ALL WRITTEN AND ARTWORK ARE THE INTELLECTUAL PROPERTY OF PSG LOPES. ALL RIGHTS RESERVED.
2019 has proven to be one of the most harrowing years of my entire life. I have endured quite a bit over the years but I always seem to be outdone by even greater and more severe challenges. Just when I fear that I can no longer handle what is being handed to me, I finally, FINALLY, see the light at the end of that very, very long tunnel.
I thought new years was bad, but these past three weeks were simply the worst experience I have endured to date. First, I get the flu and bronchitis, then my father, mother, and brother all get it as well. My father, having advanced dementia, was strongly advised to get the flu and pneumonia vaccine this season. We took him to our local pharmacy and he received both vaccines in November. These vaccines gave us this false sense of security because regardless of these vaccines, my father received both the flu and pneumonia and had to be hospitalized. Granted, we were told that there was no guarantee even with the vaccine but it was definitely absolutely ridiculous how he got both back to back and it was such a severe case he was in the hospital for almost a week. He even had to spend his 76th birthday in the hospital!
My family was absolutely inconsolable. Watching my father struggle with fever, cough, sneezing, being in and out of consciousness, was so heartbreaking to witness. Once he arrived at the hospital, they gave me him fluids and Tamiflu. After his week at the hospital was done, we noticed some drastic changes to his behavior.
Dementia is one of the most unpredictably cruel diseases I have ever had the misfortune of observing for the past six to seven years. My father was always a man on the go. He was always working. He was a full-time math teacher during the day, he taught night school and worked at a community college on the weekends. The man always had plans, always was out the door and we barely saw him. During the summer months, he would socialize with his creative art groups in the city where he worked and kept himself occupied. This was the father I knew as an adult. As a kid, we didn’t see him much either; however, because we were young, he would make it a point to do some trips with my siblings and I whether it was to the movies, apple picking, the beach, the park, etc. These events didn’t happen often, but he tried when he had the time.
When my father retired, he became a completely different person. His behavior was erratic, he became clumsy, he became aggressive, violent, and made many foolish decisions. As an adult, I didn’t really know my father well aside from the hi’s and byes and light dinner conversations. I didn’t really hang out with him much. I considered myself pretty much estranged from him. So when these things were going on in my dad’s life, I just assumed it was because he couldn’t adjust well to retirement. I figured he was so busy his entire life and the shock of retirement was just too much for him. But the chaos became greater, the insanity of the events involving my father became so grand scale that as a family we knew it was time to intervene. We did everything we could from allowing his driver’s license to lapse and having his car towed, to other measures to guarantee his safety.
During the beginning phases of his dementia, he was diagnosed with prostate cancer as well. My father was very fortunate to still be healthy enough mentally to be properly treated and has since been in remission. We took him to the neurologist and he’s had MRIs and they had told us he suffered from a series of mini-strokes. There was no way of knowing when they occurred or how often they occurred. As a result of these mini-strokes, his brain shrunk significantly causing the dementia. They said he had a mixture of vascular- type dementia and Alzheimer’s-type dementia. I remember one of the last things the neurologist told my brother at the end of the office visit after diagnosis was that we were in for years of heartache. He certainly was not kidding.
Over the years since dad’s diagnosis, we have had to become smarter and sneakier and wiser and always tried to keep one step ahead of my father. He would sneak out of the house and walk the streets of our town and be gone for hours and we would have to call for help. He would touch all the kitchen items and make himself “food” made out of napkins and milk. He would try to feed our cats saucers of dish soap. He would pace and wander all night in his bedroom not remembering he had to sleep. We went from doctor to doctor until we finally found one with the compassion and empathy to guide us and my father through each stage. She has been an absolute blessing and up until now, she has prepared us for what was next to come.
When dad came home from the hospital, my siblings and I were shell-shocked watching dad’s newest transition of this distressing illness. Dad lost his speech, he looked at us like we were public enemy number 1, and he refused to eat or drink anything. We all came to terms with the fact that this may very well be the end. He may need hospice care and it may be time for us to finally accept that it is time to let go. After the hospital visit, the hospital staff set up several health care professionals to visit the home and evaluate my father and to help with his care. We received two very caring women who have also helped us further understand our father’s condition and to kind of relinquish some control over what was going on.
As human beings, we are raised to believe you have to eat and drink to survive. The one nurse practitioner that visited us taught us that in my father’s condition that need to eat and that need for a three-meal structure no longer exists. He will eat when he’s hungry, he will drink when he’s thirsty and we can’t make him do anything he doesn’t want to do. Even though to the naked eye it appears our dad is long gone, there is still the shell of the man he used to be in there somewhere and that man craves attention and dignity. He won’t be told when to eat, he won’t be forced to live up to our standards. He will do what he wants to do when he is ready. After hearing that, I was finally able to ease the tension that had been burdening my shoulders these past few weeks. I’ve let go of that desperate need to want to save my father’s life and to keep him living for a thousand more years.
Once I let go, I realized that my father began eating and drinking again. I nearly collapsed with relief. Along with eating and drinking, my dad began saying a word here and there. If you say, “Hi, how are you?” he will say “Good.” He will also nod his head yes or no when you ask him questions like, “Are you hungry?” or “Are you cold?” This was also a great relief.
I have literally been by his side since he’s gotten back from the hospital and I have been putting myself last, as usual. I haven’t been blogging, I’ve been lax with my podcasting, and I have neglected my latest writing project. I know that is completely and totally unhealthy of me to do. I just have been so traumatized over this event. I just wanted to be there for my father because I realize how short life is and I don’t know how many more moments I will have with my father.
I think life works in mysterious ways though. I think that even though this was such a tragedy, I feel that this has brought us all closer together as a family. I feel like I finally have a relationship with my father. I will never have the kind of relationship I always lacked and always wanted growing up, but I am satisfied with the relationship I have with him now. My father has become a sweet, kind, and vulnerable man. My family and I are constantly advocating for better care for him from the healthcare system. We have reached somewhat of a current homeostasis at the moment. His care is under control. We have people who come periodically to monitor his well-being and as a family we all take care of him and provide him with the best round the clock care we can possibly provide him with given our lack of knowledge of healthcare. We do the very best that we are capable of doing. Given our lack of finances, he is being cared for at home. We’ve adjusted and he is finally at a comfortable level post-hospital. At this point, this is the best we can expect given his condition. We are grateful to have him eating and drinking and engaging with us here and there. At this stage in my life, after everything I’ve endured, and my family has endured, there really isn’t much more we can ask for.
On this day, International Women’s Day, I’m going to allow myself to step away for a while and join the living and get the things I need to get done that I’ve neglected nearly a month ago. I’m happy to be back in my office writing and producing. It’s where I feel the most alive and happiest. Thank you all for continuing to visit to read my blogs. Thanks for the well-wishers. I had the loveliest comment on one of my blogs last night that helped motivate me to get back on track. Thanks to that individual. I am happy that my words bring comfort to some. I wish you all a very lovely day and a restful and relaxing weekend!