The “D” Word

Jane Roberts around 1999
Jane Roberts around 1999

In 1999, recently arrived in Los Angeles from her little town of Wolfeboro New Hampshire, my mom was diagnosed during the first visit with her new doctor with dementia. Where a diagnosis of cancer used to be feared by many as an automatic death sentence, today many people, including my partner Sally are “cancer survivors”. But today for many, the most fearful diagnosis is one of “Alzheimer’s” or “dementia”. To date I have not encountered anyone introducing themselves as an “Alzheimer’s” or “dementia survivor”. How can a person (or their loved ones) come to grips with “losing their mind”? What is more precious and irreplaceable to us than our memories and our personality?

A few years after my dad’s death in 1984, my mom was diagnosed with an atrial fibrillation, which was causing her heart to not pump blood properly. What had provoked this condition was never confirmed, but her doctor suspected that it had been some sort of virus that had attacked and damaged the muscles of, and maybe physically reflecting perhaps the metaphoric “breaking” of, her heart, after a lifetime struggle with self esteem, lacking the love of her own mother, and never finding the kind of loving relationship with a man that she continued to long for.

My mom had led a life of good health but also continued to have a general ignorance about issues of body and health, and was very uncomfortable about visiting doctors and spending time in hospitals. It was a blessing (to the extent that information about issues with ones health is truly helpful and not doubly debilitating) that when she moved to the little town of Wolfeboro New Hampshire, after my dad’s death, that she found a female physician who she really connected with on a personal level, and who diagnosed her heart ailment.

At first, my mom’s doctor and the local community hospital’s heart specialist were successful correcting the condition with drugs, and my mom could go for months at a time before the condition would reassert itself and require additional treatment. After several years of this, the drugs became ineffective and she was sent to the medical center at Dartmouth University for electric shock treatments to convert her heart back to a healthy rhythm. At first successful, eventually these treatments became ineffective as well and there was nothing else in her doctors’ toolkit to cure her weakened heart.

I was not medically sophisticated enough to understand the impact this could have on the blood flow to my mom’s brain. If her doctor had shared this possibility with her, I don’t think my mom would have been willing to acknowledge or accept it herself, let alone share it with me.

My entire life my mom had never been satisfied with her circumstances, and always longed for something better than her current lot. Maybe that was her motivation, or maybe she sensed at some level what was coming, when she began suggesting on the phone to Sally and I that after fifteen years in her little summer resort town of Wolfeboro that maybe she should move. She suggested that if we were willing to sell our current small house and buy a new one with a pool and a guesthouse, she would move out and live with us in Los Angeles and pay “rent” to help us pay the bigger mortgage.

If it had been a “bluff” to blow off steam, as the new focal point for her seeming perpetual dissatisfaction with her life, Sally and I called that bluff. We found and bought a bigger house with a cute little guesthouse and a big pool suitable for swimming laps (which my mom did for exercise in the summer). When I shared the news with her on the phone she was excited and said that she would start the preparations to move.

Even though she was a right-brained artistic type, my mom had always been very capable at logistical projects, making her lists of tasks and not shy to reach out to the people she needed to make whatever project happen and think outside the box to overcome problems encountered along the way. Her sister Pat was willing to pay to hire a top-notch moving company that would handle everything, including shipping my mom’s beloved 1986 Volvo sedan. But from the beginning of this project, she struggled uncharacteristically with every step, and the move date kept getting pushed back. Finally her nephew Mark (Pat’s son and my cousin) and his partner Gina volunteered to help, and the two of them in the course of a couple weeks managed to organize and pack all the boxes and otherwise prepare my mom for the movers.

Having overcome her fear of flying just a few years earlier, my mom flew out to Los Angeles by herself. I can still remember the big grin on her round face when we met her at the gate. She seemed a bit more overwhelmed and compliant than I would have expected, but then she was older now and it was a huge change coming from her quaint little Yankee town to one of the biggest most diverse cities in the world. A week later the big truck came with her furniture, boxes and her Volvo sedan and she supervised the movers arranging the furniture in her new guesthouse, and launched into the process of unpacking all those boxes and arranging her stuff, which felt more true to her form.

We had hoped she would maintain her independence by being able to drive herself around to attend classes, join groups and visit new friends, things she things she talked about doing routinely back in Wolfeboro. But from her first day in Los Angeles she was intimidated by the size and complexity of the streets and the amount and speed of the traffic. As cars sped by our car with her as a passenger, she would curse the driver and express her anger that there were no police anywhere to pull them over and write them a ticket.

Though she let me, and later her grandkids, drive her Volvo, she never once was willing to get behind the wheel herself. I was concerned with this situation, and hoped I could eventually ease her into driving, which seemed critical to giving her the opportunity to build her own independent life in her new city. I drew her maps of the streets in our neighborhood indicating the local grocery store, drug store, gas stations, etc. She continued to curse the traffic, the dearth of police cars, and refused to drive. Little did I know initially that this would turn out to be a blessing of sorts.

After a month or so from her arrival, we were fortunate to hook her up with a relatively young male doctor with the gregarious personality to make an immediate connection with her. It was at the end of her very first office visit that he let both her and I know that based on her heart issues and his examination, that in his opinion she had the beginning signs of vascular dementia. To my mom and the intellectual powerhouse she had once been, her diagnosis carried with it such profound fear that she could only deal with it by denial. When I tried to discuss the issue further on the way home from the doctor’s, my mom glared at me and told me candidly that she could not deal with the thought of “losing her mind” and so she did not want to talk about it again.

I don’t think Sally and I fully comprehended at this point what was ahead of us, hosting my mom afflicted with that dreaded “D” word for the last chapter of her life. But we realized that ironically, just as our kids were becoming more independent and needing less of our attention and care, my mom would more and more require us to be caregivers again, including eventually dealing with baths and bodily functions, and other such tasks we thought were behind us. It seemed best to not think too far ahead about what was in store, and instead take things one day at a time. Based on increasing stories in the media and anecdotes from family and friends, we also knew we were not alone in having to face this sort of a challenge.

I knew that maintaining a good relationship with my mom had been at times challenging for my partner Sally in the past. My mom, though always a caring person, could be opinionated and overly dramatic about her passions and concerns, maybe not too far from Bea Arthur’s iconic “Maude” character from that 1970s TV comedy of the same name. Now with the dementia thrown in, possibly exacerbating these traits and limiting my mom’s sensitivity to others, I contemplated some initial concerns that she could cause issues between Sally and me. Certainly Sally had not explicitly signed up for intimately caring for my mom when we agreed to marry.

I vowed to myself that if it ever managed to come down to (though hopefully not) the interest of my relationship with Sally versus the relationship with my mom, my relationship with my spouse would take precedence. It has always been important for me to establish those kinds of principles in my own mind to help me make decisions when things get complicated or quick action is required. It then allows me to relax and better live in the moment and not sweat the “what ifs”.

I must say that I shared my concerns with Sally, if maybe indirectly, and was quickly assuaged not to worry. I was reminded again that she and I were partners to the core, extending even beyond this life if you believe in such things. That felt right to me, since in Golden Rule terms, I would certainly do the same if the shoe were on the other foot and it was her mom or dad that needed our loving care.

(See the next installment)

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