Hi, I’m Sally. I returned to the UK after 25 years overseas to look after my father. We had two years together before he passed at the end of February this year. I am still processing the whole experience.
There is so much to say about this week’s discussion. I would like to begin with a general observation regarding questions that hit us sideways or comments that lack compassion and insight. I have noticed throughout my caregiving journey that while some people mean well, there are those who might ask how we are doing as carers, but are completely incapable of understanding our experience. There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough. Over the past few months I have gained some clarity and can see these conversations for what they are. There are people who just don’t get it, and no amount of words will help them get it. They will have to walk in our shoes to understand. This is one of the reasons why I began sharing on Substack. It was a great outlet to be able to share the reality without being accused of complaining about how hard that reality is.
With regard to Kerbie’s experience, my heart aches when I read about the difference between caring for your dad and your mum. Your dad sounds so similar to my precious daddy. I feel for you when I read your words about your mum. It must be so confronting trying to care for her while having all those other feelings bubbling up at the same time. Like you said, you have no idea which version of your mum is going to turn up on any given day. All I can do is cheer you on from the sidelines, offer you words of support and prayers of comfort and tell you that you are doing an amazing job. You are doing what most people choose not to do.
Hi! I'm Adrian, living in the US West coast and I write about the invisible work of caring for an aging parent. I've been doing so for over a decade with Mum and I write about our experiences in a long-distance situation.
You're absolutely right to be frustrated by that question. I feel the word "should" can be quite loaded as it anchors around an unvalidated expectation versus letting the person being asked to describe their situation.
Some individuals don't realize that care changes over time — like anything it isn't static and I'd say that someone with multiple health conditions is more likely to worsen or have moments where acute attention is required. And nature of aging means that at each stage, the situation asks something different from you. To both your and Kirbie's situations, care also looks very different by the individual you're caring for as well as the people around you. I recently had a conversation with a friend about her mother's cancer diagnosis and how she's watched her brother and relationship with him evolve during their journey. The human and relational element goes beyond caregiver-recipient dyad.
I think what does happen is you get better at handling the situations that come your way. After some time you've been through enough to know how to respond and not be thrown into a panic. You might become tougher, perhaps a bit more detached, and are better at handling your emotions. I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient.
Thanks Adrian! Yes, all relationships change after any diagnosis.
I think, for me, "panic' is still 0 to 100, perhaps even in a shorter time - but yes, on the outside, to someone else, I probably look tough, resilient, in control and calm. To your point, experience has taught me the processes and actions I need to take in a crisis or if a problem arises. I've gotten faster and more adept at responding in a crisis and I've MANY workarounds/creative solutions to draw on.
From one perspective, that's being more capable as a caregiver, from a personal perspective beyond being ' the carer' I need to actively reapply or find more tools to process emotions to recalibrate me as myself again - because we're the daughter/son. That's my version of resilience.
Burnout happens when I don't process/avoid my own personal experience. Like a doctor - there's only so much clinical detachment we can do as their adult child/spouse/parent-caregiver. So yep, I've become better at handling my emotions, but it's an active practice of resilience and recalibration, not an automatic outcome of repeated experiences.
Does my personal experience resonate with what you were thinking?
Hi, I’m Sally. I returned to the UK after 25 years overseas to look after my father. We had two years together before he passed at the end of February this year. I am still processing the whole experience.
There is so much to say about this week’s discussion. I would like to begin with a general observation regarding questions that hit us sideways or comments that lack compassion and insight. I have noticed throughout my caregiving journey that while some people mean well, there are those who might ask how we are doing as carers, but are completely incapable of understanding our experience. There have been times when after being prompted I have shared some of the realities of care, only to meet with a rebuttal of not counting my blessings enough. Over the past few months I have gained some clarity and can see these conversations for what they are. There are people who just don’t get it, and no amount of words will help them get it. They will have to walk in our shoes to understand. This is one of the reasons why I began sharing on Substack. It was a great outlet to be able to share the reality without being accused of complaining about how hard that reality is.
With regard to Kerbie’s experience, my heart aches when I read about the difference between caring for your dad and your mum. Your dad sounds so similar to my precious daddy. I feel for you when I read your words about your mum. It must be so confronting trying to care for her while having all those other feelings bubbling up at the same time. Like you said, you have no idea which version of your mum is going to turn up on any given day. All I can do is cheer you on from the sidelines, offer you words of support and prayers of comfort and tell you that you are doing an amazing job. You are doing what most people choose not to do.
Hi! I'm Adrian, living in the US West coast and I write about the invisible work of caring for an aging parent. I've been doing so for over a decade with Mum and I write about our experiences in a long-distance situation.
You're absolutely right to be frustrated by that question. I feel the word "should" can be quite loaded as it anchors around an unvalidated expectation versus letting the person being asked to describe their situation.
Some individuals don't realize that care changes over time — like anything it isn't static and I'd say that someone with multiple health conditions is more likely to worsen or have moments where acute attention is required. And nature of aging means that at each stage, the situation asks something different from you. To both your and Kirbie's situations, care also looks very different by the individual you're caring for as well as the people around you. I recently had a conversation with a friend about her mother's cancer diagnosis and how she's watched her brother and relationship with him evolve during their journey. The human and relational element goes beyond caregiver-recipient dyad.
I think what does happen is you get better at handling the situations that come your way. After some time you've been through enough to know how to respond and not be thrown into a panic. You might become tougher, perhaps a bit more detached, and are better at handling your emotions. I'm not sure if I would define that as 'easier' - but perhaps just the effect of being more resilient.
Thanks Adrian! Yes, all relationships change after any diagnosis.
I think, for me, "panic' is still 0 to 100, perhaps even in a shorter time - but yes, on the outside, to someone else, I probably look tough, resilient, in control and calm. To your point, experience has taught me the processes and actions I need to take in a crisis or if a problem arises. I've gotten faster and more adept at responding in a crisis and I've MANY workarounds/creative solutions to draw on.
From one perspective, that's being more capable as a caregiver, from a personal perspective beyond being ' the carer' I need to actively reapply or find more tools to process emotions to recalibrate me as myself again - because we're the daughter/son. That's my version of resilience.
Burnout happens when I don't process/avoid my own personal experience. Like a doctor - there's only so much clinical detachment we can do as their adult child/spouse/parent-caregiver. So yep, I've become better at handling my emotions, but it's an active practice of resilience and recalibration, not an automatic outcome of repeated experiences.
Does my personal experience resonate with what you were thinking?