I’m a telephone volunteer befriender with Alzheimer Scotland.
I originally signed up to do community befriending with someone who had dementia. The idea was to meet up one a week and take them out to places they liked or just for a coffee or do an activity they enjoyed like knitting or whatever but this never happened as the pandemic hit just before I was due to start.
After a while, into the pandemic, I was then asked to do telephone befriending instead. At that point I specifically asked if I could befriend a person caring for someone with dementia instead as that was where my own ‘lived experience’ was for both my parents and, I also worked closely with people who cared for someone with dementia for just over 2 years .
Family carers struggle very much on these paths, emotionally and psychologically as they try to do the best they can negotiating both services and what they need to do at the different the stages of the dementia. All this as well as an early and prolonged period of loss as the person they know changes. I know from my own experience of caring for my mum with dementia and listening to others just how acute the need to be able to ‘unload’ or get advice and help for a family carer can be. Or just the chance to talk about it or some time just to chat about ‘normal’ things not related to the caring experiences.
I was matched with a lovely lady who I call every fortnight and chat for up to an hour or so. Originally it was once a week but we reduced it to fortnightly early this year.
My befriending partner is well into her 80s herself and she cared for her husband who had advanced dementia. She has also had recent health issues. Sadly, her husband passed away around Christmas in 2020, about 6 months after we started chatting.
The first 6 months of lockdown were very tough times for her and the family because of the transition from care in the home to residential care and all the restrictions on visiting acute dementia units at that time. Also, she had found caring for him at home challenging as the dementia progressed. This was the stage they were at when I began the weekly telephone calls. Looking after someone with advanced dementia as it progresses, as many people who have experienced this will know, can be an emotional roller coaster for the main carer, even with good home care support in place and a very supportive wider family network as was the case in this situation.
I was able to listen to and also give some emotional support, as I too have cared for a loved one with dementia through those stages and experienced how it feels during the transition to residential care. I also was aware of the support available to carers like the Alzheimer Scotland's Helpline and the local Alzheimer Scotland dementia support services.
I felt well supported by the local Alzheimer Scotland team and very much by my Volunteer Coordinator, Lorna, and the local Dementia Advisor in area. There was a system to flag up any concerns I had from calls if I felt my befriending partner needed more support, which I did on at least one occasion and, immediately when her husband passed, I let the team know as soon as I could. I checked with her how much she wanted me to continue to call and how much space she felt she needed. Despite the serious and profound times I have just described for my befriending partner, the befriending has been, and continues to be, just so much more than around what was going on for her as a dementia family carer. It was not just all about these hard times. Of course, these profound life experiences for her have been well woven into the friendship and conversations we have had.
A big part of being a ‘befriender’ I think is to try to judge when the person wants that to be the central focus or when they want complete respite from even thinking about dementia never mind talking about. Listening well to those cues, as ever is key.
We have chatted regularly for almost 2 years now. I feel we have become good friends even if we have never met face to face. And that we ‘get’ each other. We talk about all sorts things, the area where she lives which I know quite well too, (having been brought up just up the road in a neighbouring local authority area), her family and family events, much about her childhood, her parents and grandparents, memories of the war, animals in the family, her career and her voluntary work, her current interests like knitting, crafting, bowling and places she has travelled to, her values about life, her church and lots about her family who clearly mean so much to her, as does she to them. And many memories about her life and experiences with her husband and their story of meeting and building their life together.
We laugh at things, share our memories of places and experiences in common, tell each other what we’ve been up to, what our trips away staycationing have been like. And that’s just an inkling of our wide and varied and stimulating conversations.
It has been a privilege to get to know this resilient, dignified, warm and inspiring woman coming through what has been a very deep and profound life experience caring for her husband with dementia, his passing and then her stepping forward back into her life and adjusting with such strength and fortitude, drawing on her values and faith and just the way she was brought up ‘to get on’ with life. Her attitude and approach reminded me, in so many ways, of how my own mum also approached life after my Dad passed (he also had dementia) and how she readjusted and lived a good, active contented life for almost 20 years more. We also shared companionship and reassurance through our long conversations when we were in the strictest of lockdown periods. I think we both found the hard lockdown of late winter and early spring of 2021 tough, each for our different reasons - yet we cheered each other up and found ways to share positivity for the worst of things to pass and get better with the situation and our experiences of vaccinations and the ever changing covid rules. Her strength and the matter of fact way she coped with ‘getting on with it’ having gone into that lockdown period in profound bereavement was really an inspiration to me and reassuring and calming for facing my own personal fears around the pandemic, which many of us were feeling at that time. I feel it has been very much a ‘two way’ support and friendship.
Whatever the need for friendship and support or reduced isolation is from any family carer, I know without any doubt, it is deep and much needed. I reflect now that the decision to befriend a carer by phone and the unique opportunity to get to know my befriending partner was the right one for me and an experience I have valued very much. I think from what she had fed back it has been valued by her too.