It's never a sign of weakness or something selfish when a caregiver reaches the point where they consider seeking help caring for someone they love. I understand wholeheartedly that the previous sentence is irritating in itself and sounds altogether too simplistic. Still, I have to add that no one struggles more at that juncture than those involved with caring for a loved one with a form of dementia and having to watch its ruthless decline. Through your articles, I've grown to adore your mom, and I wish I'd known the two of you over the years... but at the same time, I know exactly where you are now. You have done a brilliant job being there for her, celebrating her life, and giving your heart and soul to keep her safe, engaged, and deeply loved. That you're seeking information about a memory care community may feel traitorous, but it's actually just an extension of how much you're consumed by the idea of seeking the best situation possible for her. And if you find information that feels right to you for her ongoing care, you'll know if it's a perfect fit (or not). All you've done is research, and that's what writers (and daughters) do. You're in my thoughts all day today, tomorrow, and however long it takes for you to find some small measure of peace.
Great piece, honest Jodi. Will be interested to hear your take on the visit tomorrow. I hear you about wanting to leave. I'm tossing and turning over it. Every day. xo
No, I created the trust in case she outlives me. She had no dad, which is why she stayed with mine. She didn’t want me to grow up without a dad. Thanks for reading. Wishing everyone in your home and life some sanity in the dumpster fire we currently are in this country.
What a time...yes, of course, it makes sense that you want to run away from it all. Your options are so creative, too! You'll know a lot more once you tour this place and ask all your questions. I know you know that they know what you're going through and have been through it many times. Hope the visit offers you some clarity. It's always one step at a time. Try not to think beyond that for now. And please let us know. No easy answers, no easy answers, no easy answers. Big hugs your way.
I still have the spreadsheet I created when I did the search for the assisted living. That choice was easier and she was able to participate in the choosing. The hardest part is that any decision is all mine. I never signed on for that much responsibility, but there you go.
I understand about the not-signing-on part. You've given your all. ALL. And more. Maybe your instincts are telling you it's time to share the caretaking. It's not like you'd disappear. It's OK to want to have your life as Jodi the Woman. But, again, not easy, not easy, not easy.
It's so hard to figure anything out right now, that's really what I think. It's exponentially harder when you have an aging parent in the mix and you're responsible for them. I have one left, my stepdad. We are not at the end-times yet, but I went through what you're describing (my own versions of course) with my mom and then my dad, and it's brutal and exhausting. The world makes no sense right now, so how do you plan for anything? If we knew for sure we'd lose free speech and liberal-minded people would end up behind bars, and women and girls would lose their rights and become baby-making machines, and our neighbors would continue to be disappeared off the streets and well, you get the picture - if we knew the worst-case scenarios in all directions were going to come to fruition and no matter how hard we tried to fight it we were going to lose, we'd gtfo if we could, and take our friends with us.
Short of knowing that, no one wants to give up, to leave, to stop fighting like hell. I'm in a conversation about colleges with my 16-year-old. She wants to be a journalist. I don't know if I should be taking her on college tours this spring here in the states, or thinking about universities in Europe. But I'd never leave my son here, and he has 3 years left before he graduates from college himself. It's all nuts. But you're a great daughter, Jodi. Incredible. As a mother, I would not want my daughter to wear herself out for me, and I mean that. I would not want that for her, or for my son. That would break my heart. Do what you need to do and what is best for you at this point. That's the best thing you can do for her, too, truly. Sending you so much love.
I'm not waiting for "know for sure" because that feels too late. If Mom weren't here, I'd be gone already. I'd planned on driving around the country, Canada and Mexico in a converted van after I stopped working, but I just don't want to be here anymore. Not even off the grid. Witnessing what's happening is breaking me. I can't believe it hasn't even been a year...Thanks for checking in, Ally. ❣️
It’s all insane. And you didn’t ask for advice so I hope it didn’t come off like that. I just think about these things sometimes, after losing my own parents and the toll it took. And of course there’s all this love and grief and no two situations are the same. But my worst nightmare is being a burden to my kids or being the reason they’d stay in a situation that was painful, emotionally or otherwise. Sending you big hugs. The van sounds good ❤️
Humour in the midst of heartbreak. That's what makes your piece so real. My mother is the cat. I had to laugh. But, I also know I'm fortunate that both my parents were kind enough to die before any of this misery overtook them (and me). I lucked out. How gauche to say that, but there it is. That's the truth. How it will be for me when I'm la-la, I have no idea. Maybe I've got some secret deal with the Grim Reaper to come and get me early. I hope so.
I get it. I really do. I used to hope that she and my dad would die at the same time so I wouldn't have to be alone with him. Then when she met her boyfriend, I wanted them to die together as well. Just...easier. For me. Not terrible to say that at all. I cherish a lot of the time I get with her, but a lot is just draining. I'm thinking of pulling a Thelma and Louise when my time is near.
Aw, thanks. There should be a little heart on the top or bottom of the essay, depending on whether you're reading on your phone or desktop. Thanks for asking!
Good to know, I'll be sure the amend my "please heart this" going forward. Thanks so much for taking the extra steps. I'm looking forward to looking over writeradvice.com!
Hi Jodi - first of all 2A, right down the street from me? Talk about parallel lives... and wow there's a lot in this one and I feel you. The combination of the ever-surreal nightmare outside world plus all that is involved in the incredibly loving care of your mom, so far beyond overwhelming. You write about it all so beautifully and with such detail that I feel I am right there. Sending a big hug your way!!
So many angles and thoughts and aspects to consider. So many choices even if some may not really be choices. And dancing on the fire escape. 2A is where I was on my birthday, a small bit of socializing I wasn’t quite ready for but I love that I see your world so clearly
Big hugs. I'm going to be moving my husband into a memory care facility within the next month after 6 years of balancing full-time employment with dementia care. I know I'm going to cry about this. A lot. I haven't lived alone for 38 years. But, as you say here, if it's the best thing for them, that's really what matters. Everything else, you work it out. ❤️
Oh, Pam. That sounds so hard. Why did no one tell us about this when we were growing up? I feel like we're the first generation to really be smacked in the face with it. I don't remember my grandparents needing that kind of support. Please take advantage of support groups. I was part of a caregivers in person support group for five years and it made a huge, huge difference. Sending love.
I'd love to make those s'mores with you! Your post is one of those that stands out among the gazillion that I read on Substack. Your mom raised an intelligent, witty, very human daughter! Everything you are feeling is so f''in normal for a lot of folks. Your essay will remain in my thoughts for a long time. In fact, I'm going to share it with a friend who has a dad with dementia and a mother who is falling apart watching her husband slip away.
Gorgeous words about an ugly time. Do. Not. Feel. Guilty. All the games you play and love you give her could be done during regular visits. You have gone above and beyond. I know from your stories that your mom was a kind and loving mom. (Also imperfect as all moms and humans are.) As a mom myself I can tell you that no loving, giving mom in the world would want their kid to give up their own life so completely, to become frayed, to reach exhaustion on their behalf. I promise you it's ok (not easy - never easy) to step back and move her somewhere safe. You've been more than a loving and generous daughter. I don't know her, but I do know she would understand. Also, the NYFD could help you move her. And if not, I could get my 6 '3 son and his 6 '7 former NFL player boyfriend to help you. For real. Just say the word.
Thanks for the mom POV. And boy oh boy would she love the idea of two young men carrying her! The NYFD will not help, neither will the paramedics. It's come up before when the elevator was out and we were stuck downstairs. I'd always heard they would. Nope. Not here. I'll let you know how this pans out...
i feel you ❤️🩹
Thank you, Kathleen
It's never a sign of weakness or something selfish when a caregiver reaches the point where they consider seeking help caring for someone they love. I understand wholeheartedly that the previous sentence is irritating in itself and sounds altogether too simplistic. Still, I have to add that no one struggles more at that juncture than those involved with caring for a loved one with a form of dementia and having to watch its ruthless decline. Through your articles, I've grown to adore your mom, and I wish I'd known the two of you over the years... but at the same time, I know exactly where you are now. You have done a brilliant job being there for her, celebrating her life, and giving your heart and soul to keep her safe, engaged, and deeply loved. That you're seeking information about a memory care community may feel traitorous, but it's actually just an extension of how much you're consumed by the idea of seeking the best situation possible for her. And if you find information that feels right to you for her ongoing care, you'll know if it's a perfect fit (or not). All you've done is research, and that's what writers (and daughters) do. You're in my thoughts all day today, tomorrow, and however long it takes for you to find some small measure of peace.
Great piece, honest Jodi. Will be interested to hear your take on the visit tomorrow. I hear you about wanting to leave. I'm tossing and turning over it. Every day. xo
I know. I get it. I’ll let you know, off-line.
Please get your book published. Your stories are amazing. You are a fabulous writer. And, I will dance with you, anytime.
Thanks doll. I don't think I'm a book writer. For years I thought I was. I might be an essay collectionist however. How goes the world tour!?
Amazing on all levels. Your mom’s dad and creating a trust in case she outlives you…
Toasting marshmallows
Where do you come up with all of this?
There are so much in here, so much feeling, so much love and so much reality
Thank you dear
Enjoy those marshmallows
I get it. Sorry I mixed up the dad‘s. So much love in both of you.
No, I created the trust in case she outlives me. She had no dad, which is why she stayed with mine. She didn’t want me to grow up without a dad. Thanks for reading. Wishing everyone in your home and life some sanity in the dumpster fire we currently are in this country.
What a time...yes, of course, it makes sense that you want to run away from it all. Your options are so creative, too! You'll know a lot more once you tour this place and ask all your questions. I know you know that they know what you're going through and have been through it many times. Hope the visit offers you some clarity. It's always one step at a time. Try not to think beyond that for now. And please let us know. No easy answers, no easy answers, no easy answers. Big hugs your way.
I still have the spreadsheet I created when I did the search for the assisted living. That choice was easier and she was able to participate in the choosing. The hardest part is that any decision is all mine. I never signed on for that much responsibility, but there you go.
I understand about the not-signing-on part. You've given your all. ALL. And more. Maybe your instincts are telling you it's time to share the caretaking. It's not like you'd disappear. It's OK to want to have your life as Jodi the Woman. But, again, not easy, not easy, not easy.
It's so hard to figure anything out right now, that's really what I think. It's exponentially harder when you have an aging parent in the mix and you're responsible for them. I have one left, my stepdad. We are not at the end-times yet, but I went through what you're describing (my own versions of course) with my mom and then my dad, and it's brutal and exhausting. The world makes no sense right now, so how do you plan for anything? If we knew for sure we'd lose free speech and liberal-minded people would end up behind bars, and women and girls would lose their rights and become baby-making machines, and our neighbors would continue to be disappeared off the streets and well, you get the picture - if we knew the worst-case scenarios in all directions were going to come to fruition and no matter how hard we tried to fight it we were going to lose, we'd gtfo if we could, and take our friends with us.
Short of knowing that, no one wants to give up, to leave, to stop fighting like hell. I'm in a conversation about colleges with my 16-year-old. She wants to be a journalist. I don't know if I should be taking her on college tours this spring here in the states, or thinking about universities in Europe. But I'd never leave my son here, and he has 3 years left before he graduates from college himself. It's all nuts. But you're a great daughter, Jodi. Incredible. As a mother, I would not want my daughter to wear herself out for me, and I mean that. I would not want that for her, or for my son. That would break my heart. Do what you need to do and what is best for you at this point. That's the best thing you can do for her, too, truly. Sending you so much love.
I'm not waiting for "know for sure" because that feels too late. If Mom weren't here, I'd be gone already. I'd planned on driving around the country, Canada and Mexico in a converted van after I stopped working, but I just don't want to be here anymore. Not even off the grid. Witnessing what's happening is breaking me. I can't believe it hasn't even been a year...Thanks for checking in, Ally. ❣️
It’s all insane. And you didn’t ask for advice so I hope it didn’t come off like that. I just think about these things sometimes, after losing my own parents and the toll it took. And of course there’s all this love and grief and no two situations are the same. But my worst nightmare is being a burden to my kids or being the reason they’d stay in a situation that was painful, emotionally or otherwise. Sending you big hugs. The van sounds good ❤️
Absolutely no offense taken. We cool. 😉
Humour in the midst of heartbreak. That's what makes your piece so real. My mother is the cat. I had to laugh. But, I also know I'm fortunate that both my parents were kind enough to die before any of this misery overtook them (and me). I lucked out. How gauche to say that, but there it is. That's the truth. How it will be for me when I'm la-la, I have no idea. Maybe I've got some secret deal with the Grim Reaper to come and get me early. I hope so.
I get it. I really do. I used to hope that she and my dad would die at the same time so I wouldn't have to be alone with him. Then when she met her boyfriend, I wanted them to die together as well. Just...easier. For me. Not terrible to say that at all. I cherish a lot of the time I get with her, but a lot is just draining. I'm thinking of pulling a Thelma and Louise when my time is near.
If only we knew when our time was near!
Where/ how would I ❤️ this?
Aw, thanks. There should be a little heart on the top or bottom of the essay, depending on whether you're reading on your phone or desktop. Thanks for asking!
Thanks. I finally found it. I was looking for a red heart--not a b&w one.
www.writeradvice.com
Good to know, I'll be sure the amend my "please heart this" going forward. Thanks so much for taking the extra steps. I'm looking forward to looking over writeradvice.com!
Thanks so much!
Hi Jodi - first of all 2A, right down the street from me? Talk about parallel lives... and wow there's a lot in this one and I feel you. The combination of the ever-surreal nightmare outside world plus all that is involved in the incredibly loving care of your mom, so far beyond overwhelming. You write about it all so beautifully and with such detail that I feel I am right there. Sending a big hug your way!!
So many angles and thoughts and aspects to consider. So many choices even if some may not really be choices. And dancing on the fire escape. 2A is where I was on my birthday, a small bit of socializing I wasn’t quite ready for but I love that I see your world so clearly
2A. I guess it's kind of immortal, I mean that night was probably somewhere around 40 years ago...I hope they've fixed the fire escape!
I believe they did. That's where Jesse Malin was living until he had the spinal stroke.
Big hugs. I'm going to be moving my husband into a memory care facility within the next month after 6 years of balancing full-time employment with dementia care. I know I'm going to cry about this. A lot. I haven't lived alone for 38 years. But, as you say here, if it's the best thing for them, that's really what matters. Everything else, you work it out. ❤️
Oh, Pam. That sounds so hard. Why did no one tell us about this when we were growing up? I feel like we're the first generation to really be smacked in the face with it. I don't remember my grandparents needing that kind of support. Please take advantage of support groups. I was part of a caregivers in person support group for five years and it made a huge, huge difference. Sending love.
I'd love to make those s'mores with you! Your post is one of those that stands out among the gazillion that I read on Substack. Your mom raised an intelligent, witty, very human daughter! Everything you are feeling is so f''in normal for a lot of folks. Your essay will remain in my thoughts for a long time. In fact, I'm going to share it with a friend who has a dad with dementia and a mother who is falling apart watching her husband slip away.
Thanks for your words and for sharing. I can't imagine doing this with a spouse or partner. Devastating.
I feel for you and your ma, Jodi. You didn't want to write about any of it but you did and I'm glad.
Oh, Jodi. Just sending hugs. So much ugliness right now, but not in your box on the 4th floor. X
Love and exhaustion up here. Love and exhaustion.
Gorgeous words about an ugly time. Do. Not. Feel. Guilty. All the games you play and love you give her could be done during regular visits. You have gone above and beyond. I know from your stories that your mom was a kind and loving mom. (Also imperfect as all moms and humans are.) As a mom myself I can tell you that no loving, giving mom in the world would want their kid to give up their own life so completely, to become frayed, to reach exhaustion on their behalf. I promise you it's ok (not easy - never easy) to step back and move her somewhere safe. You've been more than a loving and generous daughter. I don't know her, but I do know she would understand. Also, the NYFD could help you move her. And if not, I could get my 6 '3 son and his 6 '7 former NFL player boyfriend to help you. For real. Just say the word.
I’m serious about the offer. I know they would be more than willing to help and the two of them could easily carry her down themselves.
Thanks for the mom POV. And boy oh boy would she love the idea of two young men carrying her! The NYFD will not help, neither will the paramedics. It's come up before when the elevator was out and we were stuck downstairs. I'd always heard they would. Nope. Not here. I'll let you know how this pans out...