I’m often asked for my advice, as a former carer to my dad, for families with loved ones who have dementia now.
The most recent example of this was my guest appearance on Pippa Kelly’s ‘Well I Know Now…’ podcast.
Pippa’s mum had vascular dementia like my dad, and our lives since our parents have lived and died with dementia have had many similarities. We’ve both gone from knowing very little about dementia many years ago to being campaigners and writers on the subject, motivated by wanting to help other families going through what we did.
Prior to recording my podcast with Pippa, she asked me for three or four things I know now that I didn’t before my dad’s dementia – my learnings, for want of a better expression. I said:
- To live in the moment
- To appreciate the small things
- To make the most of the time you have with a person who has dementia
- To never give up
As Pippa pointed out during my interview, everything below ‘live in the moment’ is really encompassed by that phrase, which reminded me just how powerful that piece of advice really is. It’s the one thing, more than anything else, that can provide those moments of comfort, happiness or connection that a person with dementia and their family crave.
What is living in the moment?
For a person with dementia, living in the moment is recognising and enjoying those times when the person can do something they want to do, or a moment when they feel more lucid, in-control, or as Wendy Mitchell (another of Pippa’s guests) puts it, a moment when they’ve outwitted dementia. The moment may not last long, and it may be forgotten soon afterwards, but in that moment there is a feeling that dementia has taken a back seat.
For family members, living in the moment is about enjoying times when you can connect with your loved one, perhaps because you’ve shared something together or enjoyed something together. It may be an emotional experience, but often they are happy emotions not sad ones. It’s important to stress that these moments may involve really small things, and the risk is that we miss them because we are so caught up in our thoughts, day-to-day stress or are just too exhausted to recognise them.
Reflections on moments with my dad
I talk in Pippa’s podcast about a couple of special moments with my dad:
“With my dad, when he could no longer hold a conversation he could still sing a song. Those little moments, where we would finish a song together, and we would just smile at each other, there were no words needed, it was just that moment.”
“We would take my dad outside, wheeling him out into the spring or summer sunshine with his panama hat on, and just sit outside. It was a beautiful rural location, so you’d get some birds, occasionally a squirrel or rabbit in the garden, and sit and take in that moment.”
Taking notice and being
I go on to talk in the podcast about the Five Ways to Wellbeing, and in particular ‘Taking notice’, which I feel is so impactful when supporting a person with dementia. Pippa and I talk about taking notice in our lives now – Pippa through her dog walks and me through the observations of my 6 year old.
As Pippa points out, so many people who’ve had loved ones with dementia highlight that one of the positives is that dementia can sometimes bring you closer to your loved one because everything has to slow down. You will find yourself just sitting and being with that person, and you never normally do that.
Pippa’s observation is so true. I spent hours and hours just being with my dad. Often with very few words shared, just holding hands, dad dozing, or though sharing a cuppa or a meal. My life now is so full of noise and being endlessly busy that those times with my dad feel even more precious.
We all need to find ways to slow down, take in more of our surroundings, turn down the noise, switch off those feelings of needing to do more and go faster, and just be. I know I certainly do.
For families with loved ones who have dementia now
If you are supporting a relative with dementia, you may be caught up in trying to support their needs, fight for funding, search for services, or have what feels like a million and one things to do in a tired, physically and mentally exhausted state. However, as I said to Pippa, knowing your loved one has a terminal diagnosis means time is inevitably limited. Make it count in moments, not memories of constant battles. Whilst I remember all the difficulties and struggles I endured with and for my dad, it’s the moments that mattered with him that made all those hardships bearable at the time, and that give me the memories that help me cope with his loss now.
I’m so glad I absorbed the time dad said to me: “Thank you for everything.” And the occasional times he took the spoon from me to feed himself. And so many more moments that have stayed with me from that day to this; precious memories that mean so much more now that dad’s gone and I know there will never be any more.
So live in the moment. Find those times when the clock can just stand still because you want that time to stay forever. Those moments may be few and far between and they may not last long, but they are incredibly special.
Until next time…