Alzheimer’s: Marriage interrupted

 


I knew something was not right with my husband. My husband, Larry Potter, stopped coming home for lunch in the fall of 2002 after years of habitually coming home at noon from his teaching position at a local state university. I soon was on the lookout for more evidence of problems such as no longer being able to cut the lawn in straight lines with the riding mower or keeping a steady speed going down the road in the car.


Larry, just 61 in 2003 at the time of his diagnosis, suffered from Alzheimer’s. I became his primary caregiver. He was born in Seattle, Washington where his parents, sisters, and all his close relatives lived. This was a trip we both looked forward to making every year, sometimes more than once a year, because we knew Larry’s parents were getting older. Within a few years after his diagnosis it became impossible for him to tolerate the long plane trip from Maine to Washington state and so this was just one more adjustment we had to make.


I had seen and heard about individuals with Alzheimer’s leaving their home or facility and wandering off. In order to minimize this real problem, I prepared for this event by installing 11 dead-end bolts on our home to prevent Larry from simply walking off. It was better to take this precaution than to worry on top of all the other responsibilities that quickly come with becoming a family caregiver for an individual diagnosed with Alzheimer’s.


Speaking Alzheimer’s quickly became a necessity for me. This meant that I often had to simply agree with him or tell a white lie in order to avoid an argument. Two of the first mental faculty affected is judgment and reasoning. It therefore was impossible for me to rely on his judgment and reasoning without questioning every decision or move he wanted to make.


Marriage interrupted ~ too soon


Our marriage seemed perfect from the time we met and fell in love. I had been widowed in the first week of October 1995 and we met not long after that. Larry had just left a difficult 30-year marriage and was ready to find happiness. Both of us had expectations of making this our last love. I often would tell him that he was the purest love I’ll ever know. When we met in 1995, he was ready to love unconditionally. Having the opportunity to care for him with Alzheimer’s meant that I would also have a chance to learn the true meaning of unconditional love. Alzheimer’s does not mean that we are not going to be growing old together. It means that I need to be the one to look out for him and over him now.


Remembering


Because my husband was diagnosed with early onset of Alzheimer’s I had to plan his daily activities along with mine. It really felt as though I was living two lives at once. The most challenging for me was to remember everything for him. His thought process, his ideas, and smallest details we all take for granted. Alzheimer’s has three main stages. When Larry was diagnosed in 2003, he was considered in the first stage of Alzheimer’s but also an early onset of the disease. Early onset refers to the age of the individual who is diagnosed. If a person is diagnosed before age 65, it is considered early onset. He has since progressed into the advanced second stage and is beginning the late stage of his Alzheimer’s.


It was with a great deal of sadness and feeling of loss that I made the decision to place him into a long-term facility when he stopped walking about a year and a half ago. Although research shows that there is no difference between individuals who are kept at home and those individuals who are placed into long-term care, this is always a difficult decision for everyone involved.


Alzheimer’s has been described as a cruel disease because it keeps eroding at the memories. I found myself wishing that each stage would move quickly so he could get over whatever was being taken away from him at that moment, like his awareness of losing his mind and certain abilities. What that really meant was that he would only get into another stage that stole something else from him, like his dignity. This is a progressive disease with no cure. The best we can hope for is medication to slow down the progression from one stage to another, but that is limited as well.


I miss Larry daily. I miss his humor. I miss my husband but am grateful to be able to hold his hand and comfort him when we are together. As the song, As a Mother Holds a Child, by Jude Ippoliti says, “I will hold you in my heart forever, ‘til we meet upon the other side…I will hold you always in my memories…”. That is my promise to my husband.


About the writer:


I found it difficult to begin this journey as a family caregiver for my husband who was diagnosed in 2003 with Alzheimer’s. There was little to no information available, little to no support from professionals and agencies near us in Northern Maine, and little to no family around me to confide in and depend on for moral support.


My paralegal and mental counselling background, my doctoral studies in management, and my hands-on experience as a family caregiver for 10 years at home with my husband has given me a unique perspective. Now that I have partnered with his nursing center as his primary caregiver within that institutional setting and larger team of professional caregivers, I have an even deeper understanding and appreciation of long-term caregiving within the confines of an institution.


The content of www.remembering4you.com is dedicated to all caregivers everywhere and to the institutions who serve individuals with Alzheimer’s and other forms of dementia. The challenge for all of us continues to be able to be even more effective at what we do, caregiving.

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