I hope this book will remind us what a kind, sweet, considerate and compassionate person Jim was. Thank you to my family for being the thoughtful, caring people you are. And to Jim's friends, a special thank you. I could not have survived without your help and inspiration. His life was cut short much too soon.
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Jum & Muz I Forget - A Care Givers View Of Alzheimers Alzheimers has been called the cruel disease. This is true.
It sneaks into the brain and steals the dignity, memory and sense of self of the person affected. It begins with a small insidious loss of memory, maybe misplacing keys. Wondering, why did I go into a particular room? What was the reason to enter that room, what did I need, what did I come here for. Unease and frustration is an early sign. At first, maybe it's just the thought that this is a (so-called) senior moment.
Everybody has those. It's very scary to feel like your memory is slipping and you can't think as clearly as you once did. This is the story of my husband, James and his gradual descent into the oblivion and the unforgiving grip of Alzheimers and the devastation it caused to our family, but especially to him. We lived it.
My husband was a thoughtful, brilliant man. He had a great sense of humor and enjoyed a good joke and loved to tell stories to make people laugh. He had an unbelievable store of limericks, I'm sure, some he made up himself. Jim was a people person in the best sense of the word. His thoughtfulness was apparent, especially with children and dogs. He enjoyed a game of solitaire that he invented, because he said the regular game was boring. He read everything and anything. He could quote poetry or a line from a book to cover any situation. His mental acuity was truly outstanding. But over the course of about twenty years his mind gradually retreated behind a cloud of panic, frustration, uncertainty and debilitating worry.
I think the most devastating part of dealing with someone suffering with Alzheimers - is not knowing - what will happen next and when. The gradual change in personality that flashes back and forth. The bewilderment of the person affected is, I think the most heart-breaking part of the disease. You feel such sympathy but there is really nothing you can do except try to cope each day. The progression of the disease is insidious and the sense of isolation and loneliness is sometimes overwhelming. As a care-giver it's a burden you carry alone.
A friend once asked me how I stayed in a marriage with such a problem. I guess my first thought was shock that someone could think that way. If you care about someone you don't abandon them if the going gets rough. I thought about how, each day, as the disease progressed there was another reminder of the loss of our memories together, our shared memories. I read somewhere that Alzheimers has been called "The Long Goodbye". That is an apt statement of fact.
The isolation can be overwhelming if you let it. You need to have a support system. I didn't realize this at first and I tried to handle the problems and incidents alone. I didn't ask for help. My children were scattered to other places and I don't think I told them early on and if they didn't see him often they probably wouldn't notice the changes. But in the later stage they were helpful.
I didn't know what was happening for quite a few years and I didn't investigate options until much later as the disease was further along. I hadn't been familiar with Alzheimers and finally did some research but not until it became obvious that something was wrong. The symptoms quite often go unnoticed until the disease has advanced significantly.
The changes were minuscule at first and were few and far between. Because the episodes were so irregular and sometimes months would pass I didn't always notice a change in behavior or activity. I thought he was tired, and attributed it to the long hours on a freight train. He was a locomotive engineer on the Great Northern Railroad. He was absentminded occasionally but that wasn't anything to worry about. We all have those moments, you see. The occasional flashes of anger were easily understood. But, he was not an angry person so I speculated about what had upset him and how I could fix it. I was successful some of the time.
I think it's necessary to present some background of Jim and our family to better understand the circumstances of dealing with the effects of Alzheimers. I was twelve when my parents were divorced. My bother was the oldest and already married and three older sisters stayed with Dad.
My mother remarried and along with my two youngest sisters, we moved to the Big Mountain in Montana on the turnoff toward the Whitefish Lookout. It was a log cabin, very rudimentary with one big room and a loft, located on 160 acres, part of the original homestead.
Without electricity we used kerosene lanterns for lights. We didn't have running water but there was a spring about 50 feet from the house. My step-dad installed a hand pump and a barrel to catch the water so it wasn't as inconvenient as it sounds. However we did have to heat water for dishes or washing clothes which was a pain. My mother groused about the three of us not helping enough, but we were kids and had to be reminded.
Jim was born in Whitefish in 1926 and grew up on the lake side of town. He had three older sisters, Shirley and the twins. He loved fishing and during the depression he sometimes supplied dinner for the family because his father (Jay) was out of work. With Whitefish beginning to recover from the depression his father was hired back as a Locomotive Engineer on the Great Northern Railroad. In 1938 when the Lakeside school burned to the ground Great Northern officials provided a railroad car as a classroom while a new school was under construction.
(Jim – right side row - 3rd up boy with blond hair, white shirt) A group of Lakeside boys had a running feud with the town kids. He told me they made slingshots out of old rubber tires and had wars shooting rocks at each other. It's amazing that no-one was seriously injured. An older boy lived across the street. Hugh was the unofficial leader of Jim and the boys (Rex, Larry and Harold) and he looked out for them and kept them out of trouble. Jim was an excellent student, but he seldom talked about his school years. He was awarded the Degree of Merit from the National Forensics League in 1942. Following graduation from High School Jim immediately joined the Navy. Boot camp training was at Farragut, a base near the small town of Sandpoint, Idaho.
Returning to Whitefish following discharge from the Navy Jim attended the University at Missoula on the GI Bill. He changed his major several times. He was struggling to make up his mind about what he wanted to do and thought teaching might be of interest. He thought he was wasting his time until he could decide, so he didn't go back after the second year.
Although I didn't know it at the time, I first encountered Jim when my sisters and I walked down a back road. The road down the mountain was an old wagon trail, mostly ruts and rocks. We went a few times a week to get milk from a dairy farmer, a mile or so from our cabin. We took Jinks, our dog, with us because Mom was worried about bears. It was probably a legitimate worry but we couldn't have cared less and pooh-poohed the idea.
Jim told me years later about seeing us one day. He said he was returning from a fishing trip and he saw one of the three of us drinking from the jug with milk dribbling down her chin. That summer was unbearably hot and my sister, Helen always drank some of the milk before we arrived back at the house. Our mother's scolding had no effect. Helen continued to do it even when I reminded her she was going to get a good talking-to. I guess she figured it was worth it because she always pushed to the edge. Not just the milk issue but almost everything she did and she hasn't changed in the years since.
In 1946 my parents traded the house on the mountain for a house in Whitefish a half block from the lake. This was a huge change. We now had running water, a bathroom, a telephone and electricity. I guess we were used to adversity; because it was a three mile walk to school. This wasn't considered a problem. Even after-school activities required us to walk if we wanted to be involved. However, I didn't have time for anything extra at school. My only school endeavor was reporter for the school paper. I worked an hour every afternoon in the Superintendent's office during my Junior and Senior years.
My Sophomore year the Commercial Class teacher recommended me to the manager of the Pacific Power Company. I was hired and began work as a telephone operator. My shift was every day after school from 4 to 8 p.m. and 8 hours on Saturday and Sunday. I walked the three miles to and from the telephone building. My starting wage was 34 cents an hour and when I quit five and a half years later I was making a dollar and ten cents an hour.
Looking back I missed a lot of the fun things of school such as football and basketball games and other school activities. I attended only one prom my Junior year. During summer months I worked a 40 hour week until school began in the fall. I graduated from High School in the spring of 1949 and my employment with the power company was increased to full-time.
One afternoon I was invited to a movie with a friend who lived next door. He said a pal of his would meet us with his date. The guys were home for the weekend from the University at Missoula. We were introduced and I was surprised when Jim said, "I've already met you." I found this to be a rather strange statement because I had not seen him prior to that day. The subject was changed before he could elaborate. It wasn't until much later he told me about seeing us on the mountain road with the milk jug. It was a strange thing to remember, I thought, but interesting, nevertheless.
He was six feet tall and rather skinny. The first thing I noticed about him was the piercing blue of his eyes. They held your gaze so you couldn't look away. Throughout that summer we went on several double dates. I discovered Jim lived on the end of the block from my house. It seems odd that we had not crossed paths before.
One day in late summer I was at the post office and Jim came in as I was leaving. We chatted a few minutes, mostly small talk about the heat and the forest fires and if the weather would ever change. The hot, dry weather had created a tinderbox and the whole state seemed to be on fire. Smoke and haze drifted in a low cloud, adding to the intensity of the heat.
He invited me for coffee and we sat for several hours reminiscing about the summer discussions and the various movies we had seen. He called the next day and we met again for coffee. We spent occasional afternoons at the lake. After a quick swim we enjoyed lounging in the sun. Whenever we were at the beach our dog came along. If we were in the water Jinks guarded the towels. He started doing this when my sisters went to the lake. We hadn't told him to stay, he just seemed to know it was his job.
Jim and I went on long walks talking about everything; movies, books, the galaxy, authors we liked or didn't like, but mostly just enjoying each others company. Working the midnight shift (which sometimes happened) trying to stay awake; always dead silence and boring. I mentioned this to Jim and he called in one night. Thereafter those midnight talks helped to pass time.
After several dates we thought we should tell his friend of our interest in each other. It was becoming much more than just friends. As we got to know each other I realized he had a keen intelligence and a warm, appealing manner. He was outgoing and never condescending. We discussed friends, our families, our plans for the future, everything.
One of the incidents Jim told me was about his sister, Shirley. On a weekend home from the University Shirley and a friend painted his Model A lavender. After I met Shirley and we became friends she told me about how sorry they were. Jim was visibly upset with them and Shirley said it wasn't as funny as they thought it would be. They agreed to repaint it black. Later Jim sold the car when he needed money. He told me selling it was probably a dumb idea, because we could have used a car.
During our long talks he told me about the crazy things they did as kids. He said all the boys started smoking. He had his first cigarette when he was eight years old, a habit that continued off and on until he was in his sixties. I'm convinced the smoking added to breathing problems and he was diagnosed with Emphysema. The diesel smoke from the locomotives contributed, as well. I'm not proud of it but I nagged him to quit smoking. Eventually he did, but only after years of stopping and starting again and again. Of course, smoking was an additional health issue we coped with, because the Emphysema grew worse as time passed.
The labored breathing probably limited him physically to a certain extent. To me, it seems reasonable that a causal relationship exists. Regular physical activity increases oxygen to the brain, which in turn, supports better cognitive performance. However, it was many years before the Emphysema began to limit his activity, forcing him to walk more slowly and caused him to stop often to catch his breath.
I noticed a lack of interest occasionally in things he enjoyed. Apathy may mean the brain is changing and a lack of interest and energy may signal a drop in brain activity. Episodic memory is the type that typically diminishes – the ability to remember specific events. The Hippocampus is the brain area that usually shrinks in people with Alzheimers. Studies are underway to find how to help preserve it
We were married later that year. My family had moved to Sandpoint and Jim and I borrowed his parent's car. It was a very simple wedding; Helen and a family friend. Mom baked and decorated a cake and Charlotte, my youngest sister, served. My step-father was visibly moved which was surprising. I didn't realize he was so emotional. But thinking about his reaction, I remember his anguish when his son's ashes were delivered by two marines. His son died in the Bataan death march during the war. Not the same of course, but emotional nevertheless. A few tears amid hugs all around.
Leaving, the car broke down while we were driving toward Spokane. A fish salesman with a freezer van stopped to offer help. He drove us to our reservation. When told we were just married he offered a bottle of champagne. I told him I wasn't old enough to drink and he said flowers would work. A really nice, thoughtful guy. I don't remember what was wrong with the car, maybe out of gas.
Back at Whitefish we had to think about our future, instead of just dreaming. We considered various ideas trying to decide what we wanted to do. We were drifting and our options seemed limited but we were young and in love. The world was our oyster, so to speak. However, our optimism and spirit of discovery could not foretell the coming events that would change everything. Throughout the trials, tribulations and turmoil, our life together lasted fifty-one years.CHAPTER 2
The first year of our marriage we rented a small furnished apartment in downtown Whitefish. I continued to work at the Telephone Company and Jim spent that summer piling brush for the Forest Service. We were still considering various options. We had discussed our ideas and plans before but we had to get serious about what our future would be. The pros and cons of staying in Whitefish made that future seem rather bleak.
Following those discussions, going back to the University seemed to be the best option. Having decided Jim should go back to school, I quit my job and we moved to Billings. Our only possessions were clothes and a few books, so it was an easy move by bus. It was scary though. We didn't have money enough to last more than a few weeks so our circumstances could have been dire. But we were looking forward.
Jim enrolled at the University specializing in teacher training. He reactivated the G I Bill available to Veterans. He served during World War II on a yard mine-sweeper in the South Pacific. Our plan was for him to continue toward a degree in Education he had begun while at Missoula. Because money was in short supply, he was also working part-time as an orderly at the Catholic Hospital. I was expecting our baby so I wasn't looking for work. We thought if we scrimped we could get by okay and we did for the most part. We were both products of the depression so we were learning how to conserve. But learning how to make the money last through the end of the month took some trial and error. Laughter was a saving grace and we laughed a lot. Better to laugh than complain.(Continues…)
Excerpted from "Jum & muz"
Copyright © 2016 Mary Ellen Connelly.
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