Alright, my friends. We have battled Black
Friday, supported local on Small Business Saturday, and spent many screen hours
on Cyber Monday. Now, let's take a few moments to reflect on the Thanksgiving
holiday weekend. How did it go for you as you balanced the holiday with caregiving
for someone living with dementia? Were there tough lessons learned the hard way
about what your loved one with dementia can tolerate at this point? Were there
special moments of connection with your loved one? I hope there were more of
the latter and less of the former. I'd love to hear the good, the bad, and the
ugly. We can all learn from each other.
One of my favorite sayings is “when we know better, we do
better” and that holds very true in dementia care. Certainly, we have good
intentions and want the best for our loved ones. Yet when we don’t have a good
understanding of their brain changes and how to best support them, we can at
times contribute negatively to the experience. This topic is very important to
me because I have seen this professionally in the families I’ve served over the
last 15 years, but also with my own family member with dementia.
As a teenager, my grandmother began showing changes in
memory and thinking. My mom and her siblings eventually made the difficult
decision for her to live in a nursing home where she could receive the proper
care and oversight she required. As a family, we all greatly lacked knowledge
about her illness. Also, I’m gonna be real here with you, friends, there were
family dynamics including history of criticism among family members, hurt
relationships, challenges with addictions and all the associated baggage. Caregiving doesn't occur in a vacuum; instead all the history and dynamics impact the care experience. Our
family was far from perfect as are most families, yet the unrealistic expectations
persisted and multiplied. With each occasion, there was grief and fear that this could be her last. I’ll save you all the details, but I repeatedly saw my
grandmother become overstimulated, wanting to go “home” and my mother and
her siblings feeling disappointment that they were unable to make each the
perfect Thanksgiving or Christmas or Easter or Birthday for her.
On a smaller scale, I also had
many failed visits with my grandmother in her nursing home. I am – and have
always been – a perfectionist with ‘high’ expectations of myself. As a teenager
watching a grandmother changing, I had this completely random standard that I
held for myself… a “good” granddaughter will visit her grandmother 3 or 4 times
each week for at least an hour each visit. My guess is that some of you are
cringing already.
Here was the typical visit –
Me: Hi Grandma, how is your day going?
Grandma (GM): Fine.
Me: What did you have for lunch?
GM: I don’t know.
Me: Well, did you
have lunch?
GM: I don’t know.
The conversation spiraled downward from there until my
Grandmother – ever the gentile, southern lady demonstratively looked at her
watch then said “honey, isn’t there somewhere else you need to be?” Translation: "Get out of here, you are driving me crazy with all of these questions." This,
followed by me knocking on the administrator’s door asking if they fed my
grandmother lunch, to which they probably rolled their eyes snickering at my
naivety. I don't tell you this because I have unresolved guilt about it - I was doing the best I knew how to do at the time. Yet even as a young person, I felt the crush of these “unsuccessful”
connections at each visit. Ultimately, my visit frequency decreased and if I’m
completely honest, visiting became an emotionally painful and at times dreaded
“to do” each week. Can anyone out there relate?
Here is the scenario in a nutshell when looking back 20 years later… My grandmother had
dementia, although without an official diagnosis (that’s a whole separate blog). I – as
well as other family members – wanted to connect with her. With a lack of
understanding regarding her disease process and subsequent changes in her
memory, thinking and function, I attempted to connect with her through casual
conversation with a focus on recent events. This is how we had historically
begun our visits with small talk - as many of us do. Unfortunately by that
point in her disease progression, our connections were impacted greatly by
short term memory impairment from damage to the hippocampus and receptive/expressive
language changes related to disease progression in the temporal lobe of her
brain.
While your experiences are unique, some of you may have had similarly
unsuccessful visits during the recent Thanksgiving holiday. Let’s return to the saying “when we know better, we do
better”. Holiday (and all) visits will be different when those who have a loved one with
dementia have a greater understanding of dementia (specifically how these brain
changes impact the person’s abilities), adjusted expectations of the
interactions, and methods of connecting beyond dementia. If you would like more information about brain changes and
ways to connect beyond dementia, please comment below the blog, on the Facebook
post, or email me at rebekah@agingcarecoach.com.
Take good care,
friends.
Rebekah Wilson, MSW
Aging Care Coach
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