Memories of Muriel by Sue Buckby

Dementia UK Stats

An estimated 900,000 people in the UK are currently diagnosed with Dementia- an umbrella term used to describe a range of progressive conditions affecting the brain. This may be an underestimate, as diagnosis rates continue to increase, and the wider number of people affected- friends, family etc- is far far greater than this.

Loving someone with Dementia can be very challenging, as the disease not only begins to steal precious memories from them, but a person can change before our eyes, sometimes with outbursts of aggression or other uncharacteristic behaviour. For some, death brings a guilty relief from a grieving process that has commenced years before. I believe the more we share our experiences, the less isolating it can be, and the better we are able to keep on caring for our loved one.

Nana BW

The Real Muriel

It's been four years since we lost my Nana Muriel to Dementia. Hard to believe she has been gone that long but I remember being pregnant with my youngest at the funeral in November of that year, so it must be. However, as anyone who loves a person with Dementia knows, the gradual process of losing them began a long time before that.

I have wonderful memories of my Nana, before Dementia began to steal her from us. I have memories of her endless patience to play 'milkround' with me on long summer days spent at hers. I have memories of her insisting (as a teenager) that she still hold my wrist to cross the road. And I have memories of her wonderful home cooking- Sunday lunches with the whole family gathered, on emergency chairs, as she constantly made sure we had all we needed, even as she was told to 'just sit down and eat yours'. Nana also lived close enough to my upper school that I could dash across the fields for a home cooked lunch with her and Grandad before issuing a hasty thank you and dashing back in time for afternoon registration. I'm yet to meet anyone who makes gravy as well as my Nana did.

By the time that we began to notice the creeping forgetfulness, Nana was widowed and living alone, but with family that lived close and visited regularly. I had moved away, to university and then work, and my visits were sparser than they could have been. At first I think we just thought it was old age. Maybe eye rolls were even exchanged as we had to go over the same stories again and again. I remember introducing my Nan to my first ever boyfriend (now my husband). She was charmed, and always got the best biscuits out for him when we went to visit. By the time we got married, she had deteriorated and it was decided that her attending the wedding was just not feasible, as there was nobody with the time on the day- or more realistically- the patience and knowledge of how best to support her ('deal with her') to enable that. So we took her some cake, and showed her some pictures, but I am grieved now that she wasn't there to share in our joy, especially as she has so willingly adopted my husband as an extra grandson.

Fading Away

As time marched on, and falls and vulnerability increased, Nana was no longer able to stay in her own home, even with regular carer visits. There is much guilt associated with a loved one moving into a care home, and it is undoubtedly scary for someone with a disease like Dementia to be uprooted from the familiar. In this situation, physical safety took precedent over emotional safety, and the decision was made.

I was so fortunate that, even though visiting my Nana towards the end of her life carried a level of apprehension that we would be strangers to her, she often recognised me. I had to reintroduce my husband a few times, and accept the repeated telling off that I hadn't let her know about him, but she often came back to me, even just for a few minutes. And, even if she didn't, she was always gladdened by a visit, especially if it involved my toddler daughter. (In my experience small children and older people is always a heart-warming combination.)

Muriel was a nurturer and, I hope, as well as inheriting her chin, I have gained that quality too. I have some wonderful memories, and not nearly enough photos. As much as Dementia gradually stole her away from us, her wonderful legacy remains and she will always be cherished. But, if I could go back in time, I wish that I had known more about the disease and how to 'be' with her. I think, if I had been able to attend a session, like TNT's Dementia Awareness Workshop, I would have felt less afraid and inadequate, and may have loved her more fully right until the end.

Further Support

If you care for someone with Dementia, and would like to find out more about how to support them, there are some great resources on the Dementia UK website. Also, our Older Person's enabler at TNT, Paul Howard, is also a wonderful source of knowledge and support and can be contacted on 07827 291725. Paul has also produced a series of Dementia Awareness videos, which can be viewed on our YouTube page.

As mentioned above, TNT have an upcoming Dementia Awareness Workshop at Unity House on 10th November, aimed at helping churches think through how we can be more welcoming and accessible to those with Dementia and their families. Email to book your space.