Navigating New Chapters

My journey as Dad's Caregiver has been an emotional one.  This man, my Father, has had my heart all my life. He has been handicapped since I was nine months old, so I don't remember him "before the accident". Too me, growing up with a Father that walked stiff, lost his balance often, and had depression issues, was my normal. He still was kind, funny and enjoyed life. Mostly thanks to my Mom, who kept everything together & gave her all so we were a happy family.

His diagnosis of Dementia came back in 2010. Mom was concerned as we were noticing some struggles.  Both Dad's Mom and Sister had Alzheimer and it made sense to have some testing so we could prepare and learn how to best approach it and make things better for Dad's quality of life. 

Dad managed very well. He surprised us with his independent living skills following Mom's death in 2012, and managed to be productive in a semi-assisted living facility for a couple years. Eventually, he needed more care and we moved him into an Assisted Living that had nurses to handle his medical needs as well as a more careful eye on him as he continued to have independent living in a nice efficiency apartment.  We started to see more and more trouble and confusion in 2017. Then in the early morning of  December 29th, 2017, with temperatures below zero, he was found wearing only a pair of shorts, t-shirt and his tennis shoes,  wheeling his wheelchair through the parking lot frantically searching for a green Ford he said he needed to get moved. It is thought he had been outside for approximately an hour. He remained in the hospital for two weeks treating pneumonia, then was transferred to a Rehabilitation facility before his landing in a current Memory Care Home. It was determined the exposure to the extreme temperatures accelerated his memory loss as well. Once the brain cells "die" there isn't any recovery for them. There are different levels of dementia and Alzheimers. Dad is in the most functioning unit at Harrison Terrace. He is in what is called The Augusta Cottages of American Senior Communities.They offer programs specializing in the different needs of residents that are going through memory loss. Depending on how fast this disease takes over him, will determine which plan is best for him.  He currently is living in a co-ed floor.  He has a dear roommate (actually Roommate number 5 in just a years time).. this place can be a revolving door and unfortunately many people with memory loss stop "thriving" and move to another unit where they pretty much keep them as comfortable as possible as death is inevitable. Some will become aggressive, agitated or violent.  Some will be forgetful but functioning.  My Dad is this way. He has good days and bad. He can no longer remember many simple things yet he can tell you in great detail something mechanical or something that happened once upon a time. The worst is the days seeing him forget that Mom has died. He will ask where is she, or why did she "leave" him. He doesn't always remember what city we are in, where he is or lives, will worry he is "homeless" and frets about having bus fare to get home after work. He also mixes up facts with things that didn't happen. Or will grasp onto a memory thinking that time is now. For instance, the green Ford he wanted to have moved the night they found him outside... we connected that with his memories from the 80's working for a company that had car rentals. He often gets "stuck" in his memories from the past mixing with current time.Seeing someone you love, struggling with simple things we take for granted is heart-breaking. He will grasp onto something familiar, and while the details are incorrect.. to him it is correct. I notice with Dad, his biggest hurdles are dates, time, anything involving numbers.  I wasn't sure he could read any more, but sometimes... it's still there, and he will read something, anything in front of him.  But his love of "reading", his interest in magazines, history, fun facts... it's gone. 

His storytelling... well, Dad was always a kidder and exaggerated facts.  But it's a whole new level  as he tells elaborated stories about residents and staff.  In his mind, he doesn't live in a "nursing home" but works there... And I am lucky that the wonderful staff there goes along with it. He believes he has been promoted to a position that gives comfort & calms others.  He talks to them and assures them. He also will get assistance for residents when they need something.  And when he has time, he will help the staff pass out napkins and silverware.

He loves for me to bring Mocha when I visit. (He never was a coffee drinker previously, but I just go with it.) We will chat, I listen to his newest stories about his "co-workers". Usually ready for me to go as he will say he needs to get back to work.   There have been a few times that it wasn't so easy to leave.  One time he wouldn't let go of me. That is when it breaks your heart the most. He carries a "stack" of cards that have my name and number.  He claims they are his work papers.  It is a bit of a security I guess for him and the staff knows he is allowed to call me whenever he wants.  

His prognosis isn't great. He continues to choke on food and even saliva. He is not swallowing properly, and is on a mechanical soft diet. We are told eventually, he will forget how to swallow  as his body continues to forget to function. It is frightening, but seeing him have his good days, feeling successful with his "job", and making friends... brings joy to my heart.  They guy is a charmer.  Everyone at Harrison Terrace loves him.  Staff and residents. I just want him to be happy and safe. He deserves to be happy. Sometimes I will see that happiness, but usually it is more contentment.  I will take what I can get.