This series of posts is going to cover my recent experience with several topics including: dementia, choosing between treatment and comfort care, hospice, and death. As most of my posts go, I share this experience, not only for my own healing, but for anyone else who is, or has, gone through a similar experience.
When this series of events began in early February, I knew that I wanted to document it, however, I also wanted to spend as much time with my father as possible. So it is now, after his passing, that I am putting words to this experience.
This winter brought a cold snap to several California areas. Because of this, my 84 year-old father was spending more time in bed, saying he was too cold to do his normal activities. This worried me as I know that, minimal activity can wreck havoc on the body and mind (especially in the elderly). I live 3 hours away, so my options to help get him out and mobile were very limited. My sister who lives with him, also reported that he was very resistant to getting out of bed, and grudgingly stepped out for doctor appointments.
On Saturday February 6th, I received a call from my sister (who lives with my father). She informed me that our dad was exhibiting strange behavior over the last few days such as: withdrawing, low appetite, not talking, bowel incontinence, and wandering. She thought he was really depressed. I said “Take him to the Emergency Room.” My father had a TIA (mini stroke) almost 10 years ago, and I worried that he was possibly having another stroke.
I spoke to him by phone as he sat in the Emergency Room, and I did not recognize the person on the other line. My father is talkative and a great storyteller, but this time, he only responded with “yes” and “no”. It was as if someone had zapped my father’s personality out of him.
After several hours at the Emergency Room, it turned out that my father had a Urinary Tract Infection that caused delirium.
When I heard this I was confused. A UTI seemed like such a minor thing to have caused such a significant change in my father. When I spoke with my sisters, I realized we could no longer avoid the “A” or “D” words: and Dementia.
His Monday morning appointment with his primary care physician confirmed our fears, yet I still wasn’t prepared to hear that my father had Dementia.
A dark ball of fear rolled down into my belly. My father, as I knew him, was gone. In that moment I knew that I would never talk to him like before, that I would never hear his spirited voice recall stories from his past. I thought about his decline and worried about his care. How bad will this get for him? For us?
That week I kept in touch with my dad, my sister, and her sons who were providing round the clock care for him. His wandering resulted in him being found in the back yard at 5 a.m., or sleeping in the spare room he never uses, or standing in random places for prolonged amounts of time. The worry of him walking out the front door, or falling into his backyard pool was very real, so changes were made to help reduce this worry.
As for myself, I was in shock. I went to work as usual, but felt like I was a shell of a person. I worried, and cried, and collected myself just enough to do what I need. I swayed between healthy eating and drowning in junk food; I would “toughen up” and fall apart; I took charge as a grown up and was a scared little girl.
I decided to visit him on the weekend, and tried to prepared myself to see my father in his new reality. I felt like I couldn’t get there fast enough as I made the 3-hour drive to his home in the early hours of Saturday morning.