Dementia is unrelenting. In a weird way the person that is afflicted is kind of let off the hook. They become free of the disease because they no longer have their wits and sensibilities. It is everyone else in the family that is forced to deal with the fallout. And fallout is brutal. It is a fallout that is analogous to a severe storm. First, you feel the barometric pressure adjust, the wind begins to shift, storm clouds move in and then it pours, and pours, and pours. For my father there was a time after he was diagnosed where he could remain at home by himself. He was not a danger to himself or anyone else- including my mom. Yet, we knew that someday, he needed to be formally cared for 24/7.
My mom carried a horrific burden. Due to various medications and the disease itself my father became an insomniac. He would be up all night, pacing, mumbling, conversations were had with people that did not exist about events that never took place. His brain was working overdrive. As a result he could often be short-tempered, paranoid that people were out to get him and showed signs of obsessive compulsivity when it came to his opinions and feelings. It was awful, but what was most troubling for me was seeing my mom becoming increasingly worn out and exhausted physically and mentally. My mom worked during the day however there were nights she did not sleep or could not sleep. As things became progressively worse my siblings and I would stay over from time to time so my mom could go out of town visit family and friends and get a well deserved break. Moreover, my brother that lives in Chicago visited more frequently.
It was during one of his visits that things became unmanageable. In May of 2014 we all decided that we needed to have a family meeting to discuss options regarding my father. In short, it became clear to all of us that time was running out, he could no longer remain alone and needed professional care. As an army veteran we explored options with the VA about gaining some level of financial assistance and medical support because we did not have the funds to place him in a private assisted living community. We also did not know what was available in the way of county and governmental services. The level of red tape when it came to the VA was daunting, and certainly if any funding would be made available it would be months down the road. We did not have that time. My father also decided to accelerate the process.
During this period that my brother was home my father lunged at him when they were home alone. It was not violent and my brother could handle the situation, but the concern of course would have been what if that had been my mother? My brother was fine, a bit traumatized but okay. 911 was called and my dad was taken to the hospital in an ambulance. It was the last time my dad was at home.
Throughout the subsequent days and months my father spent time first in the emergency room, then the hospital itself and eventually to a local nursing home. Looking back on that five month period from May 2014 to October 2014 when my father finally passed away the decision-making process as well as the daily/weekly visits were stressful, hard, often upsetting but also filled with encounters of truly amazing people that cared for us and for my father. We will be forever grateful.
The one saving grace for me throughout the process with my dad was that my family- my mom and my three siblings were all on the same page. We knew what my dad wanted and what were his final wishes- no extraordinary steps to keep him on this earth. . .so when the time arrived we decided to make him comfortable and all of us try to be by his side when he went. We all were. I cherish that experience deeply.
I can’t imagine dealing with dementia in a family where everyone was not on the same page, where everyone was not in agreement as to what to do or how to proceed. That does not mean discussions are not had, and options are not debated, but what it does mean is that in that discussion or debate everyone in the family is clear that it is not about what you may want but rather what your loved one wanted. I’m sure families have been torn apart over such circumstances. That would be the last thing my father would ever want for us. For me that has become the biggest piece of advice that I have shared with people. Namely, be on the same page. The disease is hard enough.