Memories Fade, But Love Stays
I would venture that dementia is unlike any other disease. It's not like diabetes
that has a clearly defined line of treatment, whether it is dietary control,
exercise or medication or all three but it does have a degree of management that so
many forms of dementia do not.
With diabetes the person stays fundamentally the same.
Once inflicted with dementia the person that you still recognise changes.
That's what makes it so hard.
When a carer arrives in a new client's life they can struggle to 'see' the person that others see. Also, I have found that particularly close family can find it difficult to know what their parent, aunt or uncle needs. I once asked a son en-route to meet his mother who had early onset dementia how she preferred to be addressed by strangers. Mrs... or their christian name and more importantly if they were happily tactile aka a hugger? He was adamant that she wasn't the touchy feely type. So, I kept a polite distance and greeted her warmly but from a distance. However, no sooner than her son left, she came up and hugged me.
Many carers and family alike will be familiar with the 'return to childhood'
and asking 'when will mum or dad be home?' situation that predominately
occurs around dusk. Often referred to as Sundown Syndrome.
I think it is safe to say that most children like to be hugged but only by
someone they feel comfortable with.
It's a big ask to expect a stranger to know how soon this is acceptable but
there are signs, usually in their body language.
I find it helps to encourage people to talk about happy memories and just
don't worry about current or day to day issues.
That's just not a world they can live in right now.
As I have mentioned before one of the lovely things about live in care work
is a chance to visit and stay in new places.
For older people, memories of childhood homes are often their happy place. I
once asked a lady to tell me about her specific childhood memories e.g.
walking home from school via the village sweet shop.
Once it was established that this was indeed a happy place, we drew a map
together, using her five senses.
I guess being a writer as well as a carer helps. The golden rule being, show
don't tell for maximum effect.
What did the sweet shop look like, what smells come to mind? Her animated
expression told me we were on the right track.
Of course, these simple distractions don't always work but worth a try.
So... next time the family suggest looking through an old photo album maybe try harnessing their actual memories instead - because looking a photos can also bring tears, either because they have they lost those people or even worse they can't recall them and feel they should remember who they are.
Going back to touch for a moment I don't think I have ever seen a better
portrayal of this situation than this clip from the series This Is
Us.
The daughter has to explain to her two brothers that their mother 'is still
in there' and just because she cannot respond as she used to she will still
feel the love.
That was also the message in the wonderful book Still Alice and later a film by Lisa Genova, where she emphasises the need to show some tlc.
Memories fade but love stays. (paraphrasing)
On a personal note I first experienced dementia back in the 1980s when Marjorie, a much loved client of my hair and beauty salon said to me one day, I do hope I am not going to be like my mother! Her mother had been admitted to a 'Mental hospital' with what was called senile dementia. At the time I was afraid I knew the answer but there was no way I was going to admit that...any sooner than necessary.But I did speak with her husband. They were the most loving/fun couple I had ever met. They still held hands walking along the street and played silly pranks on each other but I had to tell him of my worst fears. He knew. There had been plenty of signs. Back then, there was little to no treatment. The next step was a secure hospital.
Once that happened, her husband warned me. Don't go and visit her. She won't know you and it will break your heart. Of course, she didn't know me and yes, it broke my heart.
Now, in 2024 we understand more about coping with this most cruel of diseases but just remember that whether you are friend, family or carer, genuine empathy and compassion can help but it's tough. So, remember to look after yourself too.
They would want you to.
If you would like to read my poem about my friend Marjorie. The title is:
The Silent Scream
It's in a compilation of poems that I wrote in 1980s that I recently
discovered and now published.
I'm glad I wrote about it all at the time because memories fade...