Adventures into the Unknown

I'm going to skip ahead a bit in the chronology of our story, because something I learned later in the journey helps me understand some of the first part. Most people are aware of Alzheimer's Dementia; in fact, it is the most recognized dementia. FIL never seemed to fit the mold though--he exhibited behaviors that were a bit more peculiar. A nurse at his facility mentioned Lewy Body Dementia to me because of some of his presenting behaviors. Once I looked it up,  I was so relieved to know that he isn't the odd one out; his symptoms and behaviors have a very specific reason and it is called LBD! It is the second most common form of dementia, and the most misdiagnosed.

The first place I looked when I began my research was here: Lewy Body Dementia Association

You can read the thorough definition and more about the disease at the link above, so I will not go in to that here. We now tell people that LBD is like having Alzheimer's + Parkinson's + Schizophrenia all in one! It is unpredictable, and exhausting for both caregiver and loved one.

Here are some examples regarding FIL:
Progressive dementia- Loss of attention span, and executive functions such as planning and reasoning. This is one of the things we first noticed. He did not know how to do things that he had done for 50+ years, such as popping the hood of a vehicle; or,  getting the tree trimmer to cut branches. (Think about it: A tree in the front yard needs a limb removed. You have to assess the situation and realize that you need a certain tool, and a ladder. You then must remember where those tools are located, and then go get them. Once found, you must take the tools back to the front yard; and then safely set up the ladder and prepare the tool for the task.) Well, he discussed the situation with a few others that were there to help, and headed to The Shop to find the tool and ladder. We waited. And waited. And waited. When he finally returned, he did not have the trimmer. I suspect he forget what he was looking for when he got to The Shop. In later stages, he tried to help take recycling items to the bin outside. He did this three to four times per week. When I watched him carefully, he gathered up the items and headed for the door...the wrong door. Once outside, he would walk to the bin, but not always remember where it was located, or how to open it.

Regarding attention, in later stages, he was all over the place. He sat for a minute, then was off to do something else. He would become fixated on something and could not be easily redirected no matter how hard we tried. He roamed the house and the yard; plus, he walked away from the house numerous times per day. It was like watching the Energizer Bunny, and keeping up with him was exhausting.

FIL's memory deficits became quite clear in the mid to late stages. He did not know my name or how I connected in the family. He would ask my name and where I lived. I would state my name and then explain that I am married to his son. Several times I heard, "Oh, that's great! I'm so glad  you told me!" A few minutes later, I might get asked the same question. One time, we had gone for one of our infamous walks. When we returned we sat at the table for a snack and he began telling MIL about this really nice, young girl that walked with him. She was a bit bossy and was always telling him to stop and look for cars, but she really was nice. He even looked at me and asked if I had met "that girl".

Hallucinations- FIL would often "see" things on the ground; at times, he even got down on the floor and picked at the carpet. He was unable to verbalize what he saw or was looking for, but he "saw" something. Recently while visiting FIL in his facility, he "saw" a dog and thought it was his own. I suggested that it wasn't his dog because it was not barking. Within minutes, he "saw" a women that he thought was moving her things out of her room. To him, it was real. He doesn't really understand that we can not see what he does. We generally play along so we don't upset him. He also became very paranoid about his things. He believed that others were taking his tools, etc and would get mad when he could not find something that he had misplaced. There was no reassuring him; he believed it and it was very real to him.

Features of Parkinson's- This was a little tricky. I never noticed a tremor in FIL, which I always thought was the most common feature of the disease. The big red flag for this symptom is the Dementia Shuffle as I call it. Short, uneven steps; stooped posture, and 'pill rolling' with his hands. This began happening more and more as time went along. While watching him eat recently, I did see his hands shake. I also found him to be very rigid and stiff. While trying to help him get out of bed one day, he kept stiffening and falling backward, almost like he was having a seizure. He has also begun to fall more often.

Sleep Disturbance- FIL has been known to act out his dreams, wake repeatedly through the night, and become drowsy during the day; all symptoms of LBD.

Visuospatial Abnormalities- This is most evident when FIL tries to eat. When he reaches for food or drink, he misses. He either over reaches or under reaches for what he wants. The other thing he does is step very high over a flooring transition. We did not notice this so much at home, but it is hard to miss now that he is in the facility.

These are clear symptoms of Lewy Body Dementia. The only way it can be 100% diagnosed is through autopsy following death. It is up to the families, friends and care givers to recognize and report symptoms to doctors. This is a "newly" discovered form of dementia, so not all doctors are up to date on it. If you suspect someone has dementia, as early as possible, see a neurologist. They are more skilled in diagnosing and treating many forms of dementia. Generally, dementia is not diagnosed until the mid to late stages, due to the person covering up their deficits; and those close to them adjusting to them, or decide it is "just old age." We have to be proactive! There is no cure yet; but there is research working on one. And there are several different drugs and drug combinations that can be used to slow the progression.