It’s Lewy Body

Even a fly on the wall would be completely nonplussed if it could listen in on some of the conversations of my Lifeline Group.  When we are in Alzheimer’s world we speak a different language.  Statements and opinions voiced in the most casual manner  would be nonsensical and also incomprehensible to others.

This morning we are having a caregivers only session.  Jim comes in with a sigh and says:

“Ladies, I think I have crossed over into the Lewy-Body camp.”

I was puzzled but, before I go any further a note of explanation is needed.  Alzheimer’s disease is the most common cause of dementia.  Another is Lewy Body.  There are many types of dementia.  Each one exhibits a particular set of symptoms that help clinicians to identify the type of dementia the patient has.  Each type has some dominant traits and a different enough pathology that help to identify the particular disease. Diagnosis is not easy.

Lewy Body is absolutely fascinating to me and one that is most often misdiagnosed as Parkinson’s disease another type of dementia.  Sometimes it is diagnosed as Dementia with Lewy Bodies since the name refers to particular proteins that form inside nerve cells in the brain and play havoc with them.  I used to interpret the phrase as  Alzheimer’s Disease with Lewy Bodies as I, in the beginning,  equated Alzheimer’s Disease with dementia. That is not the case. Alzheimer’s Disease and Lewy Body are two different diseases that cause dementia.

The dominant symptom of someone with Lewy Body is that they have hallucinations.  This  now becomes a little more complicated because hallucinations can  and do occur with other dementia.  Since the caregiver is the one to observe and see the  manifestation of this particular behaviour he or she must be careful to identify it as hallucinations and not  delusions.  Delusions are a different kettle of fish.  Simply put a delusion is where the patient complains that someone has stolen money from them while an hallucination would be to see money which does not exist. This is course 201 at Alzheimer’s university so we caregivers know the difference. Clear as mud, right?

My fascination comes from the fact that if you are a patient with Lewy Body dementia your hallucinations are unique to you.   It took me a while to wrap my head around it as the person with Lewy Body sees, hears, tastes, and interacts with people and things that are just not there.  It is not an imaginary world.  It is absolutely real. It is their world and to them it is perfectly logical. But let’s go back to Jim.

“What do you mean you have crossed over?” I asked.

“Well yesterday we were going to the day programme. I helped Carol into the van and then went around to the driver’s side, got in and then sat.  I did not move and when Carol did not say anything I asked if I could drive off.  She said ‘yes’. I turned to her and asked what about the other Jims.”

“Oh, it’s OK. You can go.  The other Jims are not coming today, only you.”

Jim turned to me and in all seriousness said: “You see, I was so used to having to wait for all the Jims to get in the car before I could drive anywhere that I was waiting for them to get in.”

I cracked up.  Jim joined in and soon we were reaching for tissues, so hard we were laughing.  I apologized and he said “Why?  It is funny!” And off we went again into the wonderful healing land of laughter.

I told him he did not have to worry about crossing over until he started to see clones of himself getting into the van. More laughter.

Jim has a marvellous sense of humour. Over the years he has regaled us with the special challenges of living with a person with Lewy Body dementia.  He has had to eat dinner with five other Jims and been asked if he did not like his dinner as he was the only one to leave anything on his plate. He has been told to go find the glasses or the keys at the other house.  At one time there were three homes and five Jims.  The three homes are not talked about much now but various deceased family members have been added to the mix.   The multiple Jims are alive and well and live with Carol. To Carol they are all very real.  No wonder he is discombobulated.

Carol is sweet, gentle and kind but you can see she has quite a bit of steel in her backbone.  We all wished we had known her ‘when’.  I always have a little bonus hug for her. She has a wry sense of humour and a lovely smile.

My Bert really likes Jim.  He calls him the ‘big guy’ since he does not remember names and Jim is a big guy.  Jim has a lovely way with Bert.  They love to tease each other. We ‘ladies’ as Jim calls us hold him in high regard.  We all have our challenges. Jim’s is the same yet different.  We are coping.

The Meander:  My Lifeline Group should be called the laughing group.  We have the gift of laughter and are able to see both the sublime and the ridiculous in the challenging journey we travel with our loved ones.

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