This one is going to be far more of a personal reflection. While I have seen a clear need to try to provide data, analysis, and useful information, I also think there are times when simply being completely vulnerable and human is going to be helpful as we go through this together.
I just came from the home of my parents. My father is in the hospital with aspiration pneumonia that has been a complication from Parkinson’s disease. I haven’t seen him for weeks now because of the no visitors rules which are in place, which I fully support professionally. Assessments and tests in the hospital have determined that eating is going to repeatedly cause more aspiration pneumonia. One solution to that is to use either a PEG or NG tube, which most people refer to as types of feeding tubes. Unfortunately, even with either of those devices, the evidence is pretty clear that he will likely still aspirate saliva, and pneumonia would become a chronic condition.
In addition, as part of the Parkinson’s disease process, there is a loss of fine motor control as well as a decline in cognitive function. These have both been very obvious, almost at a rate where there are clear changes in as little as week that we saw before placing him in the hospital. I’m sure these have been incredibly depressing to him since he cannot do things independently anymore.
I had a friend of mine write about the need for Advance Directives and how important they are for family members just six days ago. I remember reviewing these with my parents a number of years ago and we pulled out the one for my father today.
Even though he is lucid at times now but confused at others, we had a document to look at from when it was clear what his wishes were. The other thing that I also had in the back of my mind in conversation with his doctor today was that we could certainly keep treating him aggressively for quite some time and it would slow his death, but it would not stop it. Not only would that add some suffering because of the barrage of ongoing tests and assessments, but as we go through the pandemic, he would also be occupying a bed that could be used for someone with a better prognosis and also free up clinical staff and support staff to care for others.
We took his wishes from his Advance Directive as well as talking about what the medical needs are going to be in my community shortly and decided to start the process of hospice care. All we are waiting for is to schedule a call with the hospice nurse to figure out how to make that next transition as part of end of life care.
It’s hard. All I’ve had on my mind since the beginning of February is death from my professional lens, which also carries a lot of emotion with it. From a personal lens, I knew this day was coming. Maybe that helped me be ready for this moment. I don’t know. I am feeling all of the crushing emotions that are coming at me from all sides right now in a very concrete way. I know that others are currently in the exact same place, but what really hurts is knowing that soon that will be millions of people. I grieve for every single one.
My heart goes out to you. I hope you will be able to spend time with your father in Hospice. I hope you will be able to hold his hand and let him know how much you love him. I hope that you can be there to remind him that you will be okay once he leaves. Again my heart goes out to you. No matter what age we are, we will always be our parents children.
Thoughts and Prayers
Nancy & Craig
I wish you and your family as well as can be as you say goodbye.
I lost my dad and best friend last year, at age 84. Hardest. Thing. Ever.
You are not alone…