Tell Us: Can You Get Your Life Back?
Jun 27 2011 in Denise's Blog, Tell Us by Denise
Last week, our local PBS station aired an interview with Jane Gross, author a of new book detailing her experience caring for her mom called A Bittersweet Season: Caring for Our Aging Parents – and Ourselves. Jane worked at The New York Times for 28 years and began its wonderful blog called The New Old Age.
The interviewer, Phil Ponce, asked Jane an interesting question during the interview. During caregiving, he asked, can you get your life back?
No, she answered. You don’t get your life back.
She added that she wished someone had told her that she wasn’t going to get her life back because knowing that would have meant she slowed down.
So, I’m curious: During caregiving, can you get your life back? What do you think? Please share your thoughts in our comments section. And, you can listen to the complete interview with Jane via the player below.
Bette said on June 27, 2011
Wow. This was a very thought provoking interview.
I understand the various emotions that Jane talked about – both with herself and her brother. I would be intrigued to hear her expand on the answer she gave to Mr. Ponce regarding her life.
I think this is another reason why it is so important to have support in a caregiving situation.
If you have the correct and most helpful support in place, you won’t feel the need to ponder the question: Will I get my life back? You have it. Caregiving is part of it. And, depending on the caregiving situation: it can strengthen it.
I think a question that has been on my mind is: When caregiving is over, will I have a place?
Caregivers lives revolve around caregiving and all it entails – planning, organizing, scheduling, etc. It’s such a valuable thing to be a part of – will I ever find something as valuable to take part in?
The Unit Known as Shandi said on June 27, 2011
Again, Bette, you are such an inspiration to me. I know that caregiving gives me an opportunity to grow into a better person. It also threatens to pull me apart. I often feel like I’m on a tightrope between the two!
I’ve been asking myself lately why I have a tougher time accepting my role as caregiver than I did being a mom to our four kids. I never felt this pull then. Being a mom was a huge part of who I was, and I took a lot of pride in it. I haven’t reached this point with caregiving, but I’m hoping to! And I know that you are doing both at the same time.
Bette said on June 27, 2011
Hi Shandi,
I’m loving this conversation – I think I’m breaking a sweat because of it: I’m making dinner, and in between “boils” reading each comment (:
I’m learning in my conversations with Denise that “resistance” is really my worst enemy.
In caregiving there is so much newness that it just doesn’t seem natural at times.
I am one that likes to have things pretty much in line…when something very much out of line comes – it’s tough to know what to expect, and how or if to handle.
I’m not ‘through’ with resistance by any means, but in acknowledging it is there, I think it’s a start.
jane gross said on June 27, 2011
to clarify, what i meant and would have said were TV not so unforgiving in its time limits, is that you don’t get the life back that you have before as long as the caregiving experience is going on. by making a to-do list, as my brother and i did, and efficiently ticking off the items, my mother did not (nor should we have expected her to) return to her previous health, well-being and independence. never again until her death were all of us not tethered in a way we had never been before. this isn’t totally bad……..hard at times when it is going on……….sad at times after it is over……..but not something you can “fix” once the trajectory is downhill with someone past the age of 85. i’d like to think, with the luxury of space and time, i describe the “never the same again” aspect in my book. i wouldn’t trade the experience for anything. i came to love my mother and vice versa. ditto my brother. but i’m about to go swimming without worrying that i won’t be able to hear my cell phone in the pool. soon to go on vacation at the same time as my brother, rather than negotiating our times away when she was still alive. i wish without sounding vain, or greedy, i could beg all of you to read the book. you may not “love” it but it is unlike any other on the topic…………..a braiding of memoir, advise and public policy. and my gift to my late mother, and my newly appreciated brother, for thrusting me into this world and then teaching me so much.
Bette said on June 27, 2011
Hi Jane,
I understand about the sometimes unforgiveness of TV. I actually had something similar happen with a newspaper.
I just ordered your book, and am so looking forward to reading it.
My husband, three young children and I care for my mother, and have for 9 years. She is in the severe stage of dementia. Very difficult, but as you said I wouldn’t trade being with her during this time.
I look forward to reading your book.
Denise said on June 27, 2011
Hi Jane-We’ll make your book our August pick for our book club. I also have a request: Will give the same time to what our bloggers have written here as we do to your book? The family caregivers who blog (and those who share their stories through their comments) have incredibly compelling stories. I think it’s great if your book is unlike any other on the topic. I hope you’ll note that our community here—where the stories of family caregivers are first and foremost—is unlike any other.
Beth said on July 1, 2011
Jane, I am reading your book. It was promoted by our local library as one of their daily picks. I am in a similar situation as you were and can relate to the numerous mistakes made along the way because it is hard to find someone who knows it all. It was hard to read at first because it brought back that horrific first year(2010) of trying to be a long-distance caregiver and, at least weekly drives to my Mother’s hometown, and the clear lack of direction we had about what to do next.
But I love the book now, and can’t wait to read it every day to see what is next. I highly reccomend it- I love the theory about “the line keeps moving” and also about how cargiving does change you in a lot of ways, many of them good. I do NOT want to get my old life back- I want to be who I am now. In the Book Another Country” by Mary Pipher, she notes that we grow up as we take care of our parents.
One difference I have is that I have 7 siblings and some are quite un-engaged in the process. One I never hear from at all. After 18 months- and still in the midst of caring for Mom, I have worked through most of my anger- but I would not say this experience has improved my relationship with many of my siblings- actually caused much harm.
But- I do recommend the book, one of the best I have read.
Beth
jane gross said on July 2, 2011
beth……………….what a wonderful comment to wake up to. i’m curious where you live and what local library is promoting the book. i’d like to thank them personally. also, re all those sibs, hard to image with so many someone would “go off the reservation.” in any family, i think the experience can bring people together or pull them apart. with only two of us, it had to be one of the other. multiple our little duo and all sorts of permutations possible. and even my brother and i were at each others throats maybe 1/4 of the time while my mom still alive, glad to be rid of each other for a while after, back together again and euphoric at our newfound relationship after that and now on again off again. but, for sure, diffferent than before in terms of trust that the other will be there, even if not always in the way we wished, but stead. my thoughts are with you.
Bette said on June 27, 2011
In thinking about the value of caregiving, I think about the meaning we receive from it. Caregiving is a very meaningful experience. That’s part of the value, that must be difficult for caregivers to find elsewhere. With just the right support we find the meaning of caregiving and of ourselves.
I wonder who was that support for Jane?
Jo said on June 27, 2011
This raises another question, would you WANT your old life back? For me the answer is largely no. The lessons I’ve learned are too valuable. I’m older, wiser, and stronger than before. I’m also more away of my limits, more willing to ask for help. I have a better relationship with the loved ones in my life than ever before. I wouldn’t trade all of that for the old life. I just wish the cost wasn’t so high.
jane gross said on June 27, 2011
i am happy to chime in from time to time. and HONORED to be featured in your book club. indeed, you were one of my major resources when starting “the new old age” blog for the new york times, after i took a buyout there in order to (mostly) write my book. on-line support like this wasn’t available during the last 4 years of my mom’s life —– 1999-2003. that is part of why, afterward, i created a new “beat” at the NYT about the intersection of the two generations, moved from there to the blog and onto the book. ( i agree with everything jo says, above. those years were both the hardest and most redemptive of my life. i found my family. i found out what i was made of. and, in the interests of full honesty, i sometimes wished my mom would hurry up and die. i know i didn’t kill her by wishing that —- or by fantasies of running away from the situation. that is magical thinking. she died when she was ready and i was there for her the whole way. but for my brother —– sometimes great, sometimes not so great —– i was mostly alone. friends, not in the throes of it yet as we were late children and thus ahead of the demographic curve. and they tired of my wailing pretty quickly. no husband and no kids so pretty scared about what lies ahead for me.
jane gross said on June 27, 2011
PS/ i have cross posted on the fan page for “a bittersweet season,” thanking you all for your support, not in my own caregiving years but in the many years since while reconstructing them. the page has not only reviews and interviews related to the book but also articles and my personal screeds about this country’s shameful public policy, or lack of one, for any of us. the fan page is https://www.facebook.com/JaneGrossAuthor. cargiving.com is also quoted in the book (and indexed!) and listed in the appendix.
Denise said on June 27, 2011
Hi Jane–Thanks for including Caregiving.com in your book–I appreciate that very much.
Just a correction: I launched Caregiving.com and the first of many online support groups (through listservs, i.e., an exchange of email messages) in the fall of 1996. I wasn’t the first online with a website or an online support group for family caregivers, although I was among the firsts. The online support groups on the site were as active then (particularly between 1997 and 2004) as the blogs are today.
Online support was available when you were caregiving, but it’s a common refrain I hear–that many didn’t know it. I guess many just didn’t think to turn to the Internet for support.
I hope you’ll join us in September when we celebrate Caregiving.com’s 15th anniversary with our Caregiving Art Show; details are here.
The Unit Known as Shandi said on June 27, 2011
I can relate to a lot of what you were saying in your interview. I honestly don’t know how I would have gotten through the past 5 years of round-the-clock care for my Mom without caregiving.com. May people encourage me to join a local support group, but I don’t feel the need for it because of this website. Thank you for sharing so honestly. I’m glad that you have made peace with your brother’s role in your Mom’s care. Many of our bloggers, including myself, have talked about coming to peace with the role that other family members play. I’ll plan on reading your book soon.
Karen said on June 27, 2011
I would have to agree that you can’t get your life back. But you can find more meaning in life. If you can put aside the resentment of lsoing your old life and look for the good in your caregiving life, you build a more meaningful life for yourself and your caree. Life constantly changes, whether you are a caregiver or not. We can’t always control the changes, but we can consciously work to affect our own attitude and reaction to those changes. We can look for blessings rather than burdens.
Donna Webb said on June 27, 2011
Hi everyone, the prodigal returns lol. Just wanted to add a bit to the conversation. As most of you know, I took a step back from all things having to do with caregiving after mom passed away last August. I stopped blogging in all my blogs, stopped doing my blogtalk radio show, and basically stopped contributing posts on here. I needed time to heal, to find out what was next for me. I didn’t want to go back to work but I knew I had to. Well, in Feb. I was hired by a homecare agency as a in-home caregiver. Unfortunately, some situations took place, false accusations made etc. and I was let go. Anyhow, I am now putting together a portfolio for whenever I go on job interviews, and I am looking specifically for private hire work. I am also looking for work in the retail/management areas…where I did not want to go again! But, I will take a posittion in that field as I build my clients in the home care field. I found that taking care of others was what was right for me, even after all the years of taking care of mom and the stress, isolation and so on that I went through, caregiving is what I need to do. So, what was the question? Oh yes, can you get your life back after caregiving? Absolutely. Just give yourself however much time to grieve and heal..and time to think and plan. Love to all!
Trish said on June 27, 2011
This was an excellent interview and discussion. Note to Jane: I truly appreciate your candor and honesty and plan to buy your book and check out your facebook page. I would have loved to hear more about the question about getting your life back (and understand about TV and it needing quick soundbites!).
I care for my disabled brother and, like many others here, actually wouldn’t want my life back. I feel since taking over the care of my brother, I have found a calling (although I realize that has religious overtones and I’m not particularly religious). I have found myself wanting to not only help Robert but to help others caregiving for their loved ones and, also, to make care facilities really accountable for their actions! I can relate to your sentiment about not having a particularly close relationship with your mother but growing closer — most people here wouldn’t believe that Robert and I were not very close before I started caring for him.
Anyway, I so appreciate the community Denise has created here. It truly is a lifesaver for so many people.
Great to read everyone’s comments!!
Trish
http://www.robertssister.com
caregiving. family. advocacy.
Twitter: robertssister1
Kathy said on June 28, 2011
I can say without reserve that at the end of my caregiving journey I will not get my life back.
I will have life, a very different one and I will have to re acclimate to my surroundings, my community, my church and even my family.
I will have to seek employment and live a very different life style.
My life partner will be gone, my caregiving responsibilities over. I hope and pray that the journey makes me a better person and friend.
No, I wont get my life back, but perhaps the new life I choose afterward will be greatly enriched by the caregiving experience.