couple months. I have also noticed a more frequent tremor in her lower jaw. I left her in the family room for about 90 seconds while I ran to the mail box, and upon returning I heard the crash! She had made it to the stairs and about halfway up in that 90 seconds, and then fell. She was sitting at the bottom of the stairs with her back against the wall where the wall board is broken from a previous fall. Although the stairs is heavily carpeted, this time she seemed to hurt herself and had difficulty standing. I called my son who is an RN, and the two of us checked her over and found no signs of serious injury. We gave her Advil and decided to just watch her carefully for the next 24 hours. She had great difficulty walking or standing for the first day, but improved the second day, and was back to her old self by the end of the week.
This fall was another wake up call, helping me to recognize that I could no longer leave her alone unobserved for even a few seconds. I made two adjustments to tighten up safety. I bought an expansion gate and put it at the bottom of the stairway.. Since there is one step below where the railing begins, I had to put the gate on the second step. Then I watched Shirley approach it and try to climb up the first step hanging onto the gate and almost falling on her back. So... I experimented and was able to put the gate at an angle laying across the first step and only being wedged in at the top. This has seemed to work, as she does not have the strength to move the gate nor climb over it. This allows her to wander about the first floor of the house without us worrying about her climbing the stairs. When she goes to the stairs, I would say "the door is closed.. come back and sit with me". After several times, she now goes and upon seeing the gate returns to the family room.
She had not had difficulty coming down the stairs before, but with her condition weakening I did not want to risk her finding her way to the top of the stairs from her bedroom without me being there. I installed another child proof door knob cover on the inside of our bedroom door so she could not open it to get out. This has worked fine and now prevents her from getting to the stairs without someone with her. It allows me to get into the shower, or do work in my upstairs office, without worrying about her beating me to the door and the stairs before I can get to her. When she does go to the door and finds the knob, she will attempt it and get frustrated and then pound on the door. Not wanting her to feel confined, I never let her pound on the door very long before going and opening it or returning her to her bed.
She had a birthday this month and turned 53. Last year she was very excited about her birthday which was held at a friend's house with about 8 other couples. At that birthday she could not wait to cut the cake, and when people would come up and say "Happy Birthday Shirley!" she would respond "Happy birthday to you!". She sat with the group and opened their presents and cards very slowly, smiling and occasionally saying "thank you". She would hold each present in her lap giggling and say "I hope its candy". When one package turned out to be candy, she was very excited and stopped to dig into it. Her friends were all saying "geez, I wish I had brought her candy!".
This birthday was different. Her friends wanted to do something and we agreed that it must be a simple noon time lunch at our house without the men. The family (Niki, Rob, and I) had a small celebration a day earlier since Niki had to return to school and Rob had to work. We all gave her birthday cards to open and we had a cake. She did not seem to know what to do with the cards, so I would open and read them to her... she would then take them and bang them on the table. Then when we got to Rob's card and I opened and showed it to her, she took it and went to the kitchen sink and stuffed it down the garbage disposal.... She has a tendency to put things down the garbage disposal these days. Then we opened my birthday card, which made a shrill "wolf whistle", and she grinned broadly and proceeded to open and close the card.
The celebration with her friends went well. She was dressed up in one of her nice knit outfits and was happy to be with everyone. We ate pizza and cake (she made motions toward blowing out the candles, but nothing came out), and opened the presents. She did not respond to the cards or presents until we got to one that was full of bags of candy. She recognized the M&Ms and quickly dug that bag out and attempted to open it. I guess some things are never lost.
Shirley appears not to be eating as much as before and has lost interest in a number of foods. I have begun to supplement her meals with a drink made from putting an apple, banana, orange, carrot, orange juice and a cup of yogurt in the blender. She drinks it quite readily. I have also purchased straws and found that she drinks much better and more that way. I wanted to ensure that she was getting enough liquids during the winter.
She continues to be quite happy, but is spending more time in bed, as it is becoming harder to find things to keep her up and she tires easily. We have been blessed with a new volunteer that comes once a week to allow me to get out to exercise and do some shopping. Shirley's friends also continue to come to allow me to attend support group meetings.. We plan Christmas with her Mother and other family in Illinois again this year. This has been a tradition, but will probably be the last year we will be able to do it....
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