One More Chat With My Dad… Please

April of 2024 was an extremely busy month for me and my family. My girlfriend had received orders moving us from Virginia Beach to Fort Worth, TX – a short fused move that required selling our house, buying a house, finding a school for our son, and all of the other hundreds of things that military families go through during a Permanent Change of Station. My family had started the drive to Texas before me as I was finishing up my last week at work when I received a call from my mom who was vacationing in El Salvador with my dad and other family members. I was driving over the Lesnar Bridge when she called, and I immediately pulled over at the nearest gas station parking lot when she said “Your dad is lost. We can’t find him, and we don’t know where he is.”

????????????? My dad suffers from dementia. At least, the person that looks my dad has dementia. My real dad comes and goes in flashes and instances but then reverts back to the person held by the grip of this terrible disease. And that is why the thought of him wandering aimlessly through a country he didn’t know, ending up in a strange home, or walking into a busy street became a real and terrifying possibility. A few hours later, I received a call from my aunt saying that he was found by local police near a marketplace and was currently being released to my mom. I spoke with him and asked if he was alright, which he said he was fine, but had no real understanding of the situation or the danger that he had put himself in. Since the incident, his condition has declined to the point where he will have to move to an assisted living facility.

????????????? Years ago, before his diagnosis, my dad showed signs of cognitive function decline. He would forget names, his sense of direction, or unable to follow directions when asked to do something. Like most families, we thought these episodes were senior moments and not signs of dementia. When he was finally diagnosed, I wanted to understand this disease, its effects on him, medication or treatment options, and how this disease would progress. I weighed various options for his care to include what my home dynamic would look like if her moved in with us. In all of this planning and finding potential solutions, I had overlooked the stress that my mom was going to have to endure.

????????????? The planning and solutions I came up with made sense to me, but I was still living in the opposite coast. The experience of living with someone with dementia is an emotionally draining one, requiring saintly amounts of patience to deal with the many frustrations. I remember one night receiving a call from my mom saying that she couldn’t deal with my dad anymore and that we needed to find solutions, meanwhile I could hear him screaming at her in the background. I had seen him direct outbursts at her in public settings on a couple of occasions, but this was her reality now – a near daily struggle with verbal altercations, increased frustrations at his actions, and an emotional and physical toll that is impacting her well-being too.

????????????? My family’s story is not unique in the United States as millions of families are dealing with their loved ones afflicted with this disease. This disease not only affects the patient, but the care takers as well. As Chen and Lin state, the primary care is usually provided by the family with the patient living at home. They go on to say that most care takers experience stress, loneliness, and social rejection during the care giving process. My mom has certainly felt those emotions with the exception of social rejection. She is fortunate to have a support group of a few close friends and her sisters that encourage her to continue enjoying her life, but what she feels the most is embarrassment from my dad’s actions. As a result, she has distanced herself from most people and limits her social engagements and travels. I can see that taking care of him has become a burden for her and, like many elderly care takers, is facing higher levels of anxiety and depression. For myself, I cannot help but feel guilt for not being closer to help her take some of the burden off her.

The Way Ahead

We have made the decision to look for a facility that can care for my dad. Unfortunately, most nursing homes in the U.S. have limited spaces available for dementia patients and are facing a significant shortage of trained staff. This is a grim outlook considering that dementia cases are expected to reach a half-million cases this year, rising to a million new cases by 2060, with more families filling the role of care takers without any real training or practical knowledge. My advice for the care takers is to have patience, show empathy, and never be afraid or ashamed to ask for help. I consider myself to be an optimist, but it is difficult at times when I consider my dad’s continuing decline and my mom’s increased stress levels. What I am thankful for are the few moments that I can share with my dad, the stronger bond I have formed with my mom, and a stronger desire to take better care of myself mentally and physically for my son. But I do wish that I had one more father-son chat with my dad.