What I have learnt from having multiple relatives with dementia

Throughout my life, I have always had someone special to me with dementia, so Alzheimer’s Society is a charity close to my heart, prioritising dementia research and awareness. 

I have encountered dementia in several forms. It manifested differently in each of my loved ones, and I’ve become more aware of the disease as I have gotten older. No matter the case, dementia doesn’t take over the love you have for your family member, and you can still see their true selves beneath the disease. 

Reflecting on a recent loss

Unfortunately, I recently lost my great nan, Joan Norah Jackman, aged 95, who, despite having dementia, still maintained her sense of humour and loveable personality until the end.

 At times, her memory was impressive considering her condition. Yet some days she found remembering things difficult and confusing, attempting to fight the disease. 
 

Towards the end of her (Nan Joan) life, I helped care for her as she became visibly weaker, yet my presence in helping her meant that she became more aware of who I was again. 

I will never forget the time I went around with my sister, who did her cleaning on the weekends. When I left the room she asked, ‘Who’s your friend?’. This hurt, to see the effects of dementia first-hand – with me frantically reaching for photos of me on her ledge to prove my identity. 

At first, I thought she was playing a trick on me. She did love a ‘good wind up’.

But it became clear that dementia was trying to take another loved one from me. 

Thankfully, for me, despite my Nan Joan passing, I think we won against the disease this time. She was able to pass peacefully with us around her, knowing how much she was loved and appreciated.

Dementia doesn’t destroy memories, contrary to common belief. My nan will live on in the memories I have of her and her past.

Being affected by dementia as a young  girl

My other Great Nan, Ruby McLelland, or Nan Wo Wo as we called her, also had dementia - as well as my Nan Joan.

She always made the carers laugh and loved her dog teddies. As dementia crept on, she began to walk and feed her teddies, further revealing her kind-hearted and caring nature.

But I remember as a young girl, her looking at me with confusion from afar.

This scared me: watching my great nan deteriorate because of a disease which I couldn’t comprehend. 

What my experiences have taught me about dementia

As I have grown older, I became more accepting of this aspect of dementia – understanding that sometimes those with the condition remember you deep down, but something is slightly in the way. For example, they might remember a younger version of you, if their long-term memory is better than their short term. 

I realised it is important not to get angry or give up on your loved one, for they will always remember the love they have for you deep in their heart. They want you to remain by their side, despite dementia’s isolating abilities.

This poem by Owen Darnell encapsulates this perfectly:

Do Not Ask Me to Remember

Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done. 

Although dementia is a disease of the mind, it affects our loved ones physically too, leaving them reluctant to eat for example, or frail and weak. 

The coronavirus pandemic especially has hit people with dementia hard. For example, us losing my other Nan, our dear Nan Batt, last year in the first peak; where there will forever be a hole in my heart from being unable to say goodbye. 

This pandemic has left those with dementia feeling more isolated than ever, not understanding that they cannot be with those they love, the people that keep them going.

Walking in memory of my nans

Having lost so many dear to me to Alzheimer’s disease, I have decided to, all being well, do the 5km Memory Walk in Milton Keynes on the 2nd of October this year.

Due to my interest in Alzheimer’s Society, I had previously looked into volunteering in some way, like telephoning a person with dementia on a weekly basis. However, I decided that caring for Nan Joan was my priority as her health had declined. 

When she passed, I looked back into different ways of getting involved online and saw that the Memory Walk was back. 

During the lockdown, I walked a lot, and my Nan Joan always told me stories about her love of walking her Alsatian when she was younger. When Coronavirus cases were high and vaccines were unavailable, we would walk to my Nan Joan’s house in the evening and stand outside and talk to her. 

She would reminisce about her love for summer walks by the canal and recount her usual local routes which she had never forgotten, making us feel even more connected.

I want to use this walk to remember my Nan Joan, and my other nans – to honour the memories I have with each of them. 

Despite dementia’s impact on their memory at times, I will ensure they aren’t forgotten.

I would encourage people to be wary of this disease and the forms it takes, busting the myths surrounding what it means to be impacted by, or have someone dear to you with dementia. I intend to get even more involved with the Society now that I have lost my nan. 

Volunteer, donate, or simply support research today. 

In loving memory of my Nan Joan, Nan Wo Wo, Nan Rose, and Nan Batt.