Life-lines for life’s shifts
Charities, Chums, Connections and Channels. I honestly don’t think I’d have found the beauty in dementia quite so easily without every day support, self-help groups and the stories people share.
Theme: The Broken and Burnout
Quick Take:
Everyone’s support needs are different - groups that are for both sufferer and carer didn’t work for me but a local lunch club became a life-line - giving Milly connection, routine and purpose whilst giving me guilt-free respite.
Connection or simple companionship is preventative care and not a last resort. Introducing gentle social visits early eases loneliness, builds routine and it gave familiarity before crisis - so when Milly came home from hospital she had people around her that made her feel safe.
Gentle and quiet education from on-line groups has not only reassured me but reminded me I’m not alone.
Charities
There are many places to find guidance and comfort - lunch clubs, coffee-and-cake meet-ups, day centres, podcasts, websites, Facebook groups, local self-help groups. Some support is there for both the person with dementia and the carer, but I find this hard work. Firstly my mother doesn’t want to go and as I’m with her she’s able to constantly ask when we’re leaving, and secondly, I need a break and chatting about the highs and lows isn’t much fun with people I don’t know very well and I’m still ‘on duty’.
For me, a local lunch and social club has been a real lifeline. This is a charity that Milly goes to for three or four days a week, giving me a few hours of much-needed respite. At the same time, it gives her the connection she needs - stimulation, chat, laughter.
It’s so important that she’s part of something outside her own thoughts.
The club is run by two fantastic women. They co-ordinate an amazing team of volunteers who greet Milly like an old friend each day. They make her tea, offer biscuits, gently encourage her to join in activities, and serve up the most wonderful lunches.
The lovely managers are always calm, forever smiling and nothing is a problem. They look after me as much as Milly by making no demands and always trying to make my life easy. If Milly isn’t up for coming in, no problem. If she needs extra help, it’s fine.
It took some encouragement getting my mother there in the first place and I credit their non-demanding and accepting atmosphere for making this something she enjoys. Milly might try to get out of it (nearly every day!) but she always comes home with a smile and I can tell she feels safe and cared for.
She calls it ‘playgroup’, maybe a nod to her years as a nursery teacher. It’s a bit cheeky, but it fits. What she doesn’t quite realise is that everything she does there - painting, crafts, quizzes, singing, flower arranging, bingo - is vital. It gives her exactly what does her good: companionship, stimulation, and a stress-free place to belong.
They even organise a bus, driven by another group of cheerful volunteers, to pick up and drop off which was incredible help for when Milly was more independent. What a service! I feel so lucky to have it.
Chums
My family and friends are quite simply wonderful - Milly wouldn’t be living with us, without them. Always there and listening patiently as I go on (and on).
Connections
Very quickly after my father died, I realised something important: Milly wasn’t just grieving - she was frightened. And I knew that fear was linked to her memory problems and that it would quietly but significantly worsen her mental health and make more demands on my time.
So I acted early. Within months, I organised twice-weekly visits from a local care company who truly understood the value of companionship. These weren’t rushed care calls or task-focused visits. They were social visits - someone to gossip with, make a cup of tea, encourage a short walk, and gently anchor her day.
I framed it as physical support or personal training, because there was no way Milly saw herself as needing carers or companions. Dementia, after all, comes with denial - and pushing against that would only have caused distress. This way, the support slipped in kindly and without fuss.
Some people were surprised I organised this so quickly but I wanted routine before crisis. I wanted familiarity before fear. And I wanted to know that when I couldn’t be there, someone was popping in, bringing a safe routine and keeping her connected to the world.
Companionship isn’t a luxury. It’s preventative care.
It helped far more than anyone might realise. When I needed to step away at short notice, when we went on holiday, and when she fell and needed post-operative care and gentle rehabilitation, they were already there for Milly.
Within a year of being widowed, Milly had found a steady, supportive rhythm: two days a week at her lunch-club charity and two companion visits at home. That balance mattered. It protected her mental health - and it protected mine. I worried less and coped better, because I wasn’t constantly on high alert.
As time has passed, this kind of social connection has become increasingly vital to Milly’s wellbeing. Maintaining friendships grew harder; she had to work so hard to appear as though everything was fine. That effort left her exhausted and increasingly anxious. The companion visits and the lunch and social club gave her so much of what she needed, without that burden.
It was about being present for her and providing a sense of connection and comfort without the pressure of deep conversations or shared memories. This type of socialising is more meaningful and fulfilling for Milly now.
Channels
I also rely on a couple of online groups. I scroll through them a few times a week, learning from other carers and from the brilliant admins who hold everything together. They’ve taught me about my rights, Milly’s finances, and what the NHS or local authority can - and can’t -help with.
There are some unbelievable families out there, finding their way through the maze. I’m in awe of them.
A big shout-out to these Facebook groups:
Dementia & Alzheimer UK Carers Group
and
Safeguarding Futures Health & Social Care Support