This made me cry. More accurately, I sit at the orthodontist’s office waiting for my daughter in the waiting room crying because I understand this. I’ve been there with both of my parents and it’s so hard and it hurts like hell and it’s exhausting in a way that’s hard to understand and it’s lonely, too. I felt this in my bones. And I’m glad you got lasagna and soup and I think you just spoke for anyone/everyone who is caregiving or grieving or just barely hanging on one way or another. Sending you and your mom a lot of love.
Thanks, darlin'. Both parents, jeez. I'm so sorry. I was spared this with my father, which was ironic. He wanted to live forever, no matter what, and died in 2000 at 75 with prostate cancer, emphysema, spinal stenoses, having had multiple bypass surgeries. Still smoking. Still eating whatever he wanted. Mom, on the other hand, has been hoarding pills and planning her final exit since I was a kid, but the dementia took that option away from her. Thanks for the love. I can feel it. Thank goodness for community, wherever and however we find it.💙
Follow up to this post: When I wrote this it was intended for no one in particular. I appreciate all the comments and the support. So many of us have been there. The good news is, sometimes, when we speak up, which as you know, is not as easy as it sounds, we get what we need. In other words: You don't always get what you want, but sometimes, you get what you need. I wound up with a huge, deep delicious tray of lasagna (of which I froze most and will be enjoying it for a month!), a gallon of matzoh ball soup with a challah, and the offer of a massage.
Thanks. You are the sweetest. You know who you are.
People mean well, they really do. Mostly they either don't know what to say or they're freaked out by any idea of illness, any kind, really. I hope you're able to find some time for yourself and ask for what you need. I got a lovely surprise of a tray of lasagna from one reader and a gallon of chicken matzo ball soup from another! I didn't mean this as an ask, but it sure was appreciated. Any time you want to chat or vent, please, reach out. Love to you and your wife.♥️
I remember the endless days of taking care of both my parents, and yes, K agree, there are too many decisions.
It’s wonderful to hear that you are away from the house for those hours. I’m not sure where you live, but in most states there is a program called seniors helping seniors,
. When dad was at his worst, we hired a person from there, to come keep an eye on him, take him to get a haircut, cook a meal. It was only $17 per hour. It was a great program.
I also used to steal the hour when their physical therapist came calling.. I’d go for a walk, or take a swim. Those hours were precious.
There’s not much I can do from here, but I would if I could.
Another thing that we did for dad was to assign one of his friends to each day of the week, and n that day, they would take care of any dad things that came up. It helped.
Both parents? Oy. I’m lucky in that I do have help during the day. I would have crashed and burned ages ago without it. I hear from folks who are the sole caregiver 24/7 and I can’t even imagine how one remains sane. ❤️
Thanks for sharing this. A lot of the time, the impression we get from your stories is that life with mom is bittersweet and rewarding, and the reality is brutally spelled out for us here. I'm sending massive napping vibes to both of you.
Oh, it is bittersweet and rewarding. It's also exhausting and overwhelming. I imagine anyone who has ever been a parent (which I haven't) has had a point where they just want to walk away from it all, or wonder what if they'd made a different decision. But she was a caretaker (to the point of being a bit of a martyr) and I get it from her. It's a good quality, I think. And I'm sure I get more than I give, though there are times, in the middle of it, that's hard to remember. I'll take all the napping vibes (Kevin Eileen napped with me today! He's been here a year and finally starting to act like a cat!). To you too, naps and energy and downtime. Sending love. Still available to sit in NY and keep you company🩷❤️
I truly appreciate your offer. For now, when I'm there, I'm in Brooklyn and in full-on caretaker mode--cooking, cleaning, shopping, etc. Transplant phase is still ahead of us and then there might be some crappy down time when I'd be glad to have company. I'll keep you posted. <3
Damn, you lay it out like it is and I sooooo appreciate your words. Even the idea of a gift card being too much. Sending over a meal in a container that doesn't have to be returned is the best option.
Sharing your journey is teaching us how to talk about death, care for a loved one, and how to navigate within it.
Taking 5 hours a week to not make decisions and move is priceless.
It's salsa and yoga for me.
Holding space for you in my heart and sending gratitude for your words and how you care for your mom.
Oh, those five hours are essential, and such a surprise when I realized what it was about them. The extra benefits of energy, getting in shape and community are great, but the not having to be in charge of anything is the best. Thanks for reading, and saying hi here.
Thank you for your honesty, authenticity, Truths and facts-o-life…what’s amazing to me, that with ALL that is on your plate, and with ALL you just laid out, rather poured out, you still make space to offer assistance to others (i.e. moi). You are a loyal, giving and loving friend; fried though you may be, you’ve continued to be there for me. For this I am ever grateful. ♥️
Always. It's easier sometimes to focus on someone else than on what's on hand. And I'm lucky enough to have people in my life (like you) who understand my situation. We've spent more time knowing each other, than not. I'm still learning how to be a good friend.❤️
Boy, do I hear this. I do. So important that you've said this. People have a really hard time with illness, and impending death of loved ones. I remember how bad it was for the men I was friends with and took care of in the 80s and early 90s when AIDS/HIV held us in its thrall. People wanted to know, but they didn't want to KNOW. Family members thanked me, because they didn't want to DEAL, or help, or show up, or see the reality of the dying and the process to get there, in all of its messiness. When my dad was sick and dying, there were close relatives who wouldn't call, reach out, offer to take a shift, or even reach out to say they were sorry for my loss after he died (family members, mostly). Oh, wait, there was one visit kind of near the end when my dad's younger sister flew in and emoted crazily all over us about how she was suffering because he was sick, while he was lying there in the hospital hooked onto machines. I had some resentments, but mostly I kept my eye on my dad, grateful for the little support I did have, and did what I had to and wanted to do for him. So many folks are so terrified by disease and death. I get that. It's scary, and sometimes ugly. By avoiding it, they're also missing out on seeing the beauty of the ones we love. This is life. This is death. This is REAL.
"about how she was suffering because he was sick." That one makes my blood boil. I hear that from some of her old friends. I'm just want to scream and shake them. I don't. But I'd like to.
She threw herself on top of him, crying and wailing. He was weak and confused. I flipped out on her. I grabbed her and pushed her out of his hospital room into the hallway, and yelled and told her she wasn't welcome if she couldn't act like an adult, and I understood that she was experiencing her own sense of loss, but that she couldn't do it all over him, or me, for that matter. It was all about her, she couldn't see past her own shit to show up for him appropriately. She's gone now, too.
This is the most powerful piece I’ve read in a long time, Jodi. It reminds me to be proactive, too. I’m giving you a hug virtually. I’d ask permission though I don’t want you to need to think, to decide. Please, just accept.
I don’t think of myself as a natural caregiver, except for non- humans. I’ve needed relief from the constant decision-making, that I really understand. You are such an inspiration, on so many fronts.
This made me cry. More accurately, I sit at the orthodontist’s office waiting for my daughter in the waiting room crying because I understand this. I’ve been there with both of my parents and it’s so hard and it hurts like hell and it’s exhausting in a way that’s hard to understand and it’s lonely, too. I felt this in my bones. And I’m glad you got lasagna and soup and I think you just spoke for anyone/everyone who is caregiving or grieving or just barely hanging on one way or another. Sending you and your mom a lot of love.
Thanks, darlin'. Both parents, jeez. I'm so sorry. I was spared this with my father, which was ironic. He wanted to live forever, no matter what, and died in 2000 at 75 with prostate cancer, emphysema, spinal stenoses, having had multiple bypass surgeries. Still smoking. Still eating whatever he wanted. Mom, on the other hand, has been hoarding pills and planning her final exit since I was a kid, but the dementia took that option away from her. Thanks for the love. I can feel it. Thank goodness for community, wherever and however we find it.💙
Follow up to this post: When I wrote this it was intended for no one in particular. I appreciate all the comments and the support. So many of us have been there. The good news is, sometimes, when we speak up, which as you know, is not as easy as it sounds, we get what we need. In other words: You don't always get what you want, but sometimes, you get what you need. I wound up with a huge, deep delicious tray of lasagna (of which I froze most and will be enjoying it for a month!), a gallon of matzoh ball soup with a challah, and the offer of a massage.
Thanks. You are the sweetest. You know who you are.
This is so powerful and true.
Thanks Darlin!
Wow. This is so right on, and so so well written. I'm a AD caregiver, too (my wife) and - well - this hits home. Thank you.
People mean well, they really do. Mostly they either don't know what to say or they're freaked out by any idea of illness, any kind, really. I hope you're able to find some time for yourself and ask for what you need. I got a lovely surprise of a tray of lasagna from one reader and a gallon of chicken matzo ball soup from another! I didn't mean this as an ask, but it sure was appreciated. Any time you want to chat or vent, please, reach out. Love to you and your wife.♥️
Many compassionate hugs.
I remember the endless days of taking care of both my parents, and yes, K agree, there are too many decisions.
It’s wonderful to hear that you are away from the house for those hours. I’m not sure where you live, but in most states there is a program called seniors helping seniors,
. When dad was at his worst, we hired a person from there, to come keep an eye on him, take him to get a haircut, cook a meal. It was only $17 per hour. It was a great program.
I also used to steal the hour when their physical therapist came calling.. I’d go for a walk, or take a swim. Those hours were precious.
There’s not much I can do from here, but I would if I could.
Another thing that we did for dad was to assign one of his friends to each day of the week, and n that day, they would take care of any dad things that came up. It helped.
Both parents? Oy. I’m lucky in that I do have help during the day. I would have crashed and burned ages ago without it. I hear from folks who are the sole caregiver 24/7 and I can’t even imagine how one remains sane. ❤️
Thanks for sharing this. A lot of the time, the impression we get from your stories is that life with mom is bittersweet and rewarding, and the reality is brutally spelled out for us here. I'm sending massive napping vibes to both of you.
Oh, it is bittersweet and rewarding. It's also exhausting and overwhelming. I imagine anyone who has ever been a parent (which I haven't) has had a point where they just want to walk away from it all, or wonder what if they'd made a different decision. But she was a caretaker (to the point of being a bit of a martyr) and I get it from her. It's a good quality, I think. And I'm sure I get more than I give, though there are times, in the middle of it, that's hard to remember. I'll take all the napping vibes (Kevin Eileen napped with me today! He's been here a year and finally starting to act like a cat!). To you too, naps and energy and downtime. Sending love. Still available to sit in NY and keep you company🩷❤️
I truly appreciate your offer. For now, when I'm there, I'm in Brooklyn and in full-on caretaker mode--cooking, cleaning, shopping, etc. Transplant phase is still ahead of us and then there might be some crappy down time when I'd be glad to have company. I'll keep you posted. <3
Damn, you lay it out like it is and I sooooo appreciate your words. Even the idea of a gift card being too much. Sending over a meal in a container that doesn't have to be returned is the best option.
Sharing your journey is teaching us how to talk about death, care for a loved one, and how to navigate within it.
Taking 5 hours a week to not make decisions and move is priceless.
It's salsa and yoga for me.
Holding space for you in my heart and sending gratitude for your words and how you care for your mom.
Oh, those five hours are essential, and such a surprise when I realized what it was about them. The extra benefits of energy, getting in shape and community are great, but the not having to be in charge of anything is the best. Thanks for reading, and saying hi here.
So glad it rejuvenates!
Thank you for your honesty, authenticity, Truths and facts-o-life…what’s amazing to me, that with ALL that is on your plate, and with ALL you just laid out, rather poured out, you still make space to offer assistance to others (i.e. moi). You are a loyal, giving and loving friend; fried though you may be, you’ve continued to be there for me. For this I am ever grateful. ♥️
Always. It's easier sometimes to focus on someone else than on what's on hand. And I'm lucky enough to have people in my life (like you) who understand my situation. We've spent more time knowing each other, than not. I'm still learning how to be a good friend.❤️
Boy, do I hear this. I do. So important that you've said this. People have a really hard time with illness, and impending death of loved ones. I remember how bad it was for the men I was friends with and took care of in the 80s and early 90s when AIDS/HIV held us in its thrall. People wanted to know, but they didn't want to KNOW. Family members thanked me, because they didn't want to DEAL, or help, or show up, or see the reality of the dying and the process to get there, in all of its messiness. When my dad was sick and dying, there were close relatives who wouldn't call, reach out, offer to take a shift, or even reach out to say they were sorry for my loss after he died (family members, mostly). Oh, wait, there was one visit kind of near the end when my dad's younger sister flew in and emoted crazily all over us about how she was suffering because he was sick, while he was lying there in the hospital hooked onto machines. I had some resentments, but mostly I kept my eye on my dad, grateful for the little support I did have, and did what I had to and wanted to do for him. So many folks are so terrified by disease and death. I get that. It's scary, and sometimes ugly. By avoiding it, they're also missing out on seeing the beauty of the ones we love. This is life. This is death. This is REAL.
"about how she was suffering because he was sick." That one makes my blood boil. I hear that from some of her old friends. I'm just want to scream and shake them. I don't. But I'd like to.
She threw herself on top of him, crying and wailing. He was weak and confused. I flipped out on her. I grabbed her and pushed her out of his hospital room into the hallway, and yelled and told her she wasn't welcome if she couldn't act like an adult, and I understood that she was experiencing her own sense of loss, but that she couldn't do it all over him, or me, for that matter. It was all about her, she couldn't see past her own shit to show up for him appropriately. She's gone now, too.
This is powerful and raw, as always. Sending long-distance hugs. I'll email you an idea I have for getting some relief from all the deciding. XOXO
Caregivers get what I'm talking about. xoxo backatcha.
This is the most powerful piece I’ve read in a long time, Jodi. It reminds me to be proactive, too. I’m giving you a hug virtually. I’d ask permission though I don’t want you to need to think, to decide. Please, just accept.
Hug accepted. Some folks, who are natural caregivers, understand. And that's how we met, through caring for other sentient beings.❤️🐕
I don’t think of myself as a natural caregiver, except for non- humans. I’ve needed relief from the constant decision-making, that I really understand. You are such an inspiration, on so many fronts.