Appreciate what you shared about having a safety net. Something we don’t have in my family. I do want to share something with you. I have a newsletter for people with dementia and caregivers of. I would love to have you join us. (I can’t see what I’m writing here because the like/comment/restack buttons are in the way. Anyhoo, I write the newsletter from my viewpoint as a person with dementia and give information for educational purposes. I hope our paths cross again.
You are a much kinder human being than I am. I also can't imagine how Hackman must have felt alone for who knows how long. Did he even know? Mom gets lost in her invisible community at times. How badly did the wife feel when she realized she was beyond help and he'd be left alone? I have a pretty good safety net with Mom's aides and neighbors and friends and I've called on them when I needed to. But, still you are kinder than I. I went on an all out rant about people who ask. https://jodishdoff.substack.com/p/hows-mom-you-ask
Hi Pam, I hear you but I'm also cringing at those phrases 'tell me how I can help...you just need to ask...take forget to take care of yourself too,' mainly because even if it's meant well and from a place of love - it's still painful as extra burden/emphasis on us.
This feels less 'judge-y' less emotional burden, and more 'empowering.' There's no 'Right or wrong' but for those who are not caring they may not understand that 'those words' puts MORE 'should-ing' onto us. We can help them by giving them specific tasks. Easier for them AND us...This ALSO puts a reality check on those who will walk-the-talk.
I'm sorry to say that there were a few people I had assumed would help who didn't, and those who I asked for help and then became an issue because I wouldn't 'let them do things their way' which of course is better/faster/easier...- for who, them or us....OR those who wanted to be 'right' and could show me - instruct and play hero... (sorry nerve touched!)
I completely understand the frustration of needing to ask for help being one more thing on our long to-do lists. But I also don't want unsolicited and unwanted/unneeded help, which we have to be ready to accept if we expect our friends and family to step up without being asked. Perhaps the best compromise is for our safety net people to ask if a specific type of help would be welcome--and then be open to our alternative suggestions?
I'm SOOOO With you in your comment - take a look through Sarah's article, her words helped validate my explicit requests to people...for me, when I was already burntout some people made things more trouble than help. Support from NON-friends/family that I found helped a lot.
I just don't 'expect' friends/family to step up without being asked. I tell/ask explicitly.
Your situation may be very different so pls feel free to ignore this!
I see you. I know you and what you’re dealing with. I don’t know how to be part of your safety net from afar other than to hold you in my thoughts as much as I can.
I did not have a safety net. In fact, I had family members who did their best to make things even harder for me while I was caring for my 92-yr-old Mom, who suffered from Dementia. The knock on my front door from two officers who had come to do a “Wellness Check” on my mom was indeed quite the shock. Especially after I had struggled in vain to get the police, Adult Protective Services, or anybody to care or help me get my mom out of a literal hostage situation with my crazy brother. Nobody cares about old people. Nobody.
I'm so sorry you had to deal with this. I have many friends who've been reported to social services for elder abuse because someone thought they weren't caring for their loved one the "right" way. Caregiving is hard enough without the interference of people who just make it harder.
Appreciate what you shared about having a safety net. Something we don’t have in my family. I do want to share something with you. I have a newsletter for people with dementia and caregivers of. I would love to have you join us. (I can’t see what I’m writing here because the like/comment/restack buttons are in the way. Anyhoo, I write the newsletter from my viewpoint as a person with dementia and give information for educational purposes. I hope our paths cross again.
You are a much kinder human being than I am. I also can't imagine how Hackman must have felt alone for who knows how long. Did he even know? Mom gets lost in her invisible community at times. How badly did the wife feel when she realized she was beyond help and he'd be left alone? I have a pretty good safety net with Mom's aides and neighbors and friends and I've called on them when I needed to. But, still you are kinder than I. I went on an all out rant about people who ask. https://jodishdoff.substack.com/p/hows-mom-you-ask
I don't know if I'm kinder or just lacking the energy it takes to get angry. 😂
Hi Pam, I hear you but I'm also cringing at those phrases 'tell me how I can help...you just need to ask...take forget to take care of yourself too,' mainly because even if it's meant well and from a place of love - it's still painful as extra burden/emphasis on us.
One of the best lived-experience articles I read was by Sarah Coomber (hope it's ok to share here: https://sandwichseason.substack.com/p/learning-to-ask-for-help. She wrote about HOW we can ask for help.
This feels less 'judge-y' less emotional burden, and more 'empowering.' There's no 'Right or wrong' but for those who are not caring they may not understand that 'those words' puts MORE 'should-ing' onto us. We can help them by giving them specific tasks. Easier for them AND us...This ALSO puts a reality check on those who will walk-the-talk.
I'm sorry to say that there were a few people I had assumed would help who didn't, and those who I asked for help and then became an issue because I wouldn't 'let them do things their way' which of course is better/faster/easier...- for who, them or us....OR those who wanted to be 'right' and could show me - instruct and play hero... (sorry nerve touched!)
I completely understand the frustration of needing to ask for help being one more thing on our long to-do lists. But I also don't want unsolicited and unwanted/unneeded help, which we have to be ready to accept if we expect our friends and family to step up without being asked. Perhaps the best compromise is for our safety net people to ask if a specific type of help would be welcome--and then be open to our alternative suggestions?
I'm SOOOO With you in your comment - take a look through Sarah's article, her words helped validate my explicit requests to people...for me, when I was already burntout some people made things more trouble than help. Support from NON-friends/family that I found helped a lot.
I just don't 'expect' friends/family to step up without being asked. I tell/ask explicitly.
Your situation may be very different so pls feel free to ignore this!
Also you may like to watch this by Megan Devine - it resonated a LOT with me: https://www.carermentor.com/p/megan-devine-how-to-handle-the-advice?r=a9y7d&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
Thank you for writing this, Pam.
A poignant reminder of the care caregivers need. No one truly understands until they’re in it, but thank you for shedding much needed light.
Very important topic. Love the way your therapist reframed that.
This book came to mind - might be of interest: https://www.biblioasis.com/shop/non-fiction/memoir/be-with-letters-to-a-caregiver/
I forgot to tell you my newsletter is Falling Leaves. Judibailey1@suback.com.
I see you. I know you and what you’re dealing with. I don’t know how to be part of your safety net from afar other than to hold you in my thoughts as much as I can.
Holding us in your heart is an important part of building the net. ❤️
I did not have a safety net. In fact, I had family members who did their best to make things even harder for me while I was caring for my 92-yr-old Mom, who suffered from Dementia. The knock on my front door from two officers who had come to do a “Wellness Check” on my mom was indeed quite the shock. Especially after I had struggled in vain to get the police, Adult Protective Services, or anybody to care or help me get my mom out of a literal hostage situation with my crazy brother. Nobody cares about old people. Nobody.
I'm so sorry you had to deal with this. I have many friends who've been reported to social services for elder abuse because someone thought they weren't caring for their loved one the "right" way. Caregiving is hard enough without the interference of people who just make it harder.