Dementia. According to the World Health Organization, every year there are 10 million new cases of dementia. That is over 27,000 people a day receiving the diagnosis of dementia. Our father was diagnosed with mild cognitive impairment in 2019. At the time, there were no real suggestions from the doctors other than a few lifestyle changes but my father already lived a mostly healthy lifestyle. Walking daily, yoga, eating healthy, he was social - meeting with friends for coffee or breakfast, he was a docent at a local art museum, he attended a weekly French conversation group. There was no real sense of urgency from his doctors except that this can decline over time. We can retest him in a year and see the differences.
The same month my father was diagnosed with dementia, I got pregnant for the first time. Five months later, the world shut down for Covid. Seven months later, our son was born four and half weeks early at 4 lbs 13 ozs and admitted to the NICU for six days. My focus was on my son who was born in the early months of Covid, that alone was stressful and traumatic. These factors contributed to how I was able to move forward and play a role in dad’s support with dementia.
Just two weeks after his death, reflection brought on the pain of the last five years coming forward. I didn’t realize how much pain, grief, and trauma I was living in with the dementia and the dementia diagnosis. We were just moving through it. We were living in our bodies and responding to the situation, the environment, the people, the experiences - we adapted and moved forward. Throughout the last five years, grieving came and went - up and down. There is an early memory that stands out when I was pregnant and sitting outside in the back of our house. I called dad to get some advice from him, something I had done a million times before. On the phone, I realized that he could not provide me with the advice I was seeking, he did not have the vocabulary and ability to have a conversation of depth and weight. We hung up and I just sobbed and sobbed.
His verbal expression was the first thing to go. Apparently, this is common for people with frontotemporal dementia. He attended a few Speech Language Therapy sessions, maybe eight weeks but they did not seem to think it helped. I was not living in the same city as my dad during this time and it was hard to get all the stakeholders on the same page for his medical diet. This is a barrier when caring for your parents and I recommend sitting down with all the stakeholders to document the desires of the person diagnosed with dementia as well as how decisions are going to be made. Do not shy away from this diagnosis or judge it. In reality, once a person has been diagnosed with dementia, that is probably the best they will ever be, there is only decline from there. Looking back, I was in denial about this, always trying to pick out what he still could do and trying to escape all the things he could no longer do. A true optimist. By doing this, I am not sure I fully accepted the diagnosis. If you are going through this try not to compare how the person used to be, instead accept how they are right now, embrace them and realize it’s going to get worse. It’s okay. As practiced by the Stoics and in Buddhism, the only thing we can rely on in life is that things will change - the only permanent thing in life is impermanence. Instead of being scared of the decline and personality changes, embrace them. Just go with the flow of the changes, don’t judge it or hold on so tight to what was. Let go and embrace the new.
Grieving over the last five years came and went. While my dad could no longer guide me, we could no longer have our deep conversations, he no longer traveled to visit me where as before he would not let three months go by without seeing me. Although there were these changes, he was still here. There were things we could do together. We shared time together, we held hands, we went on walks on the beach, we went out for coffee, he pushed his grandson in the stroller and on the swing. There were still so many things to hold onto. We never discussed the parts of him that were disappearing.
Now that he is gone, the pain of the last five years is bubbling up. Yes, he was here, physically, and I had gratitude for that, but part of him was not and that is painful. While I allowed myself to grieve for him, I did not allow myself to acknowledge the impact and trauma this experience was having on my life. Thinking back now, if dad did not have dementia, he would have been on the first plane up to support, help and love on his first grandson, covid or no covid. Just weeks after his death, reflection continued and anger appeared. Angry that we did not get that time together, angry for the loss that his grandson does not get to experience his grandfather, angry we did not get that support. At the time, in 2020, I did not think about it this way, instead it was factual, dad can not come up, it’s covid, he had developed a fear to travel since the mild cognitive impairment diagnosis. He could not come up, he did not come up and we did not even talk about it. Actually, I felt more pressure to bring his grandson to him even though we were so stressed out about the premature birth and his small size. Family dynamics. They are an intricate part of moving through these stressful stages of life.
Not only is there pain but I also feel robbed of the last five years. He was here but he wasn’t really. It wasn’t the dad that hopped on a flight to see me when I called and needed him or the dad that always offered his wisdom or the dad that quizzed all my friends. Yes, he could no longer give advice and have in-depth conversations, but he was here and we talked about weather, food, and what he did that day. I tried to visit as often and frequently as possible while also working fulltime and having a young child. It was hard but every trip was worth it. You will never regret taking that extra trip or having that extra time with a loved one especially after they are gone. We shared time together and that was important but also there was trauma in what to do next and how to do it and all the unknowns. But now that he is gone, it is just a total and complete loss for him and the final years we had together.
The final years were different, it was less about cultivating our relationship and moving forward but more about hospital visits, what’s next, where will he live, what does he need to live comfortably, etc… Caregiving. That was hard. Try to step back and look at it from a larger perspective. Instead of getting swept up in the details of the day-to-day and the caregiving. Remember that this person could die tomorrow or ten years from now, dementia is a terminal illness. What do you want to do today that will enable you to know that you engaged fully with this human that you love and did not waste any moments?
Since his passing, a popular question I get is, “how are you?” I am sure this was a popular question prior to his passing but it feels different now. It stings, it’s hard and makes me want to curl into a ball and cry. I know people are trying to connect and show they care but there is no way to answer this question in honesty at that moment unless you’d like a puddle of tears. Another question could be, “how is your morning going?” or “how did last night go with your family and dinner?” More specific questions about the day because how am I with losing my dad, I’m pretty miserable and super sad. It is a day by day situation, I get sad suddenly, and then exhausted. I can’t take on other peoples’ stuff and I feel bad about that. It feels like I can’t be a good friend right now but I have to do what I can do to protect myself. Boundaries. I am trying to give myself grace, be with my thoughts, grieve and function all at the same time. I am still working full time, caring for a three year old, doing all the daily chores and feeding myself and our family. That’s exhausting on a normal basis but now add the loss to it and my plate is full. I can not take on as much and I am leaning into relaxing activities. Non-judgment for me if I get into a little more tv marathons, sleep in a little bit more, and miss my daily exercises and meditation. Of course, I know these activities will make me feel better in the end but they also just feel so hard to do at times.
Losing a parent is hard. Losing a parent with dementia is hard too. Not one is better, worse, easier, more difficult. It is all just hard. A lesson I learned at an early age from our father was that paths are just different, not one is harder or easier or better or worse than the other, they are just different. That is what he taught me as a young girl when we lost our mother.
Bio: written by Kristy Banks, who lost her father, John R. Banks, at age 79 to dementia in February 2024.