As part of our "I like it when..." series, we are sharing what our community likes to see, hear and feel, from different parts of their lives. In this blog, we will be specifically covering the topic of friends and families.
Being an unpaid carer can be emotionally and physically exhausting, but there are some simple things our friends and families can do to help.
To make us feel heard, improve our own health outcomes, minimise our logistical challenges, make us feel included, and simply improve our day.
What follows are genuine comments shared by our carer community.
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Who would it be helpful to share this with?
I like it when my friends and family...
1. Ask us how we are feeling
“Ask how I'm feeling (as well as showing interest in the person I care for).”
“Ask me how I am and if I need anything.”
“Include me, ask how I’m feeling and sincerely want to know.”
2. Listen without judgement
“I like it when they just listen to me and don’t try to offer advice but just let me get off my chest what I need to say.”
“The best ones, the handful, have stuck around, listened, empathised and not offered solutions for things they cannot understand.”
“I like it when my friends give me the space to be myself, and talk about the things I’ve been through without judging or trying to sympathise with things they can’t understand.”
“Listen without giving advice.”
3. Don't forget us
“Asks me to go out with them. On social media, a couple of friends have gone out. It would have been lovely for them to have asked me to join them - even if I am unable to do so. To see them out and about and to not have been asked is heartbreaking. Sometimes we need to know we are not forgotten.”
“Please don’t disappear off the face of the earth!”
“Turn up for me, give me a hug, pursue me a bit when life is so crazy demanding that I seem to disappear.”
“Understand when we’ve made plans and I have to cancel at the last minute - but still keep on inviting me to the next get-together.”
“Send me cards and little surprises.”
“Don't give up on me just because I haven't replied or called back for a while.”
“Appreciate that I like to do stuff on my own with them (without the person I care for).”
“Keep inviting me out, despite the many cancellations on my part.”
“I like it when my grandparents take the time to sit with my mum and treat her as their daughter, and treat me as their grandchild, not just as my parents’ carer.”
4. Learn with us
“Takes the time to understand and adapt to my child's needs.”
“Being more understanding would be good.”
“Takes time to learn my daughter's Makaton and PECs and 'have a go'.”
5. Help us to take a small break
“Offer help and support - to get some sleep or just time to walk in silence.”
“When a friend says "I've got my eye on her" and gives me five minutes to switch off. (needs to be a very trusted friend who completely understands that you literally can't take your eyes off of her!).”
“Offer to sit with the person I care for or run errands so I can get a break.”
“Asks if they can look after my cared-for, for an hour or 2 so I can get some sleep”
“Take over caring to give me a brief break, without me having to ask, and without judging me.”
6. Nourish us!
“Bring us food.”
“If nothing else, at least offer to make me a cup of tea.”
“Make me meals!”
“Put the kettle on... or open a bottle of something!”
“When someone cooks us a meal!”
7. Are kind and thoughtful
“I like it when my family and friends do something nice for me. It's the little things that make a big difference.”
“When friends and family continue to say hello to my daughter and make a fuss, even though they may not get any response.”
“Remember the little things. Just a little memory, joke or even passing comment can really change the whole conversation. It helps me feel more connected to them, even if I don't have the time to catch up as often as I'd like.”
“When we do attempt to go out as a family with friends, it means so much to me when a friend follows me around, so we can chat - as I follow my daughter, retrieve her from other people's tables, stop her stealing food, keep her safe etc.”
8. Are available (and tells us!)
“Step in at short notice to look after children when I need to go to A&E with my husband.”
"Reassure me regularly that I can call them if I need urgent help."
9. Offer practical support
“Drive me places for a change.”
“When my parents batch cook my daughter her special diet meals”
“Are proactive, noticing appointments, asking how they could help. Not waiting for me to ask for help."
10. Include our cared-for
“What I found hard was my eldest being invited to birthday parties and sleepovers but my youngest never received birthday party invites or offers to sleep over.”
“I would have loved my daughter to be asked for sleepovers with friends and family. Although I don't blame people for not asking. She is a lot of work and I guess it could feel overwhelming to look after her - but it would mean a lot.”
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