This month, someone I consider a friend, met via Twitter, lost the much-loved father she’d been caring for during his journey with Lewy Body Dementia. She’d been a dedicated carer – to the detriment, at times, of her own health. I’d linked with Wendy on a number of occasions, recognising her personal journey and the carer role with which I was so familiar.
For those who don’t know, I cared for my own mother during her thirteen years with dementia – initially vascular, but probably mixed dementia in the later years. Throughout the first ten years, she was in a little flat near me and I was her main carer – indeed, her only carer for most of those years. For the final three years she was in a care home, two minutes away; I continued to be heavily involved in her care there on a daily basis.
During my own mum’s journey with dementia, my aim was to give her the best life possible. She had lots of happiness, much of which she instantly forgot, but I observed how different her demeanour was several hours after happy activities and I knew the beneficial effects lasted well beyond the memories – so I constantly set the bar high.
When I started that journey with her, my children were nine and seven; when the journey ended, my children were both students. At the start of the journey, I was a secondary school teacher; by the end of the journey, I had no salary at all and was leading the Butterfly Scheme. During the journey, I’d only accepted that 24-hour care was needed when my own health gave way due to the strain; that was probably the first stage of grief for me, learning to hand over some of the care to others (although I now recognise it allowed me to be the daughter nobody else could be, whereas others could do the things which had been preventing me from doing what only a daughter can do).
As a carer, “me time” can be in very short supply. Whilst you might well retain friends, you can stop being part of their activities and get-togethers. When you emerge after caring, you can find yourself adrift.
After my own mum died – even though by then she’d been in a care home for three years and my care hours were dramatically fewer than they’d been when she was in the flat – I was so entrenched in the rhythm of caring that at the times in each day when I’d usually have been with her I found myself almost paralysed, unable to use that time for anything else. I’d sit at the kitchen table and just wait until the “care” time had passed – yet I was absolutely aware of all the many things I needed to do; I simply couldn’t persuade myself to use “Mum’s time” for any other purpose. It took three weeks for me to adapt to the concept that none of my day was now Mum’s time. Three weeks!
Another layer of grieving which can be very different for those who have cared for someone with dementia is thinking back to before that care period, or even the earlier stages of caring; the care can have been so all-consuming and role-transforming that there hardly seems to have been a time before that. I was so glad to see Wendy on Twitter, recalling happy trips to a Christmas market with her dad; our loved ones deserve to be remembered for all they’ve been to us, not just the person they were at the end of their lives – but that’s often so hard to achieve.
So, if you know someone who is bereaved after being carer for a loved one with dementia, please be aware that they may need more support than you think. They may no longer feel involved in their friendship groups and may need others to actively bring them back in, or even invite them into new friendships. They may not be able to remember their loved one before the dementia, so your anecdotes might well be a key to unlocking those memories. They may feel they’ve lost their purpose – but showing that you value them, and why, can really help.
Most of all, I think it’s worth simply acknowledging that they’ve not only been bereaved, but are experiencing a massive role-change – because they may not even have acknowledged that for themselves. I sincerely hope that Wendy – and others in a similar position – can find comfort in knowing how well they cared, but also that they are supported in their change of role.