I recently spent time with my mother in law…4 1/2 hours to be exact. Other than sitting beside my own mother in her hospital room before she passed away almost 20 years ago, these were quite possibly the longest hours of my life. You see, my mother in law has dementia and I was actually ‘adult sitting’ her in my husband’s absence; she is no longer able to be at home without supervision.
As is often the case with Dementia or Alzheimers, the more recent memories are the first to leave the mind. Most of the time, she seems to be hovering at about 12 years loss…but when she becomes agitated, it goes back much farther than that. A few weeks ago, her husband was out of state and she was so confused she referred to Steve as her brother. She also occasionally asks to be taken home when she is already home, if there are several people in her house and she becomes overwhelmed.
My heart bleeds for Steve and his siblings. Their mother (Joan) was a very strong and independent woman in her time. During an era when women didn’t divorce or work outside the home, she divorced an abusive husband and got a job to support her children. When Steve’s wife died, Joan filled in with his kids as their substitute mother. When his brother went through a divorce, she mended his heart with home made dinners and family gatherings. When one of her grandchildren unexpectedly had a child out of wedlock, Joan made herself available to help babysit anytime needed so the new mommy could finish college. She worked fiercely for her family her entire life.
This is not to say she was without her faults. Although she put on a good game face, she did not warmly welcome me into her family. She was born and raised in small town Pennsylvania too–you know, the one that hated outsiders; plus she loved Steve’s first wife and didn’t really see the need to add another woman into the family. In hindsight, I think she may also have had reservations about whether I was going to stick around. I made no secret about that fact that I was languishing in her judgmental little town.
But, as time passed, we each adjusted and compromise and developed a working relationship. I’d like to believe that Joan learned to love me, but I’m pretty sure that is wishful thinking. However, at the very least, I do think she learned to respect me through witnessing the love I have for her son and grandchildren. A relationship based upon respect is no small feat, and in my own motherless state, I would have accepted a relationship with her on pretty much any terms.
The Dementia began about 5 years ago. I clearly remember going to her house and being welcomed with such warmth and enthusiasm that I said to my husband, “Oh my gosh, your mother forgot that she hates me!” Of course I was joking, because I don’t think she ever really hated me. I literally reveled in the new tenderness she displayed toward me. I had prayed for that for years. I thought everything was finally going to be good–and it was worth the wait. Little did I know that my careless words were true. She had indeed forgotten.
The continual decline of her mental faculties is so heartbreaking. I realize nobody deserves it, but she really doesn’t deserve it. Her children and her husband all love her very much. They do everything they can to make her comfortable at home, where she is the most familiar with her surroundings. Everyone, including her husband’s 8 children, rotates weekends of responsibility when they clean and cook for them. My husband, Steve, spends each Monday with her to give her husband a much needed break. It has been a real team effort to provide for her welfare with the love and respect she deserves. I am so touched by the compassion with which they all handle the situation.
I have been hesitant to join in. Fourteen years of sitting in the wings, being almost welcome, but not really, has made me very ill at ease to step forward. Believe me, it is not for lack of wanting to help, because it is my nature to take care of and fix people; but rather it is my desire not to make waves in an already difficult situation. So, for my part, I fully support my husband in the time he spends with her and kept the low profile I’ve become accustomed to keeping.
But, on the day I spent 4 1/2 hours with her, my husband had a prior commitment so it seemed like an excellent opportunity to help out. I confess, I was excited. I jumped at the opportunity. Unfortunately, it was not a success. Poor Joan was so confused as to why I wouldn’t leave. At one point, she actually asked me, “When are you going to leave?” When I began to make dinner (I had bought crab cakes because they were her favorite and I imagined us having this lovely little dinner together), she demanded to know “what the hell are you doing rummaging through my cabinets?” When dinner was set out on the table, she refused to eat with me, saying, “I guarantee I’m not eating without my family here.” Knife in my heart, even though she didn’t mean to hurt me. Bottom line, though she still recognizes my face, she doesn’t remember having any relationship with me. I should have stuck with my first instinct.
So, since that day, I have been scanning my brain for a way to help out in some way. Low and behold, today I figured out what that could be. I was at the Writer’s Center taking a class on ‘Writing the Family Memoir’ by Cheryl Aubin. I had originally signed up for this class to begin writing my own family memoir–to leave behind something for my children and grandchildren when I’m gone. Joan’s Dementia has inspired me to write it while I still remember it. But, while I was sitting in the class, an inspiration came to me. I need to write Joan’s story. A life well lived deserves to be well remembered. She has all of her older memories, and her family can fill in the newer ones.
In the end, regardless of our longevity of life, all we have is our memories…which eventually will begin to fade from our minds too. So, if you know or love someone with Dementia or Alzheimers—or even someone with a terminal illness—start taking notes when they talk about their life. Those words will one day be all that remains of a life well lived.
“We’re really a composite of our life experiences–memory layered upon memory–and Alzheimers steals that away.” Meryl Comer