Cindy, it is very interesting that the loss of the caregivers life is not often discussed. I imagine that part has to be kept as quiet as possible so people take on the role of family Caregiver'. We talk constantly about what the patient loses, but there is an unspoken, secondary grief for the caregiver's own upended life, plans, and identity. It is a massive piece of invisible scaffolding holding things together, yet the cost to the person providing it is so often met with silence. Thank you for shining a light on the parts of this journey that aren't in any manual.
At the risk of sounding like a shameless plug, the impact of caregiving on the caregiver is why I wrote my book--because the experience I was having was not talked about very much in the caregiving spaces I was seeking out. The reviews reflect that perspective--there have been some that are kind of, "well, she's kind of selfish isn't she?" but the ones who get it, like it. Thanks for affirming that.
Great article! Appreciate you bringing up this idea that we shouldn't suffer in silence or feel shame or resentment when caregiving completely changes the life we thought we would have.
It's like a long swerve in your path. What you pick up along the way will hopefully lead you to where you always planned to be, but there are many bumps and turn backs and broken GPS directions.
Thanks, Janine. A long swerve indeed! I wanted to pick up where I left off--and it really felt like I left a lot behind sometimes--but some of those things stayed left behind. We can still move forward, it just looks different.
Hi Cindy, thank you for this post. The grief around the secondary losses are often not spoken about - particularly the absence of people who were once otherwise in one’s life. 🙏🏼💖
This was interesting and thought-provoking, Cindy. I never thought I might be grieving for the parts of my life I lost when my mother moved in and I became her caregiver for six years. I wrote about a lot of other things in my book, The Space Between: A Memoir of Mother-Daughter Love at the End of Life. I stopped believing in anticipatory grief because what I grieved was witnessing pieces of my mother dying away every day. Caregiving is harder than anyone realizes until they become one themselves. You’ve helped them by writing your book and your words today. Thank you, Cindy
Thank you, Ginni. I appreciate your comment. I don't think people really "get" caregiving unless they've actually been through it in some way. Even the "good" experiences require people to readjust their lives to a different schedule, one that may not have been in the plans. xo
I loved the book, Cindy. I had a very hard time helping my mother at the end. There is guilt associated with that, but I really was doing the best I could, as was she. I'm glad you said that.
I always say, "there's no guilt in caregiving" but of course there's tons of it. I just like to remind people that unless you were actually responsible for the dementia or the disease, then they probably shouldn't feel guilty for taking on such an enormous and emotional task.
Of course I wouldn't have had it any other way, but my Mama was tough some days. Others we laughed so much. Just how it is as you know. I miss her no matter.
Cindy, it is very interesting that the loss of the caregivers life is not often discussed. I imagine that part has to be kept as quiet as possible so people take on the role of family Caregiver'. We talk constantly about what the patient loses, but there is an unspoken, secondary grief for the caregiver's own upended life, plans, and identity. It is a massive piece of invisible scaffolding holding things together, yet the cost to the person providing it is so often met with silence. Thank you for shining a light on the parts of this journey that aren't in any manual.
At the risk of sounding like a shameless plug, the impact of caregiving on the caregiver is why I wrote my book--because the experience I was having was not talked about very much in the caregiving spaces I was seeking out. The reviews reflect that perspective--there have been some that are kind of, "well, she's kind of selfish isn't she?" but the ones who get it, like it. Thanks for affirming that.
Great article! Appreciate you bringing up this idea that we shouldn't suffer in silence or feel shame or resentment when caregiving completely changes the life we thought we would have.
It's like a long swerve in your path. What you pick up along the way will hopefully lead you to where you always planned to be, but there are many bumps and turn backs and broken GPS directions.
Thanks, Janine. A long swerve indeed! I wanted to pick up where I left off--and it really felt like I left a lot behind sometimes--but some of those things stayed left behind. We can still move forward, it just looks different.
Agreed. If can understand that it will look different perhaps that makes it easier to move forward.
Hi Cindy, thank you for this post. The grief around the secondary losses are often not spoken about - particularly the absence of people who were once otherwise in one’s life. 🙏🏼💖
Thank you for your kind words…and sharing your own experience. ♥️
💖🙏
You shed light on the aspects of caregiving that most don’t think about, Cindy. I’m sure there’s a lot there that wasn’t in the manual.
Thanks, Bill. There wasn't a manual that helped us in our situation, that's for sure. (So I wrote my own ;)
Such a complicated topic. And so beautifully described (as always) by you. ❤️😍🤗
You inspire me :) 😍
This was interesting and thought-provoking, Cindy. I never thought I might be grieving for the parts of my life I lost when my mother moved in and I became her caregiver for six years. I wrote about a lot of other things in my book, The Space Between: A Memoir of Mother-Daughter Love at the End of Life. I stopped believing in anticipatory grief because what I grieved was witnessing pieces of my mother dying away every day. Caregiving is harder than anyone realizes until they become one themselves. You’ve helped them by writing your book and your words today. Thank you, Cindy
Thank you, Ginni. I appreciate your comment. I don't think people really "get" caregiving unless they've actually been through it in some way. Even the "good" experiences require people to readjust their lives to a different schedule, one that may not have been in the plans. xo
I loved the book, Cindy. I had a very hard time helping my mother at the end. There is guilt associated with that, but I really was doing the best I could, as was she. I'm glad you said that.
Thanks for getting the book, Heidi. ♥️
I always say, "there's no guilt in caregiving" but of course there's tons of it. I just like to remind people that unless you were actually responsible for the dementia or the disease, then they probably shouldn't feel guilty for taking on such an enormous and emotional task.
Of course I wouldn't have had it any other way, but my Mama was tough some days. Others we laughed so much. Just how it is as you know. I miss her no matter.