Dementia

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Isaiah 46:4

Many of the dementia-related scenes in Pon-Pon (Natalie’s father), and  Alone (David and Annabeth) come from personal experience. My father suffered from dementia.

Dad was diagnosed with Parkinson’s Disease around 1994. Before that, he had been diagnosed with an essential tremor. He had been having trouble standing for any period of time – the first time we really noticed it was at my wedding in 1987 when his legs began trembling terribly while he was standing up front, waiting to give me away.

After he was diagnosed, Mom was his primary caretaker and in the fall of 2000, they moved into an assisted living facility since they could see the writing on the wall and knew that Dad would be needing more help soon. Three months later, she was suddenly diagnosed with lung cancer and died within three weeks. Suddenly Dad was on his own.

Before Mom died, Dad was getting up every morning and driving himself to Hardee’s for a biscuit, going to the gym, and stopping by the grocery store on his way home (after looking for “deals”!) Yes, he struggled, but he was able to do this independently every day.

With half a year of Mom’s death, Dad was in a wheelchair, was living with me and my family, and was having hallucinations. (I suspect he had been having hallucinations before Mom passed away and that she didn’t want to “burden” us with that information, but I’m not sure.)

Dad’s hallucinations were all visual. He would see cats or children or nuns with golf clubs. A little man sat in his car stealing quarters in the heat of the day.

Dad had two subthalmic nuclear implants (deep brain implants) implanted during two separate surgeries. These did not do any good, and his neurologist noted that Dad was his only patient who had not seen any improvement as a result of the surgery. Next Dad was diagnosed with PSP (Progressive Supranuclear Palsy) in addition to Parkinson’s. I can’t remember exactly what led to this diagnosis, but it had something to do with his eyes. At this point, I was just starting to be able to research things on the Internet and came across something called Lewy Body Dementia. I asked Dad’s neurologist why he wasn’t considering that as a diagnosis. Again, it’s been too long for me to remember his reasoning, but I do remember that he felt that the hallucinations were due to the medications Dad was on for Parkinson’s.

After living with us for over two years, Dad went into a nursing home (excuse me, assisted care facility) near my brother.  He lived there for about two years before he passed away. After he died, we had his brain sent to CurePSP, where they did a complete autopsy and sent us the results free of charge. I wanted to know exactly what Dad had, in case it was hereditary, so that my children would have that information one day.

Dad did not have Parkinson’s, nor did he have PSP. He had Lewy Body Dementia (also called Diffuse Lewy Body Disease). Like PSP and Parkinson’s, there isn’t a whole lot that can be done, so I wasn’t upset or mad that he was never properly diagnosed. Proper diagnosis would have helped us deal with things a little more appropriately (he wouldn’t have had those two surgeries and he wouldn’t have been on some of his meds), but in the end, it is what it is. Lewy Body Dementia, by the way, is the second leading cause of dementia next to Alzheimer’s, but I bet you’ve never heard of it - most doctor’s haven’t heard of it either! Although I never address it directly in the Chop, Chop series, in my mind, Natalie’s father suffered from Lewy Body Dementia, but was misdiagnosed with Parkinson’s like my father. Misdiagnosis is very common.

During the time of caring for Dad, I found a book to be extremely helpful – especially in dealing with practical, everyday problems that arise. It is called The 36-Hour Day and I checked it out from the library. Although it is geared toward caretakers of those with Alzheimer’s, I found that this book helped me deal with his erroneous beliefs (as Tanner learned in Alone – reassure and redirect!) and how to deal with the inevitable once he had to quit driving.

I also encourage you to check out my friend Toni's page on Alzheimer's. Her mother is battling this disease and I have always been most impressed with the way Toni deals with the devastating effects of this illness with such grace and love. Toni is one of the many people God has allowed me to get to know through writing the Chop, Chop books.

If you are dealing with dementia in any way, shape or form, I am sorry. There are no easy answers, no easy fixes. I pray that God will lift you up and give you strength.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11