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Caring for the Caregiver

Losing my father a piece at a time.
by David Jordan

My father is Haven T Jordan, formerly of Yarmouth, Maine. He was born and raised in Yarmouth and attended North Yarmouth Academy. He was the captain of the basketball team, the student council president, and held the state record in the high jump for many years. He joined the US Air Force after high school and was stationed in Europe.He was a military policeman and after getting out of the service he became a police officer in both his home town of Yarmouth and also in Portland for a while. In July of 1959 while off duty he swam to the bottom of Range pond, retrieved a drowning boy from the bottom and saved his life. He worked hard all his life in a variety of jobs and with my mom raised four boys and my sister. He was a wonderful father who would routinely go without to make sure we had everything we needed. I aspire to be half the father he was. I know I never will.

Dad was nearing retirement about eight years ago when a mild stroke blinded him in one eye. Being someone accustomed to staying busy he tried to continue working but it soon became apparent his vision loss effected his driving and eventually had to give it up. He seemed to take it in stride and never let on if it did bother him. He stayed busy rehabbing a house that he and my mother bought in Mexico, Maine.  He worked hour after hour fixing doors, painting, landscaping and even building a deck by himself.  At this point we started noticing changes in Dad’s speech. He would forget words or get lost in what he was saying. At first we thought it was simply his advancing years.  He was frustrated by it and went on long walks often. Dad’s mother and several of his aunts and suffered from Alzheimer’s and I think he was starting to have his own concerns.

 I never saw my father cry, never heard him complain about his lot in life and never ever saw him afraid of anything. Ever. Not even when he first suspected he might have Alzheimer’s did he let on any worries. He even joked that some day he would be able to hide his own Easter eggs.

As his memory got worse the doctors first diagnosed it as Primary Progressive Aphasia. He was slowly losing the ability to understand certain words. Later we learned he was also losing his ability to read and write. I tried to spend as much time with Dad as possible knowing that time was precious. My siblings and I helped him with projects he could no longer handle by himself and we spent many hours driving around listening to stories of his youth or simply walking quietly, stopping now and then to point out the houses of people he grew up with.  Dad saw a host of doctors, all with differing answers and suspected causes. They put him on different medications to try and slow his decline and eventually anti-depressants to stabilize his moods. Dad was an avid sportsman but had given up hunting when his vision worsened. His doctor suggested that it might be a good idea for him to give up his firearms. Dad understood the innuendo and gave them up without complaint as he had surrendered his license years before. 

Physically he was still an impressive man. At 6’2 and 240 pounds he was amazingly solid for a man of his age. When he was 70 years old he was holding a ladder for me while I built a roof for my shed. I leaned too far to the side and the ladder kicked out and I fell. Dad caught me with one arm, the ladder with the other, and put me back on it like I was a small child. Weeks later he cut down a 40 year old apple tree with a hand saw and dug the huge stump out using just his old shovel and axe. His activities would leave him sore and he would often go to see his good friend Dr Pricilla Shea to have his shoulders worked on or his back straightened out.  But more often that not I think Dad just went to visit because he was comfortable with her and all the girls in the office, and by joking and making them all laugh with his antics he could enjoy a moment when he felt a little more normal. 

Things started to go down hill more rapidly about three years ago. His behavior was getting more erratic and his ability to speak was all but gone. The doctors at this point diagnosed his condition as full blown Alzheimer’s disease. They informed us that there was essentially no hope and that we should prepare for the road ahead. We were given a lot to read and spent hours on the internet learning what we could about the disease and trying to come to grips with what would eventually steal Dad from us.

My father’s inability to communicate was a continuing frustration to him. My mother worried more and more about his safety. He tried several times to mow the lawn with the snow blower, and on one occasion used gas from one of his tools to try and strip the paint off an old dresser, getting the gas all over his clothes. He also began to wander more. He would go on walks for hours. Sometimes he would get lost and Mom would have to go searching. Other times she would have to call the police to help find him. On occasion we would hear stories of how he scared someone that didn’t know him, because of his considerable size and inexplicable behavior. He carried a card that explained his condition but didn’t always have the presence of mind to show it.  Mom would be upset when they brought him home but even then he would wipe her tears away and try to tell her that it was alright and he was fine.

Then one day he said goodbye and told her he just had to go. I think he didn’t want to be a burden anymore and he grabbed a satchel and left. Apparently he had enough presence of mind to pack up clothes, a tarp and a few odd belongings and head off down the road. That was the day Mom realized she could not keep him home any longer. It was getting along into the fall, the days were getting short and the nights very cold. Mom called the police for help one last time and Dad went to Mercy Hospital for evaluation for admission to a nursing home.

I do not fault the hospital or the staff but those were some of the hardest days of my life. Going to visit him and seeing him either drugged or restrained in his bed was horrifying. As many people in late stage AD he was losing his ability to sleep through the night and as a result they sedated him to keep him in his bed. When we visited he always asked when we were taking him home and how long he had to be there. When we got up to leave he would try and follow and usually had to be escorted back to his room by security. They learned a lot about Dad. He made it into the stairwell one day. Another day he tore a straight jacket apart. He never hurt anyone but I imagine he scared a few. Most days my family and I were in tears on the way home.

After weeks of being in the hospital Dad was placed in a nursing home in Yarmouth. We visited often and were able to take Dad out on walks around Yarmouth.  We would stop and buy him a coffee and a bagel and then walk him back to the home. He was resistant but most times would go back in. Sometimes he wouldn’t. It soon became apparent that this facility could not house someone of Dad’s size and strength and he was transferred back to the hospital.

Whether due to the disease, the constant confusion inherent to those kinds of surroundings or both, his behavior became more aggressive. I was told by a male nurse on one of my visits that dad had to be restrained again after becoming agitated and hurling bedpans at some of the nurses.  The psychiatrist working with him suggested using ECT treatments, more commonly known as electroshock.  Dad has been treated with electroshock many times since then to keep his behavior in check and to keep him calm. The treatments do stem his aggressive behavior but occasionally leave him listless and virtually unresponsive.

Eventually Dad was accepted at nursing home in Falmouth and he has been living there since. The staff is wonderful and the facility is very nice. I am extremely grateful and I know how lucky we were to get him placed there. In the two years he’s been there it seems like he has aged ten years. He has lost his precious tri-focals that helped him to see with his one good eye, and he lost his false teeth. He walks almost constantly around the building. He has probably lost 60 or 70 pounds and is just the shell of the man he was just a few years ago. It is hard to see him like this and I am always awash in mixed feeling of sadness and guilt when I go to visit. Some days he smiles a lot and I am grateful for those. Other days he wanders continuously or stares at me as if he can’t quite figure out who I am. The last time I felt like he knew me was in the hospital a couple years ago. Dad suddenly got a look of recognition on his face after staring at me for a while and walked over slowly, put his hand on my back and kissed me on the cheek. In a way I think that may have been his last goodbye to me.

I have watched as this disease wreaked havoc on my father and my family as a whole. None of us are the people we were when this all started. I am the youngest of my siblings and I agonize that some day I will have to watch them succumb to AD and watch it strip their beings away piece by piece. And sometimes I wonder if my children will have to watch me crumble apart. I spoke with a good friend who lost his dad to cancer a couple years ago. It was a short but painful death and we talked about that kind of end as opposed to what my father was going through. I sometimes wonder if would have been more painful to lose dad abruptly like that or more slowly. A piece at a time.

Submitted by David Jordan
 

Haven T. Jordan

Photos Courtesy of David Jordan.

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Support for Caring for the Caregiver is provided by:

 

Hospice of Southern MaineMercy VNA Home Health & Hospice Home Instead Senior Care

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