Dealing With Dementia
My parents have always been very independent. They both worked from an early age and they both dedicated much of their time to EMS in their community. In fact, my dad worked until early 2019 at the age of 81. He had a lengthy list of professions, Bus Driver, Security Guard, Police Officer, Medical Investigator, Court Officer, and Forensic Instructor. Along with all the “jobs” he had, he was also a son, a brother, an uncle, and a wonderful friend. However, he was most proud of the role he had as a husband and as my father.
Early in 2019, I began noticing he was forgetting things that he always knew like the back of his hand. As a Forensic Instructor, he taught two classes a year at the local police academy and his presentation was on crime scene preservation. He had three cases that he used all the time and knew those presentations like he knew his name. I assisted him with a class, and it was that day that I knew something was wrong. He mixed the cases, he was unable to answer the questions that were being asked and without making him look foolish, I finished his last class for him. His primary medical care provider attributed all of this to “normal aging.” I did not agree with that answer and knew in my heart it was much more than that.
In December, my cousin took my parents to Florida with her for three months, to get them out of the bulk of the NY winter. He loved Florida. While he was in Florida, my cousin noticed that he was not himself. He was timid, apprehensive when leaving the house, confused and most of all, just not the old Rich that she knew. We talked a lot about what we felt was going on and as hard as it was, we both decided that he was in the initial stages of Dementia.
As an Emergency Medical Technician, I am trained to heal. As a daughter, I am raised to depend on Dad. He had by far many better days than bad. That did not negate the fact that the bad days were trying days at best. He knew that he was forgetting but did not remember that he forgot. There were new doctors to meet, new medications to take, and huge decisions to make, and the most important thing that had to be remembered was when he was able to make the decisions, he was allowed to make them.
We had slowly declining months from February to September of 2020. He fell once because he had gotten disoriented. He was on new medications to “slow the process down” and we were dancing around the fact he would not give up his ability to drive. The only positive thing I found about COVID was it made keeping my dad home much easier. While my mom was frustrated because the man, whom she had known from the age of eighteen, was no longer the man she fell in love with. I was faced with the knowledge that there was a chance my dad was not going to know who I was. He became quieter than usual and argumentative when he was not being passive. Mom knew about Dementia but did not know what to do with it now that it lived in her house. My active time in EMS provided me the current training and knowledge as well as firsthand experience with it; however, when the patient was now my own father and Dementia was living in my house it was a very new experience.
In September, his symptoms started to accelerate. He was more forgetful, he depended on me far more than anyone else and he changed quickly. He was in the hospital for four days and I had to stay there with him because his confusion at night was bad. All he wanted to eat was Teriyaki Salmon from our favorite local restaurant. No exaggeration, he had this for lunch and dinner EVERY DAY for four months. My work schedule was shift work at this time, so making sure his Salmon was there sometimes trying, and the restaurant was closed on my days off. I even tried to buy it and make it for him, but it was not what he was used to, and he would not eat it. Mid-December he started to cut back on his eating. Vanilla ice cream was his go-to food and the occasional few slices of boiled ham became his means of nourishment. Fluids of any kind that he wanted got added to the menu too.
Bidding for new shifts at my job was posted and I chose the midnight shift. Thinking I would be at work while he was sleeping would be the best option so that plan was put into action. That was to start in February. January 1, 2021, while I was working a 4-12 shift, my mom called 9-1-1 and I received her call. My dad fell, and hit his head and she was afraid to move him. I dispatched the police, the paramedics, and an ambulance, and left work. Upon my arrival home, he was being placed in the ambulance with a huge hematoma on his right-sided forehead. Trip to the ER, x-rays, blood work, and a CAT scan was done. Six hours later he was discharged home. This was on Friday.
By Monday, when I helped him from the bed to the couch, I was certain he was not going to be around at the end of the day. I got him settled, made sure my mom had what she needed, and went to make his funeral arraignments. That Wednesday we had Hospice at the house, he participated in the decisions until he started to get tired. My job was extremely understanding, they told me to take all the time I needed and keep them up to date. I had never had the personal experience of having a palliative care package of medications in the refrigerator and when he spiked a fever, I did not know how to adjust to NOT fixing it. Over the next sixteen days, I became my father’s primary caregiver. I slept on their couch every night, dealt with making decisions on when to give him the medications in the “brown bag” and wrote his obituary to be sure every life accomplishment he had was covered.
We had some very funny moments during these sixteen days, and we had some very painful moments too. For the last few days, he was not responsive much, but I knew that he could hear me. I promised him I would take care of my mom; I would make sure that he got the funeral he deserved and most of all that I would always remember him and how much he loved me.
The day that my dad passed away, we watched the Presidential inauguration (only because Garth Brooks was performing), we talked (well I talked he listened) and when it was time for him to relax, I put on his favorite musical group, the Statler Brothers and gave him some alone time. At 720pm I heard his breathing become agonal. I grabbed my mother and brought her into the bedroom and she and I sat on his side, held his hands, and told him how much we loved him and how much we were going to miss him, but that it was time for him to meet his son and daughter that he never got to meet (they passed at birth) and be with his Dad and Mom again.
At 7:30pm on January 20, 2021, I lost my dad. I went from daughter to caregiver to having one parent that night. However, I was given an opportunity that not everyone gets; I got to share the last twenty days of my father’s life with him, I was by his side every moment of every day. He knew how much I LOVED HIM!!