 Mum & I
After four turbulent years of mum living alone in London with vascular dementia, we moved her into a care home in my village. She, the glamorous diplomat’s wife, the life and soul, who had led an independent and colourful life all over the world, reduced to wandering the corridors in a state of confusion. Her distress is ours as she goes down the plug hole, her strength of character determined not to let go. It has been so important for me to seek out any possible nuggets of joy within this storm. The power of music has made a big difference- as has our sense of being supported by the care home, loved ones and local network. Over time, I’ve come to accept that mum lives on a secure wing and that however painful it is to see her in this way, life must continue and it is possible to bring joy and reassurance to her. It has been interesting to see that rather than looking back, she feels way more comforted by happy experiences in the present. The now is so important. The feelings generated by the imprint of all those she comes into contact with are real and I have learnt so many important lessons that have changed my own path pretty radically. Whilst her brain slowly, but surely, tragically dies, I am learning about life. How to deal with the good, the bad and the harrowingly ugly. How key humour and joy are in golden-right-here, right-now- moments. The details of time spent together seem to be irrelevant; the feelings generated and imprinted till next time are everything.
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TV Review: Anna Richardson: Love, Loss & Dementia I watched Anna Richardson's Channel 4 documentary 'Love, Loss & Dementia' in eager anticipation. "At last!" I thought, "someone who is going to do for dementia what Davina did for the menopause." A much needed mainstream program that would help delete the stigma and get conversations flowing. I wanted to be moved but not by tragic stories. I wanted to be inspired- to be shaken up by fascinating insights. I wanted to see a dogged, and empathetic, approach to delving into deep, uncomfortable, conversations. I wanted revelations and I wanted hope. Disappointment. There wasn't really anything particularly revolutionary about it. Nothing new, nothing radical, no novel thinking. We were given examples of families facing mild, moderate and severe levels of dementia, all desperate in their own way, all one way ticket situations. Pink haired Mary so lovingly caring for her husband Richard at home until she could no longer. She had fully sacrificed her own working life as a bespoke clothing designer and she admits that she has 'lost herself'. This cruel illness, she so rightly describes as being so difficult because it is 'drawn out over so many years' means that she has 'no resilience left' and she describes how she is 'ground down completely'. Anna Richardson responds 'noone should have to care 24/7... but she loves him'. I think Mary would agree with many of us that in fact setting them free, in this case to a care home, can be seen as one of the greatest acts of love. Distressing though it is, this is the environment that at a certain point our loved ones with dementia need. It often doesn't suit us- the guilt of handing them over, the yuk of some of the smells, the fact that residents' aren't always fully dressed.. and yet.. and yet this... is the place for them. Here they can be looked after by a team of carers whose buttons aren't being pressed trying to preserve. Accepting their new reality is one of the hardest, and most important acts of love we can offer. "The government must do more" seems to be the battle cry. Well yes, but no questions were asked of any government ministers. Plus this does give us an excuse not to become engines of our own change. We need to big up people power and focus more on the light than the darkness. Look at what the inspiring self-help Afro-Caribbean group achieved by funding their own coffee mornings for others' living with dementia. Why wasn't there a further focus on these kinds of enterprising and energising ways of approaching the situation? Turning pain into purpose. We may not be able to eradicate dementia but we can make a difference.  |
AuthorClara Hebblethwaite; Founder of The Dementia Experience Archives
May 2025
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