If there is one thing that I’ve learned in my 40 years on this Earth, it is that there are plenty of lessons to be learned, wisdom and knowledge to attain, perspective to grab onto. We often learn lessons through hardship and pain, probably because that really gets our attention. The choice we get to make is how open we will be to those lessons, to understanding more and to shifting our perspective. Like anyone going through an Alzheimer’s diagnosis of a family member, I learned my fair share of lessons. And I am likely a different person after losing my dad.
My dad was diagnosed with Alzheimer’s Disease in January 2015. My dad was a very private man, and he did not share this diagnosis with his children (my brother and I) right away. In fact, the first time I got a whiff of something off was when I found the remnants of whatever nutritional supplement he was taking for the disease in my trash can. “Used in the treatment of Alzheimer’s disease”. Yikes. My dad wasn’t that old. How is this possible? He just turned 70, he exercises 5 days/week, eats well, stretches, maintains his strength through weightlifting, does the daily crossword and reads more than anyone I know. How can MY DAD have this horrible disease?
To tell you the truth, I can’t really remember when he actually told us. It was probably my stepmom who told us. It was quite rare that we ever spoke about the diagnosis directly. He was a bit embarrassed by it, as if he had done something to contract it himself. He could not accept the idea that his brain was degenerating, that he was unable to think the way he used to. You see, my dad’s ability to think and reason was very important to him. With an undergrad in psychology, he entered polygraph school in his mid-twenties. After working for other people for many years, he started his own polygraph business a few years before I was born. The business took a turn when polygraph validity came under fire in the 1980s. In 1981, a court ruling made polygraph reporting inadmissible as evidence in trial cases. In 1988, the Employee Polygraph Protection Act restricted the use of pre-employment polygraph examinations. My dad’s main business had come under fire and he began to develop other ways to help businesses with pre-employment and internal loss assessment. He went onto develop multiple questionnaires that would evaluate the employees and the likelihood of misconduct. My dad was so proud of this work. I remember him marketing himself through mailers, writing articles for trade magazines, and speaking at trade shows. He even wrote two books to further promote his work and passion. He was a true entrepreneur who believed in the work he was doing and benefit to the businesses he worked with. He never would have retired if this disease did not force his hand. And he fought it every step of the way.
As the disease progressed rapidly, my dad had a harder and harder time reading, a pastime that he loved. He would stay on the same few pages for hours. He wanted to desperately to revise his questionnaires and start marketing them again. He would make markings on the questionnaires that didn’t make any sense to anyone else. He would sit for a good part of the day reading them and marking them. It was almost like a security blanket for him.
I would spend Wednesday mornings with my dad so that my stepmom could get out and run errands without him. He never liked running errands, and as the disease progressed, he liked it even less. My Wednesdays were a sweet time with my dad. Here comes Lesson #1: Be in the moment. I never was so in the moment than on those Wednesday mornings. We would walk together, slowly, and enjoy the Florida scenery and weather. We walked because he couldn’t run and walk on the treadmill anymore. And he couldn’t attend the fitness classes anymore because he couldn’t follow the directions and keep up. So we would sit and talk and he would painstakingly tell me stories of his childhood, with tears in his eyes. Alzheimer’s made my dad much more emotional than he had ever been in his life. The mere thought of his parents (both of whom died with dementia in their 90s), would cause the tears to well up in his eyes. He recounted stories from the football field and basketball games, stories of his friends and classmates and their high school and post high school experiences. As he told these stories, I had to be so focused. You see, one of the major symptoms of his Alzheimer’s disease was aphasia. He lost the ability to adequately communicate what he wanted to say. It would often take him an hour to tell a simple story because he couldn’t remember all of the words. It was so hard to watch him; knowing what he wanted to say but not being able to say it. Sometimes that frustrated him, sometimes he didn’t realize it. And as a daughter, do you insert the missing word or let him struggle? Ugh, so many questions I had back then. I tried so hard just to stay in the moment with him, laugh and cry together, hold hands and show affection. My father showed me more affection in the last 2 years of his life than he had in his entire life before. Lesson #2: Look for the blessings.
Within a year and a half of his diagnosis, my dad had developed Sundowners Syndrome. He became particularly disoriented and agitated in the evenings. And eventually he began getting up more frequently in the middle of the night, leaving refrigerator doors open, roaming the house and bumping into things. As it progressed, it seemed that he was up all night and would sleep a good bit of the day. A cervical disc surgery in late 2016 seemed to accelerate the progression of the disease, as anesthesia can often do in Alzheimer’s patients. He was in so much pain that the surgery was necessary. But unfortunately the doctor nor anesthesiologist went over the possible implications to the disease that anesthesia could cause.
Lesson #3: Don’t be afraid to advocate for your loved one. We assumed that all of these things would be explained to us. What we have come to realize is that very little will be explained and you must ask, research and ask again. The Sundowners could have been majorly impacted or even triggered by the surgery. We had no idea of that possibility and the extreme stress that would come from Sundowners syndrome. His night walking became so severe that my stepmom did not feel that she could keep him safe at home any longer. She began to look for memory care facilities. We found one close to both of our homes. It seemed well staffed and the people seemed well cared for. We had no idea that the next 6 months would be quick, painful and devastating.
Two years after diagnosis, my dad was placed in memory care. My stepmom was there everyday, most of the day. My dad struggled to adjust to allowing people other than my stepmom to help him with, well everything. He fought to do everything on his own as his disease progressed and he lost he ability to figure out simple tasks himself like sitting down and turning around. He speech continued to decline. We weren’t even sure how much of our talking he could understand. I cried on the way out every time. The sweet nurses and staff were always there to comfort me. I couldn’t believe the rapid decline that was happening before my eyes. I always thought Alzheimer’s progressed slowly. I thought there would be more moments of lucidity. I had hoped his Sundowners would get better. That his days and nights would be righted again. Medication after medication we tried to no avail. Some meds made him more agitated. Some made him too sedated. It is frightening to see your father slump over at a meal because he cannot stay coherent. It is devastating to see him seemingly “drugged up”. No medications could stop the Sundowners. And then, he couldn’t walk anymore. He was relegated to a wheelchair and confined mostly to his bed because of sleepiness. There were so many questions during this time. Arguments with the nursing staff about medications, dosage, timing. Hospice was called in due to the severity of the Sundowners, and especially because of difficulty eating and drinking. We were told that once he starts forgetting how to chew and swallow, the decline would speed up. Coming to terms with what hospice means is a task unto itself. My dad’s prognosis was six months or less. What? How could that be? He was only diagnosed just over two years ago.
Lesson #4: There is a time to let go. My dad passed away on June 13, 2017. He was 72 years old. Both of his parents had developed dementia in their late eighties/early nineties and lived well into their late nineties. Why wasn’t this the case for him? The time from diagnosis to death was two and a half years. He wasn’t considered early onset, but he also didn’t seem to be normal onset either. He was active, still working and vibrant when he was diagnosed. This disease robbed him of so much: time with his dear wife, time with his grandchildren, travel and new experiences, dignity and choice at the end of his life. But there were also some blessings on this journey. Blessings that he may not have been able to leave had he not experienced Alzheimer’s disease. My dad and Alzheimer’s taught me to be in the moment and enjoy just simply being together. My dad and Alzheimer’s taught me that not all of the changes that occur with the disease progression are horrific. The sweetness and affection that we shared in the last year are memories I will cherish. My dad and Alzheimer’s taught me to be an advocate for the voiceless. My dad literally did not have a voice in the later stages. We had to say tough things, ask difficult questions, and expect answers. This is the only way that both our loved ones and the funding for this disease will get the attention they deserve. We must advocate. I don’t have to review the statistics of this disease. They are well documented. Until people have an experience with this disease, it remains “Old Timer’s” disease: this thing that just happens to old people. Without advocacy, our loved ones and the ones coming after them have no voice and no fight and no hope. Because this disease leaves no survivors. With advocating, there is hope for the future: for us, for our children and for the eradication of this disease. As I continue to grieve, there are things I must let go and things I must carry on. I will let go of having to know the whys and hows and what could I have done. But my experience with this disease will not allow me to let go of the fight and hope that one day Alzheimer’s will be curable or preventable. I had to let go of fear for the future and hold on to hope. There are probably so many more details of my dad’s story and life to share. But I hope that I have left you with a glimpse of my story and a little dose of courage to keep fighting the good fight. Your loved ones deserve it, and it just might help you to grieve as well.