A Painful Journey

My Pops was always full of life and had smile for everyone. No such thing as a stranger… just a friend he hadn’t met yet. He was thankful for each day he opened his, this meant another day of life and possibilities were endless. In 2016 his memory started to fade and soon after the hallucinations began…at first it was little things and then they got bigger. The trips to the doctor became more frequent with little answers, and mom was frustrated at how to help him. Pops became less social and increasingly agitated, which was very unlike him. He was diagnosed with Parkinson’s and Dementia. The doctors said his memory loss was partially normal for his age of 75.

Fast forward to mid-2019 and now 78 years old, Pop’s is not able to drive, fully dress himself, wanders off frequently, and is too much for mom to care for on her own. Being me, and the daughter I am, I move in with my parents with my youngest daughter (she’s 12) to help my mom care for him. Pop’s will do anything for me because I’m his “Princess”. Doctors finally diagnose him with Lewy Body Dementia and explain that the vivid hallucinations, although not scary, are very real to him. I take a crash course in self absorbing all I can learn about LBD so I can be there for this man I love unconditionally, that is a Vietnam Veteran, grandfather to my four children and two great grandchildren.

We celebrate, what I believe will be our last holidays with him. Halloween, Thanksgiving- with all my children and grandchildren, Pop’s was overwhelmed and confused, he had an anxiety attack and asked why he was being held captive in this place. Please let him go home. As I cried, I helped him to his room and into bed. He is put on hospice care by the end of November 2019. The next two weeks he stopped eating and drinking. My Pop’s wanted to leave this earth in the comfort of his home with no medical aid. I watched him slowly die. He took his last breath on December 14, 2019 while my mom and young daughter were with him and I walked through the door. My daughter became a teenager a week later without the grandfather that had been the one constant man in her life.

Lewy Body Dementia robs us all! There are not enough professionals to educate people about what to expect and where to turn for help and support. Hospice told us over and over ” call us 24hra a day and someone is here for you”. Everytime I called I was told someone would call me back, and then I had to give all the information again and was told someone will be in touch. It’s just not good enough. My Pop’s donated his brain to The University of Washington research program for LBD in hopes it will help find answers and someday a cure. I will never stop fighting for a voice for those suffering and caring for others with LBD. My Pop’s was taken before his time was over.

I spent my 51st birthday this year, July 14,2021, at the Tahoma National Cemetery in Kent,WA with my Pop’s. He has been gone 19 months on my birthday and it still feels like yesterday.

Sheila Baty

July 30, 2021