I love this metaphor, Pam. That's just what it feels like - like we've been transported to a different planet. Everything from the gravitational pull we feel, to the air we breathe, to the way the stars appear in the sky is different. Yes - adaptability is definitely what's called for here. Thank you.
So helpful- planet care. I concur you learn very quickly on Planet Care is that nothing will stay the same for long—that’s the nature of a degenerative disease, and it’s why resilience is useless here
Last evening I forgot about a long-scheduled dinner with former work colleagues, a delayed retirement celebration for several folks. It was on my calendar. It would have meant finding extra care for my wife while I was gone. I knew that would not be hard when I RSVP'd yes to the invitation. Then I forgot about it. In the middle of cooking dinner I received a text saying the dinner had changed locations, see you there. I switched to my calendar app and sure enough, there it was. Dinner with friends on a Tuesday night is definitely not part of our normal schedule. Every deviation from the schedule requires at least double the effort, both in making care arrangements as well as simply remembering there's a deviation coming. I don't like disappointing people. My over-taxed executive functioning capability makes these lapses more and more frequent. I'm learning to accommodate my own lapses.
Oh, Jill--I've definitely been there. I actually cancelled an appointment last week because a deviation from the schedule was just too much for me to accommodate. The best we can do is the best we can do. Big hugs to you.
Thank you for pointing out the limitations of the word resilience. It is similar to that platitude "This too shall pass." Every time I see that posted, rage boils up in me. No, not everything passes. My chronic autoimmune disease will not pass. I think people just say that to make themselves feel better. I believe that is why they say "You are so strong." My aunt said that to me yesterday as I sat in the ER with my dad after having been with my mother in the memory care unit where both my parents live as of two weeks ago. Am I strong? Well, I'm still upright, still stepping and breathing. And I'm tired from years of my mother's mental illness that has kept me from a "normal" existence. So, cheers to us for our adaptability.
Honestly, on my less charitable days I think "You're so strong" means "You don't need my help." (Same with "This too shall pass.") It's a thing people say so they can feel like they're being supportive, instead of offering to support you in practical ways.
This resonates with me deeply, Pam. Just after Labor Day 2018 my husband was diagnosed with incurable cancer (prognosis 3-5 years). I had been living on planet Pandemic Groundhogs Day for over a year when the rest of the world caught up. I felt a little less lonely in my isolation until the fall of 2020, when people started slowly returning to planet Earth. When my husband died in August 2021 I was also called "strong" when in reality I didn't have a choice but to continue living. Our son was nine years old, and he needed me, so I kept going. It's almost four years since my husband died and I still have not returned to planet Earth. I don't know if I'll ever get back there, but for now I'm okay exploring brave new worlds.
I'm so sorry for your loss (and your son's, of course.) Just today I started wondering whether I'll ever be an Earthling again--I feel like I wouldn't know how to live among its full-time residents anymore. Time will tell, I suppose.
Thank you Pam. I've come to believe that Earth is overrated, and that all the enlightened people who've been through some stuff live out here with me, among the stars.
Thanks, Pam I understand. I used to say that Mum, Dad and I were in our own little love bubble, fragile yet somewhat cocooned. For us, Dad's congestive heart failure made everything more edgy, fractious. The bubble burst a lot.
I was a little worried about where the events were leading in your piece. Weekends, bank holiday weekends (UK) and any 'holiday season' is stressful with pharmacies closing, doctors out of office and trying to rearrange care support. So, I'm relieved there was no major issue...although every rearrangement/admin/change is like that Friends episode..'the one with the sofa' - 'Pivot. Pivot. Pivot!'
I think we have many strengths and talents that we need to employ daily, to a greater degree than most people's usual day. I'm just a bit loath to say 'superpower' because I don't like to put 'hero' and 'carer' together...we are perfectly imperfect humans who can only try our best; we burn out perhaps faster due to the intensity of caregiving.
For me, this is why I appreciate exchanging caregiving insights so much—other caregivers get it and we feel validated, instead of having to justify/explain stuff. Does that resonate? (Feel free to ignore if not, everyone's situation is unique.) xo
Thanks for this thoughtful response, Victoria. I totally understand the hesitation to use “superpower” in connection to caregiving--I’m not a hero or a warrior or a saint or any of the other things people often call me. But I do think adaptability is the only thing that makes life on Planet Care possible, and developing this skill has shown me that I’m capable of doing things I didn't know I could (even in parts of my life that extend beyond caregiving.)
I love this metaphor, Pam. That's just what it feels like - like we've been transported to a different planet. Everything from the gravitational pull we feel, to the air we breathe, to the way the stars appear in the sky is different. Yes - adaptability is definitely what's called for here. Thank you.
So helpful- planet care. I concur you learn very quickly on Planet Care is that nothing will stay the same for long—that’s the nature of a degenerative disease, and it’s why resilience is useless here
I know this feeling somewhat. Thank you for taking time to write about yours and Mike's journey. I appreciate the distinction too. Very helpful. ❤️
Last evening I forgot about a long-scheduled dinner with former work colleagues, a delayed retirement celebration for several folks. It was on my calendar. It would have meant finding extra care for my wife while I was gone. I knew that would not be hard when I RSVP'd yes to the invitation. Then I forgot about it. In the middle of cooking dinner I received a text saying the dinner had changed locations, see you there. I switched to my calendar app and sure enough, there it was. Dinner with friends on a Tuesday night is definitely not part of our normal schedule. Every deviation from the schedule requires at least double the effort, both in making care arrangements as well as simply remembering there's a deviation coming. I don't like disappointing people. My over-taxed executive functioning capability makes these lapses more and more frequent. I'm learning to accommodate my own lapses.
Oh, Jill--I've definitely been there. I actually cancelled an appointment last week because a deviation from the schedule was just too much for me to accommodate. The best we can do is the best we can do. Big hugs to you.
You nailed it. My heart goes out to you and your husband. And I will be listening to the B-52s today. Always a good idea.
It's never a bad time for the B-52s.
I now have 'Love Shack' earworming me ;-)
Thank you for pointing out the limitations of the word resilience. It is similar to that platitude "This too shall pass." Every time I see that posted, rage boils up in me. No, not everything passes. My chronic autoimmune disease will not pass. I think people just say that to make themselves feel better. I believe that is why they say "You are so strong." My aunt said that to me yesterday as I sat in the ER with my dad after having been with my mother in the memory care unit where both my parents live as of two weeks ago. Am I strong? Well, I'm still upright, still stepping and breathing. And I'm tired from years of my mother's mental illness that has kept me from a "normal" existence. So, cheers to us for our adaptability.
Honestly, on my less charitable days I think "You're so strong" means "You don't need my help." (Same with "This too shall pass.") It's a thing people say so they can feel like they're being supportive, instead of offering to support you in practical ways.
yes, that too
This resonates with me deeply, Pam. Just after Labor Day 2018 my husband was diagnosed with incurable cancer (prognosis 3-5 years). I had been living on planet Pandemic Groundhogs Day for over a year when the rest of the world caught up. I felt a little less lonely in my isolation until the fall of 2020, when people started slowly returning to planet Earth. When my husband died in August 2021 I was also called "strong" when in reality I didn't have a choice but to continue living. Our son was nine years old, and he needed me, so I kept going. It's almost four years since my husband died and I still have not returned to planet Earth. I don't know if I'll ever get back there, but for now I'm okay exploring brave new worlds.
I'm so sorry for your loss (and your son's, of course.) Just today I started wondering whether I'll ever be an Earthling again--I feel like I wouldn't know how to live among its full-time residents anymore. Time will tell, I suppose.
Thank you Pam. I've come to believe that Earth is overrated, and that all the enlightened people who've been through some stuff live out here with me, among the stars.
Thanks, Pam I understand. I used to say that Mum, Dad and I were in our own little love bubble, fragile yet somewhat cocooned. For us, Dad's congestive heart failure made everything more edgy, fractious. The bubble burst a lot.
I was a little worried about where the events were leading in your piece. Weekends, bank holiday weekends (UK) and any 'holiday season' is stressful with pharmacies closing, doctors out of office and trying to rearrange care support. So, I'm relieved there was no major issue...although every rearrangement/admin/change is like that Friends episode..'the one with the sofa' - 'Pivot. Pivot. Pivot!'
I think we have many strengths and talents that we need to employ daily, to a greater degree than most people's usual day. I'm just a bit loath to say 'superpower' because I don't like to put 'hero' and 'carer' together...we are perfectly imperfect humans who can only try our best; we burn out perhaps faster due to the intensity of caregiving.
For me, this is why I appreciate exchanging caregiving insights so much—other caregivers get it and we feel validated, instead of having to justify/explain stuff. Does that resonate? (Feel free to ignore if not, everyone's situation is unique.) xo
Thanks for this thoughtful response, Victoria. I totally understand the hesitation to use “superpower” in connection to caregiving--I’m not a hero or a warrior or a saint or any of the other things people often call me. But I do think adaptability is the only thing that makes life on Planet Care possible, and developing this skill has shown me that I’m capable of doing things I didn't know I could (even in parts of my life that extend beyond caregiving.)