So what exactly is Lewy Body Dementia (LBD)? According to some sources, LBD is also described as Dementia with Lewy Bodies, named after the scientist who discovered the protein that causes the disease.
The Lewy Body Dementia Association in the USA has some basic information that would be helpful for those recently diagnosed and for the caregivers and family members of someone who has been diagnosed.
There are several websites such as this so I am not going to say more about the disease or how it is being treated medically. I want to write about my experiences with my mother who was diagnosed with LBD in October 2016.
It’s been quite a journey and not one I have even the slightest experience with. Prior to Mom’s diagnosis, I had not even heard about this type of dementia. Considering that it the second most common dementia, there is little publicity about it.
I recall getting Mom’s diagnosis and immediately doing several internet searches to find out what this was about. I have known people with Alzheimer’s and have a good idea of the short term memory loss at the early stages, progressing to more forgetfulness at later stages and complete memory loss at later stages.
In retrospect, I fell into the same assumptions about Mom when I observed the early stages of cognitive decline. LBD does not present in the same way as Alzheimer’s so I missed many cues. Once she was diagnosed, I could see clearly that the signs were all there.
So what were some of the things I noticed and how long did I see them but not really? Two to three years prior to her diagnosis, I she started asking me to help her make decisions about her investments. I gave her recommendations as if I was dealing with my money but made no final decisions. She called her financial planner and made the transactions, explaining to him what she had decided. Then she’d tell me about her conversations. He confirmed that she had the conversation.
Then it was paying her MasterCard each month. I did that online but she called at the time the bill was due to ask if I paid it and wanted me to send the statement to her home so she could reconcile the slips. All good. Then she gave up her car and Robin gave Robin a grocery list each week of things she needed. I cooked several meals each week and gave to her. She got fussy if the containers were not labelled. I later bought single serve containers and had to label each one of 10-12 each week. Then it was appointments she needed to be reminded of so I told her to use a monthly calendar (which she did anyway) but she started using two calendars and a notebook or two so that she forgot which one she wrote in.
As you can see, the list went on and on. I was frustrated at times, thinking that she was unloading more and more of her responsibility to me. She forgot or misplaced things constantly and I chalked it up to forgetfulness or laziness. The one thing she never forgot was her finances. She could tell me down to the last penny how much money she had, what was on sale at the grocery store that week and how many bonus points she would get if she bought something on sale.
Hindsight, as they say, is always 20/20. She forgot many things but not her money so I missed all the signs that I am now seeing. She is quite bright and was able to do quick mental calculations previously. I am surmising that all her cognitive energy was focused on one thing when she started forgetting. I even recall saying that at least once a month – that she seems to be forgetting everything except her money. I said it mostly in frustration. I can see now that it was her way of coping.
More to come…
