As caregivers, we spend a lot of time with the person we’re taking care of. Sometimes that leads us to neglecting other relationships…and sometimes the time is never quite right to say what we’ve been meaning to say.
Here’s what our community members wish they could say to someone they love, in 5 words:
I got my bachelor’s degree. To my dad. Quitting school was the one thing about which I felt I’d let him down. – S.S.
I understand and forgive you. – S.L.
I’m sorry I hurt you. – T.M.
I value your love Mom. – S.S.
I love you so much. – K.E.
Why do you do this? My dad never calls or talks to me. What did I do wrong? – J.D.
‘I love you’ to my dad…we never said this to each other. – J.E. & D.B.
“We finally planned our wedding-date” to my Nana, she helped raise me and passed on May 2nd 2015. She will not get to see get married. – D.Y.
You tried your best, Dad. – J.W.
I love you. I’m sorry. – F.H.
Thank you grandpa and grandma!!! – A.S.
You were always my hero. – C.R.
Thank you for raising me. – S.R.
I know you meant well. – P.C.
Wish I could have helped. My close friend lost battle with addiction. K.C.
Goodbye I love you Grandpa! – D.S.
You were always my rock! (To my Daddy) – K.J
Thank you and I’m sorry. To my mom. – P.V.
Tell me your story, Grandpa. – C.H.
Please forgive me. I’m sorry. – B.P.
I’m taking you home now. – S.S.
Why didn’t you tell me? – K.K.
Your granddaughter is 21 today. – S.H.
I forgive you dad! – L.S.
You can let go now. – C.V.
Dad, you tried your best. – B.S.
You have changed my life (for the better) – A.Z.
You were my life, Garry. – S.N.
You’re the definition of cool! – S.R.
I love you. To a boyfriend that died in the Army. – E.H.
Sometimes we just can’t get it out in five…
I love you thank you for raising me I’m sorry I wasn’t appreciative and loving to you I should of listened to you about him I’m a good person because of you. – R.G.
Thanks Daddy for being the best!! I love you!! – J.R.
Where did you hide the money? – A.L.
I will love you always!! – S.L. & T.C.
Writing is a way to find your voice
When you’re taking care of someone else, so much of your life becomes about them.Sometimes it can feel like you’ve forgotten who you are anymore. Writing is a way to reconnect with you — what you’re experiencing, your opinions, your passions, your hopes.
Writing out your experience lightens the load
It can get so loud in your head. The volume on the cynical dial is turned up so high your neighbors are knocking. Everything feels dark, scary and confusing when it’s all kept inside. Writing is a way to relieve you of the mental burden of worry, anxiety, anger, and other exhausting emotions. When we keep our scariest thoughts locked upstairs, it’s no wonder we feel alone. Getting them out on the page, sharing them with someone, takes away some power of the thought. Writing releases you from thoughts moving in torturous circles.
It helps others to read your experience
We never know how our experience can benefit another. Often your story provides a reader with a relief from his/her thoughts. Your story helps the reader feel “apart of,” rather than “apart from.” Sometimes it’s just nice to know that we’re not the only ones going through this. The ways you cope and care might be new techniques to another caregiver. And you might learn from others by reading their experience too.
It’s a great way to meet people
Writing about the things that interest you and what’s going on in your life is a great way to connect with other people who share those interests and experiences. Every piece you write is the chance to start a dialogue with other caregivers. Many friendships had their first spark in the comments of a blog post.
A response from another caregiver makes you feel less alone
There is almost nothing as healing as hearing the words “me too.” Shame, guilt, and worry can leave you feeling so alone. But when someone else shares that they are going through the same thing, you’re part of a team. The pain of feeling different is lifted. Don’t worry, another caregiver knows what you’re going through.
We’re always looking for guest authors to share their caregiving story. If you’re interested, please consider writing for us!
Join Adrienne as she discusses writing exercises that encourage and support you to stay in touch with who you are and what you want. As you learn and practice using writing as a vehicle to take you out of your current environment, it becomes easier to reclarify who we are and reassert our own identity.
Hear how Adrienne used writing stories to remind herself of her life before caregiving and how doing so helped put into perspective that caregiving was only one part of who she is. In all the ways that caregiving is a beautiful and generous gesture, it can often steal away our sense of self. Using reflective writing practices are a fantastic way of inviting a deeper part of our self back into our lives.
Join Adrienne in this segment of The Page Listens to learn how to explore all corners of your mind on paper. Personal writing can be one of the most freeing, therapeutic and nourishing practices you can gift yourself.
Listen in as Adrienne offers prompts and exercises that will encourage you to step out of your daily caregiving world and into new spaces. Sensory writing encourages us to focus in on our different senses to encourage more rich detail in our imagination. We benefit from exercises like this as it enrichens the quality of our writing and simultaneously offer a meaningful respite from caregiving by whisking our minds away from stressful moments and into a more serene and relaxed environment.
Click below to listen in and begin your own sensory writing exercise.
Prospective makes all the difference, it’s not what you look at; it’s what you see – Steve Maraboli
In this week’s video segment, join Adrienne as she encourages you to explore all the different identities that define who you are. In choosing to shift the perspective on how we see ourselves, and our world we often gain a refreshing, novel and clarifying grasp on what’s real and true in our own lives.
Watch as she shares favorite quotes, stories and exercises that invite all caregivers to consider a different point of view. Using writing as a medium to explore these different pieces of ourselves help us appreciate who we are and hopefully inspire us to continue to look deeper.
Legacy writing is a wonderful activity to do as a family. It brings people closer and creates a special connection as you share and re-live memories together. Some family members are eager to share, while others may take many attempts before you can get an easy conversation flowing. Remember – get specific and don’t give up.
Aging can be a very undignified process, full of loss of control, loss of independence, loss of identity, and loneliness. Encouraging elders to reflect in this way helps them see what a meaningful life they’ve actually had. Some elders become depressed and start to shut down. By asking thoughtful questions, you can remind them of things they might have shut themselves out from.
Some people might gawk at the idea of this kind of work because they sense it could bring up the uncomfortable feelings of mortality they would just as soon not deal with. But doing legacy writing doesn’t have to done near the end of life. It can be thought of at any age as a memoir, an autobiography, or a biography. Grandparents can take comfort knowing for certain that their values, concerns, fears, desires, as well as the history, have been recorded for their grandchildren and generations to come.
Learn more about legacy writing before you dive in by watching this video.
Sit down, surround yourself with mementos and photos to spark a conversation, get comfortable. Here are some questions to have on hand to get the conversation going and keep it moving, but be sure to ask specific questions based on what they’re telling you.
Questions to ask
What are your earliest memories?
Did your parents ever tell you about when you were born?
Is there a meaning behind your name?
Where were you born? What was your town/neighborhood like?
What are your favorite movies growing up? Why?
What was your childhood home like?
Who was your favorite neighbor?
Did your parents have a happy marriage?
What did your parents do for work?
What do you remember about your grandparents?
What were your brothers and sisters like?
What were you like as a child?
Where did you go to school? What was it like?
What was your favorite book/radio show/movie growing up?
Was your family religious?
Who was your best childhood friend?
Tell me what the world was like when you were a kid.
What did you do in the summers?
How is childhood different today?
What did you want to do when you grew up?
Where did you like to hang out in high school?
What fads were there when you were young?
How many times did you move as a child? As an adult?
Who was your first love?
What was your first job?
Who was your favorite boss? Your least favorite?
How did you meet your spouse? How did you know he or she was ‘the one’?
How and when did you get engaged?
How old were you when you got married? What was your wedding like?
What was your first big purchase as a married couple?
Who are their favorite movie stars?
What was your greatest career success?
What were your parents like when you were an adult?
What was the biggest sacrifice you ever made?
When have you felt like a hero?
What was the most difficult thing for you to get through? How did you deal with it?
Who was very influential in your life? Who mentored you?
What are you most embarrassed about?
What are you most proud of?
What friend have you known the longest?
What is your favorite story about each of your children?
What was the hardest part about raising children?
What was the best part about raising children?
How are your children like you? Different from you?
What do you wish you could have done differently as a parent?
How many grandchildren do you have? What do you like to do with them?
What makes you proud of your children? Your grandchildren?
What do you know about your ancestors?
Does your last name mean something? Where in the world is it from?
How did our family come to this country? Who came here first?
What family traditions do you have?
What was the most important values for your parents?
What were the three biggest news events during your lifetime?
What was the best compliment you ever received?
Who is your closest friend today?
How have your values changed as you grew older?
If you could relive any year from your life, which would you choose?
What advice would you give yourself at 10? 20? 40?
What brings you the most joy?
What do you look forward to?
What is love?
What makes life rich?
What’s the most important thing for living a good life?
When all is said and done, what would you like to be remembered for?
What would the title of your autobiography be?
In this segment of The Page Listens, tune in to hear founder, Adrienne Gruberg discuss the practice of legacy writing. Listen and learn how you can help document and tell your loved one’s story.
Legacy writing can be a beautiful practice that helps transform someone’s memory into meaning as you create space for their story to come forward.
Learn about the questions and approaches that can make this gesture a meaningful and rich experience for both you and your loved one.
Join Adrienne this week for an exercise in counting your blessings as we reflect on the past year and our caregiving journeys. The lives of caregivers can be especially difficult but each of our daily lives include things that make us smile. The simple act of reflecting on the moments that bring us joy, both big and small, has been shown to make us happier.
There were no alarms set to wake us for work, so we slept until we felt the need to get out of bed. Not even get out of bed; just up, not out. Anything that needed attending to could be handled over the phone or on the computer. If we needed groceries, I’d order from Fresh Direct. If we needed anything from the pharmacy, I’d call BioScrip for a delivery. If Steve wanted a new gadget, there was Amazon. We lived on bagels and tuna fish salad from The Corner Café on twenty-fourth street and sixth avenue and chocolate chip cookies from Trader Joes. The Corner Café opened on the spot that had been the old almost-landmark status Billy’s Topless bar around the corner from my old office. The whole corner used to reek of piss. Now, it’s a bagel place run by Evita; a lovely lady who knew me by name and always came through for me when I needed her. Cultivating good relationships with local merchants is an essential caregiver tool—if they know you and remember you, you’ll grow to count on them—and they will come through for you when you need them.
When Steve’s mom, Sylvia, was still alive, I’d sleep with one eye open knowing she was an early riser who’d go to the kitchen for her ritual bowl of Cheerio’s and skim milk so she had something in her stomach when she took her medication. Then she’d go back to bed until about eleven to rest up for her shower. It was not an easy task getting her to agree to tell me when she was going in to shower. I didn’t want her to fall and I finally forced her to use a shower chair so she could enjoy her beloved shower-time rather than fear it. Access to her bedroom and bath was through my office and after Syl died it took a while for me to realize the door in my office wasn’t closed because she was sleeping; it was closed because no one was using the room any more. It wasn’t easy shaking off her presence.
Steve was always big on sleeping. From the beginning of our relationship he slept a lot. It was his escape. He always thought he was dying; and then he was—thirty years later. Before he was sick, when he stayed in bed, it was okay for me to take myself to a movie or lunch or a museum and just leave him to mind himself all day. But after he was in recovery from one lung surgery, another stomach surgery or in the middle of treatment, I would end up staying in bed with him. It was our default setting. He wanted me close. He needed me close to feel safe. I was the one who reassured him “No. You’re not dying. Yes, what you’re feeling is different. It’s always different; every time.” So for years, literally, I was in bed with him. We’d watch baseball or movies or the shows we’d recorded the night before. When he was awake and engaged in a ball game, he was very much alive; he loved baseball. He would call the game for me, as though he was in the announcer’s booth. I think the last year of his life we missed maybe three games during the entire season. I miss that. It’s hard to watch a game without him. Even when we’d lie in bed and he’d be playing games on his iPad, we were together.
Together yes, but I was lonely. Having a universe that consisted of Steve and Sylvia’s doctors—Gruenstein, Matta, Gribetz, Azzoli, Swanson—and their respective staffs and waiting rooms, somehow didn’t cut it. The people involved in the medical aspect of my life marveled at my abilities as a caregiver and I was well liked and well respected. My other daily contact with cabbies, doormen, wait-staff and the super in my building, did not make for a very satisfying social life. If it had not been for the Internet, Facebook and email, my life would have been untouched by the outside world, save for the nightly news and talk shows.
Seven p.m. meant “Jeopardy.” Another Sylvia ritual that became Steve’s ritual—almost as a gesture to honor his mom. Syl would amble into the living room in one of her many floral housecoats and we’d watch together with Steve calling out his answers from another room. Every night like clockwork. After “Jeopardy” at seven-thirty on the dot, Syl would make her daily call to her sister-in-law Muriel. Every day without fail for years. When this pattern started to change, it was my cue that something was amiss. Sadly, as a caregiver, we can’t fix everything and in Sylvia’s case, the change signaled her demise. I hardly watch the show anymore. It’s too emotionally charged.
When Steve slept, I’d design checklists for his medications. These worksheets became increasingly complicated and I needed to keep simplifying them as his cognitive skills began to change. Adapting became a constant trial for me. Patience was the order of the day for years. When I finally told Steve I couldn’t do it alone any longer and we had someone come in to be a companion for Sylvia, I was still caring for her most of the time since I was the mind reader and we each knew what the other needed without words. Mother and son were my responsibility.
But when they were both resting and the house was quiet, the loneliness was unbearable. Television was my sole companion. My artwork had become too invasive to do at home, and I had taken a small studio with the hope that I could get there for just a few hours a week; it was not meant to be. I had to be within reach at all times. This scenario brought me to writing.
I cannot stress enough the value of “writing it out “ and putting your feelings on a page. Whether it’s scrawled on a napkin or kept religiously in a journal, writing can be your salvation as a caregiver. It’s portable. It’s quiet. You can pick it up and put it down easily. Your supplies are cheap, although in my case, I had a special pen and leather bound journal to make the entries more significant; they were for me.
The Internet was my other savior. Chat rooms. Journaling. Discussion boards. Medical research. Expert articles. Shopping online. I’d bounce from one site to another looking for solutions, experiences and companionship. When I found them, I embraced them. I respected them. I nurtured them. The loneliness didn’t vanish, but I was no longer alone. There were others going through what I was going through, and that was a comfort.
I learned in time that writing online was the most effective way, for me, to create a sense of community; to feel connected; to be a member of something bigger than myself. It’s as personal or as anonymous as you want it to be. But it’s “writing it out” that has a cleansing, purging effect. The sense that someone might be listening helps some people. The privacy of a diary helps others. But write. At least try it.
Why is it that men have such a hard time asking for directions when they’re lost? I mean, this is a question that has plagued me all my life. I can remember sitting in the back seat of my father’s care listening to my mother’s relentless nagging. “Irving. There’s a gas station. Why can’t you just pull over and ask for directions?” He never did. We always got where we were supposed to be going, but it was always an adventure. I suppose having GPS available in every car has taken much of the drama out of family trips these days.
It seems to be the same way with men needing help with anything. My husband Steve always tried to assemble things without looking at the enclosed instruction sheets. Why do men attach so much shame to asking for help?
Which leads to my real topic: How do you get men to reach out for support when they are faced with caregiving or patient challenges? As I came to find out, the sheer relief of sharing my reality with other caregivers gave me enough strength to carry on for as long as needed. It turns out, I still have that need. My partner of twenty-six was diagnosed with lung cancer in March of 2005, a diagnosis that came out of a CT scan that was taken in the emergency room where he was admitted for acute peritonitis. He was in an induced coma for five days, and when he came to he asked me to marry him. I told him to ask me again in three days, once his head had cleared. He had no idea how close to death he had been until a follow-up visit with our physician, when the doctor told him, “Steve, you were circling the drain.” During that same visit, we were told the scan that had shown them the peritonitis also showed he had lung cancer.
There were several surgeries that year and we were married somewhere in the midst of them all. There were many subsequent scans and tests and we had been told it was just a matter of time before there would be more cancer. Sometime during 2008, Steve’s mother was diagnosed with lymphoma – she was 89 at the time. We had her move in with us and I was now taking care of two cancer patients, since even though my husband’s cancer had not yet reared it’s ugly head again, we lived with the threat of it every day.
I am a veteran of Twelve Step programs and was quite accustomed to reaching out, from both sides of the aisle, but it took quite a while for it to dawn on me that there might just be help for caregivers online. Once I “surrendered” to the idea there might be relief out there, I couldn’t stop looking for it. My mother-in-law had been living with us for over a year when I had finally reached my bottom, and she was a sweetheart. There was absolutely nothing left in my life that seemed to be about me.
So first I started writing in an online journal. Day-to-day happenings. A record-keeping system if nothing else. Little by little, I started to let personal things creep into my work. So I looked for a place where I might make the move from monologue to dialogue; and soon thereafter, dialogue to group. The beauty of all this was, it was anonymous. I could bare my soul and no one would know who I was unless I sought to make it that way. Now I can understand that men – being the strong, silent sex that they are – fear showing weakness or need. But, there’s the bit about anonymity that makes that fear unrealistic. You can find places where you can write of your innermost fears and sorrows, share them if you wish, and never worry about being judged. The only person who knows who you are is you. You just have to take the first step and accept that maybe, just maybe, sharing these innermost feelings will be the liberating factor that makes the tough stuff easier to bear.
I have followed men on many discussion boards I’ve visited. They’ll ask a question, get any number of replies and take the bait. They see that they’ve gotten replies from other men – one’s who are willing to share. They might have been nagged into going, but they slowly visit and re-visit these discussions and find a home. They literally make a name for themselves––a screen name––that others come to recognize and respect and seek out for advice. Aha! A vestige of power has been restored. It’s a place to feel valued. I asked some of these men, who had lung cancer and were in treatment, to be my friends and let me email them with honest, hard-to-answer questions. I let them know they could tell me anything. Once they become engaged with a situation and get a feel for it and you, a sense of trust enters into what is becoming an online relationship. Why is it then that so few men are willing to try this out?
TreatmentDiaries is a website that was specifically designed to engage people living with any health condition and their caregivers in diarizing; anonymously notating what was going on in their daily lives. The site is succeeding in attracting men, including male caregivers. BreakthruGrief is another site targeted at men––bereaved men––and does it in anything but an anonymous manner by videotaping an interview with Len Heisler, the site’s founder, and men who volunteer to share their own personal grieving process on camera. There are happy mediums. You don’t have to be a completely unknown entity if you don’t want to, but if complete privacy is what you need in order to be comfortable sharing, it’s there to be found.
I know what the power of writing can do for both caregivers and their care recipients. I dearly wish my husband had taken advantage of the sharing platforms that were available to him; both as a caregiver to his mother (which he sometimes was) and as a cancer patient. I’m standing by my feelings by founding The Caregiver Space. It’s a place to be private or public; to be solitary, join a community or form your own. My dearest hope is that you will find comfort in writing it all down. Every last feeling.
I don’t know about you, but I’m really tired of going to websites and reading that I have to “take care of myself” if I’m going to be able to take care of the patient. Now, this isn’t just on one or two sites, it’s everywhere. Don’t they realize that we already know that? Even when the plea to take care is accompanied by a long list of helpful hints on how you can do that, it seems that they’re reminding me because they know it’s close to impossible to do.
I’m coming from a place where it’s over a year since my husband Steve passed away, but I’m still in caregiver mode. I have his businesses to run and all of the estate work to handle. I have closets full of clothes that I’ve been emptying and donating, but closets full of “stuff” still remain. There’s the closet behind the bed that I lovingly call “the garage.” Of course it’s not a garage; I live in Manhattan where only a handful of people are lucky enough to have their own garages. I refer to it that way because it contains years and years of collected electronics (with or without their wires, which inhabit a space all their own, waiting to meet up with the device they belong to). It also holds toys and gag gifts and all the things Steve could never part with; each item has its own story. The rubber chicken; the Star Trek Barbie and Ken dolls; the shoeboxes full of old remote controls and twenty years worth of old cell phones. The garage is loaded with memories that go way back and I have a hard time dealing with them. In this instance, my self-care is just allowing myself not to deal with it until I’m ready.
That’s the way it is with a lot of things. I have so much practical reality to deal with that the really tough emotionally loaded stuff can wait. In my situation, I’m lucky enough to be able to let it sit for a while. I’m not moving and I don’t need the space––yet. We all have our own ways of taking care of ourselves and I’m allowing myself to take it easy, after years of giving care to my husband. I have to remember it’s all about me now. I know I’m still saying “we” and “us” and “our” but taking care of me is still so involved with taking care of “his” stuff that life still feels like it’s “us.” He’s gone, but he’s so very much here. Caregiving doesn’t just stop; it’s a part of who I am.
The most important thing I have to care for now is this website; there is nothing more important in my life. Yes, it is a result of a caregiving experience because I wouldn’t have been immersed in all of it without Steve’s cancer. During the last weeks of his life, I knew that this was my mission; thinking about it and what it can and will do is what keeps me going. I think anything I do that involves this site is self-care. I do know, however, that this keeps me in “caregiver mode;” only now I’m aiming to give care to caregivers. I can’t help myself; I’m a nurturer. Helping others makes me feel good. When it dawned on me that I should finally reach out and ask for help for myself, I was fortunate enough to discover The Wellness Community. Though it is now The Cancer Community, their method of sharing with other people is what gave birth to The Caregiver Survival Network – now known as The Caregiver Space.
Every Monday night for an hour-and-a-half, I would make myself unavailable to Steve – unless there was an emergency. There was no conversation; nothing to be overheard except the clicking of the keys of my keypad as I’d meet up with ten or so women week after week. That was my primary self-care. Keeping and posting a journal was self-care. Leaving notes for my fellow caregivers that brought them up-to-date on Steve’s condition was self-care. It was Steve’s condition that brought me there; but once I found an outlet for everything I was keeping bottled up inside me, everything I was feeling came pouring out; and I found great relief.
I also discovered Cancer Survivors Network, which is part of The American Cancer Society’s sharing initiative. Their discussion board was broken down by type of cancer and by patient and caregiver. There were also bereavement, gay, and memorial tribute sections. I read a post from a woman titled “My family has become invisible,” and I responded to it. I immediately related to this woman, though our situations were different, at least, on the surface. After a few posts back and forth, I wrote her an email on the site asking if she would be interested in having a pen pal. Happily she was, and we wrote each other almost every night. This connection was a commitment to someone other than Steve and exclusively for myself. It was one of the most important things I did to keep myself centered.
Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for
Because I couldn’t leave the apartment for face-to-face meetings that would take me away from Steve for hours, and I couldn’t deal with a phone session since he was a supreme eavesdropper, writing became my greatest source of relief. Sure I knew how to eat properly. Sure I would get up and walk around the block or get out of the house for “shopping therapy,” but there was never enough ME time for me to feel fully cared for. I know it sounds corny and all “new-agey” and such, but putting “it” out there, into the universe, for others to see literally feels good. Writing all I was feeling down, freed me up to talk to my friends about things other than Steve’s condition; I no longer had to “dump” all of what I was feeling on them. It gave me back a big piece of me.
So…I’m not saying not to eat properly or not to exercise or not to have a network of people to help you with your caregiving; what I am saying is write and share and write and share some more. Even if it’s only a sentence. Try and see how it feels just to write down: “I can’t take it anymore.” Get angry. Feel sad. Feel helpless and afraid. Let it go. There are others who share your feelings. You have found a place where YOU are all we care about. There is no reason for you to go through what you are experiencing alone. You can find other caregivers who have things in common with you. Use this place as a respite from your caregiving responsibilities or use it to help you cope. Our aim is to provide you with a convenient outlet to FEEL YOUR FEELINGS as well as being a resource for your other needs as caregiver. But our main focus is you.
There are lots of ways for you to share your story. You can keep it in a notebook. You can keep it in an app. You can connect with other caregivers on our forums or in the caregiver chatroom. You can share your story in a caregiver profile, send in a blog, or even become a regular contributor.