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Thank you for this excellent article and the many great links and resources. I have been through caring for parents and friends, and you bring up such key points. I live with multiple sclerosis and when I was single there were times I needed to hire caregivers. There’s an art to receiving care also. I noted your comment about the tendency in the west to gloss over the realities. I think that’s true to some extent. I have a masters in Rehabilitation counseling. I used to do workshops on adjusting to change and loss associated with chronic illness ir disability. I wrote a workbook (around 100 pages) that helps people work through tasks of grieving associated with health issues/disability. I found some people very grateful and ready to have a space to acknowledge losses and changes they have experienced. But one MS support group leader crossed her arms and said she didn’t have any losses. “I have MS but MS doesn’t have me,” she said along with other platitudes. Unacknowledged grief is a source of stress. But denial is the mode some people prefer to hide behind. Of course I honor people’s individual perspectives and process. I’m in the US.

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Hi Susan, Thank you so much for taking the time to write this comment. I appreciate your perspective as I'm sure many others will too.

YES 'There's an art to receiving care also' - HOW TRUE! I say this in capitals because even the most mild-mannered, accepting people who are in pain may struggle to ask/receive care. An excellent point!

I hear you while I wrote that in the 'West we tend to gloss over the realities', that is a broad generalisation and stereotyping considering that there are highly diverse and varied attitudinal reactions to health issues/disabilities. So yes, I agree being curiously open-hearted and respecting individual's feelings/attitude is essential for connecting.

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I am very glad to have come across your writing this morning and delighted to connect. I love that you have put so much heart into a topic that will touch most of our lives at some point. I think about the anguish I have felt at different junctures when I felt needed to help with caregiving while at the same time living with a challenging condition that doesn’t take vacations at just the right times. I can’t always see to drive confidently across distances. When my dad was dying (the time stretched on over several years as he fought cancer), I did what I could to help. I’m thankful for a brother who pitched in all he could as well. Caregivers need love and support. People are often stretched farther than they could have imagined to serve loved ones. Your comments about passwords and permissions hit home too. It’s so important to simplify these things before a crisis hits.

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Thank you for your kind words of support Susan! ❤️

I'm sending over a big hug of understanding and empathy - we are both expert linguists in the caregiver language ;-)

I really feel for all you've been through and go through now with your condition.

Yes, I felt like an elastic band that kept getting stretched and stretched and when I thought I would snap and couldn't go possibly go further, I did, but I was so scared of 'snapping' that I became an (uncertified) expert at emotional agility and disciplined myself into becoming fitter...partly for myself, but more to keep going!

I'm so glad we're connected too! I'm saving our exchange for my notes and to try to keep close! Thank you.

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Ah. Much appreciation for you. Wish I could give you a big hug as well.

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Received! Thank you for subscribing ;-)

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As I read, the thing that kept ringing in my ear is how crucial it is to be truthful about how it all is and feels. The parts that are breathtakingly beautiful and the parts that are so deeply painful, and everything in between. That seems to me to be a huge part of being able to exist in these roles, especially the one of caregiver. I’m so appreciative you mentioned my piece on walking amongst these other wonderful resources.

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Thanks, Kaitlyn. You're very welcome - movement, common humanity, and mindfulness are core elements of self-compassion. I appreciate your observation of what resonated with you. That's a really great point!

I guess, this is why mindfulness and self-awareness can give us the grace and presence of mind we need to elucidate how we're really feeling for ourselves.

I think we may/may not want to articulate our truth of what caregiving feels like to others if we're second-guessing how these 'truths' are received—there are several social biases and false-beliefs out there. Just as mothers have battled social norms, other caregivers are raising awareness and changing the caregiver language. I hope mindfulness and self-awareness enable everyone to connect and communicate more effectively, so we can help each other in our communities.

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Totally. I think people conflate talking about the hardness of caregiving with how we feel towards those we care for. Which on some level I get how it’s hard to parse them apart but I think if we are real with ourselves, they are often quite separate.

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Yes, and given all the situations I read about on the different carergiving forums, all of these very human dynamics are compounded, aggravated and inflamed when a medical crisis happens. It's why my 1 priority recommendation to everyone is start small discussions asap, before crises happen, to evolve and build the discussion, and shift dynamics.

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That is such a good point. Preemptive.

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Absolutely - in the UK, Wills, Power of attorney (Finance, and the other is health) and understanding wishes for care...

video in UK https://www.carermentor.com/p/planning-ahead-helping-a-loved-one?r=a9y7d&utm_campaign=post&utm_medium=web

Some US - eldercare discussion resources: https://www.carermentor.com/p/the-eldercare-discussion?r=a9y7d&utm_campaign=post&utm_medium=web

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Thanks, Victoria! I appreciate you linking to some great resources and will check this out. Glad you made it through Dad's birthday week!

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Thanks, Cherie! I try to stay ambivalent but open in that week. It's always interesting to see what appears. These articles certainly struck a memory-chord - not exactly a harmonious or comforting melody but loud resonance!

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