41 Comments

BIG hugs, Jodi. This is the very human reality of being a caregiver, and I have huge respect for how you've shared it here.

I understand. There were things I did to keep going when we cared for Dad, but TBH, I've no idea how much longer I could've kept going if he hadn't passed when he did because Mum had just been diagnosed with two different cancers and was about to have a first surgery. We were each beyond our limits of endurance with at least one ambulance call a week in the middle of the night, fraught with arguments negotiating with Dad to let us call the emergency services...and me having to shout at him. For nearly a year, it was one very long day. So, yep, I understand.

Unfortunately, long-term caregivers have lovely PTSD to reverberate within us long after our loved one passes - I know because the nightmare-sleep-walking days of caring for Dad still flash through my brain when there's a bang or Mum calls for me.

THIS is why I have such respect for what you've shared AND why we need to enable, give tools and prime others ;-)

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"For nearly a year, it was one very long day." Oh, yeah baby. I have no sense of time at all anymore. I keep really detailed notes and records because if someone asks "When was the last time...." anything, I have no idea. It's all jumbled in lack of sleep, naps, day is night, night is day.❤️

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I can relate. There were times when I was sure I would hurt my father. It was a stunning moment the first time it happened. I was sure it wouldn’t happen again. But it did and the best I could do was try. Thank you for sharing all that you do. Sending lots of love.

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Thanks Rochelle. It’s really shocking when we discover things about ourselves we wish weren’t true. Those things is one of the places compassion comes from. ❤️ being a human being is hard. I’d much rather be a well loved pet

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I'm so glad you've written this, Jodi. I think you know I've cared for my mother for years, in a house we bought, split into two separate units and shared. I've been caring for her for years, since she's been diagnosed with Parkinson's, and before that too. The difference between caring for children and parents is vast: though I also don't have children--I know that for most, children get through it, grow up and get better--parents do not. It only gets harder and harder and worse and then they die, and from most of what I've read, caregivers take years off their own lives doing it. I have felt like a shell, like an automaton, like a servant, like a person I no longer recognized because I had to give up, piece by piece, everything in my life to do it. She is now, thankfully, in a nursing home, where I also spend a great deal of time, but I can leave and the parts of me that disappeared are coming back and are somewhat recognizable (oh yeah, I remember that...). I found great solace in the Facebook group "Caring for Elderly Parents" and in your posts--voices of others in the trenches, and they are trenches. So many days, months, years, I couldn't even speak about it, because I knew it all so viscerally, there was nothing left to say and I didn't have the energy to even to say, because there was nothing to be done about it anyway. Women, pretty much only women, and usually one person in a family of siblings, take the fall and get the brunt of all of it unless you're in one of those rare functional families I hear about. Siblings pop in and 'do what they can' leaving the rest to do everything else. Primary caregivers give up work, lose opportunities, go into debt, have medical issues they can't even begin to think about attending to, you name it, all the while listening to people with choices tell them they need to take time for themselves when their time is spent deciding whether to eat or fall into bed, or think about what piece of life or need they can bear putting off next. It's a pretty damn silent assault on women in this country with little to no safety nets for caregivers or those they're caring for. For anything you or anyone says to bring attention to this hellish epidemic, I say bravo. And I wish we all lived in a country that cared.

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I’m part of (or was?) that Facebook group and a few others that are specific to dementia. They’ve been a big help. I kind of wanna leave Facebook, but I’ve gotten a lot out of it. I identify completely with feeling like a shell, like you stepped out of the life you used to have and it gives me hope that you’re finding yourself again. I don’t remember this from my parents generation, them taking care of my grandparents the way we take care of them. Maybe it’s because everybody’s living longer. When I hear from other —mostly women —who are dealing with hard caregiving, or have in my heart, it feels like a giant circle, and we’re all holding hands. I get strength from that. I’m sorry for anybody’s in the circle but I’m also grateful for them, you know what I mean.🙏🏻

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I totally get it. Thanks for speaking so frankly and bravely.

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The only way worth talking, eh? 😉

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I definitely remember moments when my kids were little when I understood completely how a parent could just lose their shit and get physical. I was keenly aware of the self control I was maintaining, especially as a single mom of three. I also remember, as a parent, fearing that I would never get a real night's sleep again, and how panicky I felt; how it impaired my judgment, pulled my patience taut as a bow string. I can easily imagine how the same fears and frustrations apply for elder care, and my mom is not cute or cuddly like a little kid. She is defensive and judgmental and exhausting, and her dementia is still pretty early stage.

Thank you for having the honesty to explore these difficult feelings and let people know how hard it really is, what you're doing. <3

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You have so much on your plate and it’s hit to be a million times harder to care for someone you have a complicated relationship with. Could I have done this for my father? I don’t know. I hope you never have to make the choice but there are wonderful facilities and sometimes that’s the best choice. Love. Love. Love. Love to Saf.

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I haven't had to deal with an elderly parent (yet?), but I know the havoc that sleep deprivation brings in its wake. This is honest and raw and truly a gift to anyone who is navigating caring for an elderly parent (or an infant)--because you are definitely not alone.

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Thanks Dina. I hope life never deals you (or them) this hand, and big ups for raising your kids. Parenting is a huge responsibility I was never up for. Utmost respect. ✊🏻

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Ooh I feel this and I’m no where close to this level of care. My anger and rage are real…can’t paper over that. Had a moment where i actually had gratitude to feel the bottom of psychological feminine violence…feels specific, terrifying and worth bringing out of the shadow.

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It’s been my experience that bottoms frequently have trap doors. Thanks for reading, and checking in. I know you know all the things, I’m not acting out on my anger (you know except eating my feelings) but I hate that I have them at all. I want to be a big blue Buddha, levitating and healing the world! Ha! ❤️ reaching out directly any time, Cat.

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I worked in assisted living/memory care fir 25 years. So many hurting families. Ar least I could go home at the end of the day. But there were sweet moments, tense moments, happy moments. I hope my residents felt my love.

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I feel comfortable saying I'm sure they did. The staff and nurses make such a huge difference for the clients and for the family. Mom had such a good crew in her assisted living, from the people who cleaned the room to the handyman, just lovely, lovely people that made me feel comfortable having her there. I know Mom feels the love, even when she doesn't know it's me, so yours for sure got through to the families and your patients. Sometimes we can't even name it, there's just a safe aura, an atmosphere.❤️ Thank you for the work you did. Invisible heroes...

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WHOA! No doubt that was harder to write than it was to read-and it was a hard read. Your writing helps me put into perspective my mother/daughter relationship. I am also a childless only child though my relationship with my Mom was very different. Thank you for being brave and bare. Another virtual hug, dear Jodi.

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Thanks, Juel. I think talking about the things no one wants to talk about is important, otherwise we're stuck in our own heads thinking we're the only ones who....fill in the blank. And one thing I learned in recovery is, if there's a name for it, someone has done it before you. Relationships are hard, even when they're good. Hugs back to you.

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Wow Jodi. So relatable

I relate and definitely been worried when I’m in zombie land that I might hurt someone

Thank you for your hard-core honesty and I wish you some very deep rest away from mom

🌹💙🌹💙

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Oh P, I know you know.❤️ love is complicated. life is complicated.

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Yes, yes yes. We used to have an expression around my house in the early years and I would yell out “nobody move.” that meant clear the way somebody’s gonna get hurt. I haven’t had to do that in a really long time thank God. Bless your beautiful heart.

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I like that! It's perfect, stopping time.

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I am so sorry you are here in the process. Caregiving is so. damn. hard. I am sending love and light, all the while knowing that is not nearly enough.

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Love and light are good, I'll take that. I know you know. I feel like the caregiving would not be nearly has hard if I still had my mother to talk to about it, which of course, that part of her is gone. I still will lay my head on her shoulder or lay next to her and her hand on my arm, even though she doesn't see me or know I'm there, is still very comforting.

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Aw hon, here if you need to DM-talk about it. I hear you. HUGS

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I agree. One of the most jarring things about dementia is that they LOOK like someone you know, but they are incapable of BEING the person you knew. And doing everything all the time, without being able to rely on someone who you once knew was a capable adult, is fucking exhausting! I’m glad you still find comfort in being with her. That is a gift.

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SO well said, hon! When Mum and I were caring for Dad we'd spend an hour at the end of the day, aligning on anything that'd happened and anything we needed to do. Talking together brought us even closer together AND remind ourselves that Dad with vascular dementia wasn't able to 'reason'.

Mum had to get used to not 'talking things out' with Dad, but I became that person for her. Having a 'someone' to narrate and talk it out with I'm realising is VERY important. I now divide up the 'talk' with a few friends. xo

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Oh. Wow. How hard, hard, hard, impossibly hard. So glad you're writing it out. Sending a huge hug, Jodi. XOX

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I'm accepting all virtual hugs, btw. I think it's so hard because it's been dragging on for so, so long. As if I've been holding my breath for years.

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I so appreciate your honesty - not just in this account but with yourself. It is one of the hardest things ever to resent your mom as she's fading away. To miss her while she's still there. I hope the writing helps you cope. Know that it helps others. Thank you for sharing.

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It really is so confusing. She would be the person I would go to with the feelings that are coming up. And the "she" I need is gone. I do still talk to her though, as if she were still there.

I remember once the pain of a romantic relationship ending. He was my closest friend at the time, the person I would have taken my hurt feelings to, but I could no longer to that. This feels like that. As if someone has taken away my safe port.

Thank you for reading, and for reaching out.

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You are the most honest person, Jodi. I could never do what you're doing, every single day, because I can't imagine you're not doing it, even in your own head, when you get the grace a couple of days off to restore yourself. Sending love and a huge hug. I know, I know. The hug thing. It's virtual, if that helps! xoxo

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I'm lucky that I've had a close relationship to Mom, even during my dark years. We've always been enmeshed, like fine gold chains that get so tangled up it takes hours to tease them apart. I'll take that virtual hug. I'll take a real live one in April, too.🩵

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Yay to real live hugs!!!!

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This is so poignant and real, and critical to share, thank you. When my dad was dying from vascular dementia my mind kept looping around to the thought 'no one talks about this.' They don't talk about the physical exhaustion of caregivers, of the screaming and yelling, of the aggressiveness of the person with dementia that prompts aggressive feelings in return. To be clear I wasn't my dad's primary caregiver (my mother was).

My mother should never have had children and watching her take care of my father was traumatic for all of us. I do understand why she was so angry, though, don't get me wrong. She wanted him in a home, and when that happened was horrified at the care he received. Again, she had legitimate reasons for her feelings, it's just in the end the patient suffers regardless and it's a horror movie. There is no good or perfect way around it (though I wish I'd been able to help with my dad's care - a story I need to write about, one day).

Thank you for your bravery - it helps me more than I can say.

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Thank you, it means a lot to me to hear you say that. One of my readers was worried about somethings I'd written, worried someone would take it the wrong way, as if I was being abusive. She suggested I change some things in the essay.

I'm not abusive. I'm being human. And I'm not changing anything specifically because no one talks about this stuff. And when we don't see ourselves reflected in the world, we think we're an anomaly, the only freak that does this, or feels that.

Talking about the hard stuff is important. It's also freeing.

Thanks for reading, and for checking in. You'll write whatever it is you need to write when you're ready. When you've got the distance you need. Or you won't. Either way, the experience changes you, and only for the better I think.

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Awwww, Geez - 'that reader' just proved why we need honest, vulnerable writers telling the truth without sugarcoating it to be acceptable to the mainstream illusion. Because anyone who hasn't seen/cared for someone they love is unlikely to understand the reality you've shared.

I'm 100% with you hon! The trouble is we're invisible to the world so there is no place to really be seen/heard and people don't like the ideas of Suffering and Mortality being part of being Human.

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She was concerned for my well being, which I appreciated. She worried someone would misinterpret or see abuse where was none. ❤️

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Ah ok

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You are a super human, and never forget that, Jodi! I can't even imagine doing for my mom what you are doing for yours. Reading this does bring back memories of raising my boys. I remember once, when they were probably 2 and 4 years old, when it all felt like too much. I put them each in a safe corner and told them to stay there while Mommy took a time-out. I ran upstairs, closed my door, and started screaming and punching my pillow. It helped!! I came back downstairs, much calmer and explained to the boys . . . I have never been one to totally lose control, no matter what. I always have a voice inside of me stopping me, so hurting them was beyond my comprehension. But at times I did feel that way with my mom!! So I do get it in a way. One more thought - you don't want to give her too many meds and just quiet her for your own benefit. What makes you think that wouldn't be good for her too? Could her agitation and constant confusing actions be overwhelming and confusing for her? Maybe more meds is not a bad idea for her quality of life?? Just a thought from someone who has not been there . . .

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Thanks for checking in Kim. I remember my own mother giving herself a time-out, running upstairs and literally locking herself in her bedroom to keep from throttling me, but I was already a teen then and probably could have used a good throttling.

Caring for another living being is a lot. A lot of pressure, expectation, time, a lot of figuring things out on the fly. I have nothing but respect for parents, and especially single parents. Such a big responsibility, getting someone ready for a life.

I do know that sometimes the meds help her as well, and I don't hesitate to use them then, which is how it all started, when she would get stuck in a cycle of agitation and fear. Or when her body is so tired, but her mind keeps firing and it's just torture for her. But not unlike when you have an old cat or dog, and it's on you to decide when it's time, I find it so hard. I want to be clear that I'm choosing what's right for the animal, not just convenient for me. Sometimes they overlap.

Thank you for all your support. 🩵

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