The three weeks spent away to assist my sister in preparation for the eventuality of placing our mother in palliative care was an eye and heart opener. Before travelling the 16 hours I had always thought I was a compassionate and kind person with extraordinary capacity for patience and understanding.
I was wholly wrong.
I did the research on several sites such as AARP, NIH, Alzheimers Association to get a grasp on this disease. None of which prepared me for what I was about to experience first hand.
For a bit of background please read about Lewy Body Dementia at – https://www.nia.nih.gov/health/what-lewy-body-dementia
This site has a wealth of information on what it is, how it is diagnosed, the symptoms and treatments.
My mother was diagnosed in April after my sister called in almost full breakdown due to the stress of caring for her as she lived alone and trying to care for her own family at the same time. I called a college friend, who is a neurologist to discuss the symptoms with him – the shaking, hallucinations, inability to maintain balance. He suggested strongly she see a neurologist in her area as soon as possible. He thought it might be Parkinson’s and not the good kind.
My sister arranged the appointment, and after the consult and imaging it was clear to that doctor that, mom had Dementia with Lewy Bodies (DLB). Her frontal lobe was separated from her skull at a much more advanced rate than anyone her age.
This disease as you have read has no cure, and will require nursing home care at some point and ultimately hospice care for her final days.
My trip was to go out there to her home and begin organizing the house to make it more simple to get around, and remove the unnecessary clutter, go through papers and collections and sort out all her clothes, shoes and such in preparation for palliative care.
When I got there, I started in on a room by room assessment with the knowledge that I would be focused on just the sorting and clearing. In her state of residence, they have a program which focuses on keeping the elderly in their homes for as long as possible. It is called the LIFE program whereby care workers come to the home frequently to assure she is eating, bathed and has taken her medication and do light housework. These care workers came to mom’s home twice a day for such duties.
In my first few days I found out that the care workers were not as reliable as I was led to believe. Nor were they trustworthy, as my sister told me she caught one worker attempting to steal from her purse red-handed. She told me how that worker had stolen change and items prior to the purse incident and that that worker was fired. My focus now was to keep an eye on the remaining workers as I worked to assure they were on task and not rifling through my mother’s belongings to pilfer what they could.
As they arrived at 9 a.m. I thought I could sleep in and then take on each day while my mother was attended to. That also was not the case, as my mother would get up anywhere between 6:30 and 7 a.m. struggling to make her breakfast and get around the house. I had to get up to assure she did not fall as she had fallen five times within the prior week that I arrived.
Now I was having to assume care taking as well as the sorting. I had to parcel the time now to assuring she had her breakfast and was settled by the time the care workers arrived. When the care workers arrived they would take over and get my mom showered and dressed, do any laundry and picking up. That was about it. The rest of the time they just sat with her and watched television or dicked on their phones.
I do need to make a point to say that not all the care workers were this inactive. Two were outstanding. The others seemed to be deer in headlights and had no idea what to do when they got there. I had to instruct them.
Eventually, I was doing the meal preps for all three meals, cleanup and laundry. At night I had to assure she was readied for bed as well. This program was not all that it was cracked up to be. I was not making too much progress until my sister got off work to come by and assist.
To give you some idea of the task of clearing, this was not simply packing up a few things. This was evaluating everything my mother had amassed over her lifetime as well as items of her mother and father (as she kept all of their items as well). Photos were everywhere in the house, loose, album bound, in envelopes, bins, random stacks of frames, laced in bibles with other certificates of death, obituaries and other very important paperwork.
My approach was to retain all important paperwork, pictures and collectibles and give away any non essentials, such as small appliances in storage, books, clothes, tchotchke of no essential value. Believe me, the trips made to Goodwill were 2-5 times per day.
I learned that antique shops were no longer taking anything I had to offer as they said young people these days have no interest in these antiques. The local antique mall owner said I’d be better off just sending it all over to Goodwill or the Salvation Army.
We cleared out so many things that first week and part of next I thought I was going to be able to leave earlier than expected. However, my sister soon put that to rest when she opened the outdoor shed which was filled with refuse and storage cabinets filled with more “things”. I never swore so much in a single moment than I did when she opened those doors.
That is why I had the big purge of 2015 in our own home. We had an overrun of “things” that I did not want to burden you with. And although that was done, your dad amassed more “things” to fill the cleared spaces when his mother died. We will need to do another purge again because you should not have to deal with this in the event we require 24 hour care and must be placed in palliative care.
I digitized all the photos and paperwork I found at mom’s and uploaded them to the cloud. My sister has all the originals should you ever want to see them.
Statistically we sent over 150 bags of trash to the landfill and gave away about the same to Goodwill of all the things which were not destroyed by time. We wrapped up 4 sets of china and a fifth remains to be stored as my sister sees fit. I found so many things of my childhood that I took back a parcel of some but not all.
Now that the stuff portion is out of the way, let’s talk about this disease. It is not known to be genetic BUT…
Rarely, the condition can affect more than one family member. Some of these cases appear to be due to single gene changes (mutations) that follow an autosomal dominant pattern of inheritance. Other familial cases do not follow a specific pattern of inheritance and likely have a multifactorial cause (associated with the effects of multiple genes in combination with lifestyle and environmental factors).
My great grandmother suffered from something which is exactly like DLB. I was in high school when she came to live with us. She ended up losing her continence as well as her ability to feed herself and my grandparents went nearly destitute to pay for palliative care for her. She lived for 15 years.
There are genetic tests for the likelihood if you carry the markers for this disease. But you have to go to a health care professional to get these tests done.
I have contacted GARD regarding testing and hopefully you and I can be tested to see if there is a predisposition to this in our own genetics.
Another resource for factors that increase the predisposition for this disease
I want you to know that if I fall prey to this I do not want to carry on with it. There are states with a death with dignity law in place and I will want to be moved there to have the choice of how I handle this. Oregon is nice.
Now, be warned I will be writing more on this subject as well as on my mother as there are some extra life wisdoms which came out of this visit that you may find useful on your life’s journey.