Have you ever turned your back on someone?
Many years ago I was unwittingly guilty of turning my back on my aunt.
Back in the 1980s my ex-partner’s father was diagnosed with probable dementia of the Alzheimer’s type (DAT). Later my aunt was also diagnosed, bringing the condition closer to my own family. I knew they were both forgetful, but when I visited their homes their diagnosis or forgetfulness didn't really change how I related to either of them. But what I learnt a few years later, however, is that many people do change how they relate with a person who is living with a dementia, which may not necessarily be for the better, including withdrawing entirely.
When my aunt, who lived in regional Victoria, moved to residential care in the mid ‘90s, I didn't go to see her; unwittingly I had turned my back on her. Not because I didn't want to see her, or was concerned she wouldn’t remember me (that wouldn’t have mattered to me), but because I was her niece, who didn't live locally, and her large local family had previously visited her home often. I just presumed her family would continue their contact, especially as my aunt’s husband and son had since passed away. Had I known then what I came to learn later, I would have gone to see her, to be sure she had someone, instead of presuming she had.
There is the potential, that even though my aunt was surrounded by family over many years, she may have been left alone during a time of confusion and vulnerability. A time when potentially she needed people the most.
For many, the reason for withdrawing is because the person who now happens to be displaying forgetfulness, or has been diagnosed with a form of dementia, won’t remember them or know who they are. This was the case with my own family.
In the mid-‘90s my father was also diagnosed with a dementia (of an undefined form) based on confusion and some memory loss. Even though my father had known his neighbours for many years, when he was not able to articulate who they were (and by the way he was never good with names), one neighbour said to me: “We went to see him once, but he didn’t know who we were, so we didn’t go again.” This was an attitude also held by a focus group participant in my Master of Public Health research who commented that her husband, who was living in residential care, didn’t know her anymore so there was little point in visiting him, a belief supported by the residential facility.
But it doesn’t stop there, even a relative of mine intentionally dismissed her grandfather, that is my father. The reason given for not going to see him was that he “lived too far away”. Even though at this time he lived in the city about 15-minutes’ drive from her, when he previously lived in the country more than a three-hour drive away! You see the last time she saw him, she spent close to an hour questioning him and coming up with various scenarios from the past in an attempt to stimulate in him some recollection of her. He didn’t recall, and she missed the opportunity to connect with him because of her insistence he remember her.
Many of us can be guilty, intentionally or unintentionally, of turning our back on someone, or just not being there. Let us be mindful of inclusion this Easter, and always, that even when someone may not be able to articulate a name or relationship, it doesn’t mean that there isn’t a memory, or a connection, or a desire for companionship. And it doesn’t mean that meaningful moments cannot be had by all.Even Tom Kitwood, before he changed his approach, initially believed that dementia was “a death that leaves the body behind”.(1)
What are your thoughts? Do you have a story to share of inclusion? Or of exclusion? Or feeling your existence has been denied? Follow me on LinkedIn and share.We are all capable of change, for the better.
Contact Connections Matter to see how we can help you in your relationships and help you to create change.
Until next time.
Stay connected. Keep listening. Never stop learning.
(1) Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham [England]; Bristol, PA: Open University Press.
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