Last year, a dear friend of mine lost her husband of 36 years to colon cancer. She’d been his caregiver for half their marriage, yet they had a relationship to envy. No discussion was taboo between them. Honesty was valued and expected. He was her advocate, her cheerleader, her defender, and she was his. They could make each other laugh, even during the darkest times. Don’t get me wrong. It wasn’t the stuff of Hallmark movies, but as she would tell me now and then, “He’s so damn hard to stay mad at.”
When he died early one morning, asleep in the bed that hospice had brought him, she called me a few hours later in tears, “He’s gone, and I feel relief.”
Her words made perfect sense to me – an honest reflection of the duality of life when caring for someone we love. Seeing them hurting, declining physically, and, in some cases, mentally, is often the hardest part. But, when their pain is gone, our sorrow is tempered slightly, because we know they’ve been released and are finally safe.
Even with that said, there have been too many times when I’ve heard caregivers apologize for speaking this feeling aloud – maybe for fear of being judged by the listener, or by themselves. Then, it becomes one more burden for someone already dealing with a heavy heart.
So here’s the takeaway, dear friends. Relief is a natural reaction to grief, stress and worry. It doesn’t mean you loved the person any less. It doesn’t mean you wouldn’t do anything for them if they were still alive. It doesn’t mean that you won’t continue to experience a deep sense of loss. It means you’re human.
Feel what you feel without guilt, shame, or second-guessing – because this is how the healing begins.
A painting of mine entitled, “Tending to Our Grief”
If you feel like you’re wading through quicksand sometimes, here’s Part Two of my interview with Colleen Kavanaugh of The Longest Dance. Relatable and compassionate, her experience in helping other caregivers find solid ground offers a sense of hope that you can see this caregiving journey through and come out stronger on the other side. It’s reassuring to know that’s possible.
What is your advice to someone who is new to this journey? Get help. I like to use the example of hospitals and other care facilities to illustrate that it takes a village. These communities have a staff of hundreds to handle the care of each patient or resident. One person isn’t assigned to care for another. One person handles a component of care. And, that person doesn’t work 24/7. In whatever way you are able to supplement care or hire out for certain chores and responsibilities, do it. Have experts you can call on for certain issues like legal and financial matters. Think of your caregiving role as a manager building a team of support for you and your caree. Try to remember that you don’t know what you don’t know. But know that you know enough to know you need help.
It’s easy to lose our other selves when we’re caregiving. Share something about you that is unrelated to the caregiving role. Being at the beach, any beach, is my happy place. And I love eating fabulous food. In fact, I am doing this interview with you while waiting in line at Franklin Barbeque in Austin, Texas. While I wouldn’t have flown to another state for barbecue as a caregiver, I did allow myself to rent a beach town’s teeny tiniest bargain rate cottage 8 blocks from the ocean that was just a 20-minute further drive to my Dad, who was at that time in a nursing home during what would be his last summer. I was able to be with him daily, but return to my happy place and give my son a bit of a vacation. I share this story to show that there are ways to creatively sneak in your own joy during what can be the most difficult time of your life. Maybe it’s a class that meets at a time when you are able to get care coverage, or a two-night getaway when a sibling comes to town and can stay with your parent or loved one. Even just a quick manicure before you head into the grocery store can make a difference.
Artists aren’t the only ones with creative gifts. For some, it’s painting or music. For others, it’s making people feel comfortable or cared for. What’s your gift? Maybe a bit like you, Judith, as a “hyper-responsible oldest child,” I have a gift for being hyper-organized. I love connecting with others, and when that connection comes with the opportunity to help them organize their desk, sock drawer or now – medical records, I am in heaven. I am invincible with a well-crafted list and was known at my parent’s doctor’s offices as, “That girl with the clipboard.” Inefficiency drives me wild, and as you can imagine, the unpredictability of caregiving tested my patience like nothing else. Organization was truly my best friend. Don’t underestimate the power of your natural gifts to assist you during your time as a family caregiver! Reflecting back on my experience, if I had to do it all over again, I would tell myself each day to:
- Acknowledge your role
- Prepare as best as you are able
- Look for the light within the dark – it is there
- Subversively sneak in joy whenever and wherever you are able
- Lead your team to support you and the person for whom you care
- Use your natural talents to help in your own uniquely empowering way
And know, above all else, that you’ve got what it takes.
What doesn’t kill us makes us stronger. I am living proof, and you will be too!
For my guest, Colleen Kavanaugh, being a working mother, a daughter, and a partner are a few of the identities she’s comfortable with. But, when taking on the heavy responsibilities of advocating for a mom with Stage-4 breast cancer and a dad with Alzheimer’s and Parkinson’s, she wasn’t quite ready to add “caregiver” to the list. The result was a situation where she ended up doing everything on her own, with no safety net of support. Sound familiar? Founder of The Longest Dance , both a certified caregiving consultant and a certified dementia communication specialist, Colleen is also a daughter who has walked a mile in many of our shoes. I’m so pleased to share her story and the powerful lessons she’s learned in this first of a two-part interview.
What were the circumstances in which you found yourself in the role of caregiver? This question always puts a line from The Talking Heads song, Once In A Lifetime into my head, “And you may ask yourself, well, how did I get here?” During my decade of caregiving I asked myself that question, in David Byrne singsong cadence, over and over again. Caregiving was certainly never an activity on my list of things to do, that’s for certain. I look at my tenure as a family caregiver as what insurance policies call an “Act of God”, like a storm that you hear happening to other towns but never yours. My parents were diagnosed with diseases and needed care. Period. No choice. No picking what is behind door #2 after door #1 had been opened. To reductively sum up my caregiving storm in one run-on sentence…. I was a 34-year old newly divorced parent of a toddler, working full time when I began caring for my mom who was diagnosed (and lived a prognosis defying 3 years) with stage-4 breast cancer and within 9 months of her dying, I began caring for my widowed dad who was diagnosed with Alzheimer’s and Parkinson’s diseases, all the while attempting to live my own life (which now included a new partner and his two children) while dismantling my parent’s very complicated lives.In the midst of it, not unlike being in the middle of a catastrophic storm, I was unable to control the forecast (the diagnosis), but only able to control how I dealt with storm prep and clean up.
What was the most difficult part of caregiving? Was there a positive side to it? If so, please describe. The most difficult part of caregiving, for me, was acknowledging that I was a caregiver. This denial was detrimental to my getting the support I should have gotten in order to manage the stress that I wore around my neck like an invisible barnacle. Even during the times when a parent’s care consumed my life, I was still a mother, partner, daughter, employee, volunteer and active daydreamer. I think part of denying my role was that I ultimately did not want to be doing what I was doing. And what I was ultimately doing was watching my parents die from terminal, degenerative illnesses. Who wants “Death Sherpa” on their business card? I certainly didn’t. That said, the flip side of my business card would have read, “Life Igniter” because, amid the intensity of the worries, endless to-do’s, and perpetual grieving, I truly learned how to live. I met death close up and it whispered to me that I needed to make the most of the unknown time I have left. The intensity of emotions and situations that exist within caregiving are a nonstop roller coaster ride of grueling climbs to a pinnacle that once reached, hurl you off the top into a descent that you can not prevent, control, or escape. It’s nausea inducing at first but slowly, over time, it becomes your new normal and you are no longer getting motion sick at each free fall (or in a caregiver’s case, each health decline, hospital visit, 911 call, or middle of the night crisis). When my caregiving ride was finally over, I knew I could not just walk away from all that I had learned. If an ounce of my experience could be of value to another family caregiver, I needed to share it and give others the practical support and encouragement I so often wished I had, but didn’t know I needed.
Please come back for Part 2 of our interview on Friday, April 28th. In the meantime, be sure to check out Colleen’s website to learn more about the services she offers to caregivers, and sign up to receive some valuable (and free) organizational tools for making life a bit easier.
I’m so pleased to post this recent interview with April Koontz, creator of DaughtersUnite, “a place where daughters can turn for streamlined information and support from other daughters who have already walked this journey.” April’s open and honest story is one that many of us can relate to as we care for a family member, or two, or three. And I love her belief in the collective wisdom and knowledge that we can share to support and encourage each other. I also want to thank April for the beautiful illustration she designed especially for this piece. It’s a true reflection of warmth and spirit.
You’ve mentioned before that identifying as a caregiver came as a surprise to you. What were the circumstances when you first realized that you were a caregiver? I was the primary caregiver for my younger brother who suffered from severe bipolar disorder and polysubstance addiction for over 15 years prior to his sudden unintentional overdose in 2010. During his illness I never once identified as his “primary caregiver”. The term was never brought up by any of his treatment providers and it’s actually not a term that is used as much in the mental health arena. All I knew at the time was that I was his sister who happened to have a Masters Degree in Social Work and knew better than anyone else in my family how to navigate the mental health system. Five years after my brother’s death, my mom’s sister (my aunt) who lived in St Louis and was the primary caregiver for her husband (my uncle) who had Alzheimer’s, fell and broke her ankle. It was Christmas Eve and my aunt and uncle had no children and were fairly isolated because of my uncle’s hoarding disorder. Subsequently, my mom and I flew from Raleigh to St Louis the day after Christmas to provide as much support as we could. When we arrived, we realized there was no way the two of them could continue to safely live in their home. Within two months, we moved them across the country which was truly the most monumental job I’ve ever had in my entire life. My aunt has a multitude of chronic medical conditions herself so establishing medical providers, transferring their Medicare and actually providing ‘hands on’ care to both of them in addition to managing the sell of their home, cars and financial accounts was indescribably stressful. It was during this time that I was exposed to the ‘primary caregiver’ label and the plethora of caregiving resources and support available. The issue then was there was so much information that I was completely overwhelmed again.
What has been the most difficult part of caregiving? What has been the most positive? The most difficult part was the all-consuming nature of it. My mind was completely hi-jacked by every aspect of two other people’s lives including their physical and emotional health needs, their legal and financial needs and their 1800 square feet of wall-to-wall ‘stuff’. For two years I was sorting through mounds of bank accounts, IRAs, credit cards, life insurance policies, subscriptions, prescriptions, utility accounts, car titles and filling out new patient forms for every new provider each one of them established treatment with – which was a total of at least eight. Oh, and the grocery shopping, rides to and from their medical appointments, coordinating their care with their specific providers, picking up their prescriptions and remembering to have them refilled, bathing them, cleaning up their incontinence episodes, figuring out why their TV wouldn’t turn on or why their Internet was down and rushing over when one of them would fall. My uncle died of a sudden heart attack three months after their move which was definitely a blessing in disguise since his Alzheimer’s was worsening – however, I was then tasked with managing all of the activities that go along with a person’s death.
The most positive part was that I knew I was supposed to be helping them. The day my aunt called to say she had fallen and broken her ankle, I felt compelled – like I was being divinely nudged – to go help them. Throughout the process I’ve learned that stepping in as a primary caregiver can often be a very sacred experience. For me, it was about the human experience of walking along side a person during their darkest hours. Even though there have been many days that I’ve questioned where I’d find the strength and perseverance to make it through the day – it’s somehow always been there. Another incredibly positive aspect has been what I’ve learned and the amazing tribe of caregivers out there who have been transformed by their own caregiving experience and want nothing more than to help others.
What would your advice be to someone who is new to this journey? Get armed with knowledge. Get real about who you are and what you value most in your day to day life. Get connected with others who have walked or are currently walking this journey. And, last, but not least, get clear on your personal boundaries. The last one is a huge one. We’re often thrown into the role of ‘caregiver’ as a result of a crisis. Our loved one falls or has a stroke or is diagnosed with cancer or dementia, etc. and we’re flooded with emotions and adrenaline that fuels our desire for action to help in any way we can. This is a great gift, but, it’s not sustainable over the long-haul. If we jump in with both feet without having established a support network ahead of time that can fill in when we need rest – we burn out very quickly. And there’s nothing worse than experiencing caregiver burnout. It’s exhausting, depressing, anxiety producing and leads to our own serious health issues.
What’s the biggest challenge facing caregivers, today? From my experience, caregiving happens in stages and there are challenges in each stage, but the biggest challenge is not being prepared. We’re not taught (at least in the U.S.) about how to embrace – much less, face the fact that if we don’t die suddenly we’ll all eventually get sick and die. As a result, we don’t take the time to think through and plan for how we’ll manage the caregiving duties we all will eventually face in our lifetime. There is no getting around it. Unless we’re complete loners who live in the wilderness or extraordinarily wealthy and can hire a personal staff of caregivers we’ll eventually end up in the caregiver role in some way, shape or form. We also don’t think about who will care for us and the demands our caregiving needs will have one those we love. I was deeply struck by a question a dear friend of mine named George Fuller, the founder of Silver Compassion asked me: “Who in your life will change your diapers?”. That’s a profound question and speaks to the need to think ahead and actually have these types of conversations with our core people in our lives. If you don’t want a loved one changing your diapers then you better save enough money to ensure that doesn’t happen. The reality is most of us won’t be able to financially afford 24/7 professional care and someone we know and love will fill this role. Who will that be for you? Whose diapers will you agree to change?
What made you want to create Daughters Unite? What’s your vision for Daughters Unite moving forward? In June 2015, I was sitting in a continuing education seminar about elder law. At one point, the attorney who was facilitating the seminar starting talking about the fact that it’s typically the daughter who ends up in the primary caregiver role for the family. On average, the daughter is 49 years old, employed, married and, according to one Metlife study, experiences a negative inheritance of $324,000 due to giving up promotions, moving to part-time hours or leaving the workforce altogether. I was completely stunned. I had managed my brother’s care, moved my aunt and uncle across country and have aging parents who I’m certain will need my help at some point down the road. It was at that point that I decided I needed to somehow pull my fellow daughters together. Since launching Daughters Unite, I’ve now realized three very important things: 1) Daughters don’t recognize themselves as caregivers until well into the caregiving process; 2) Since they don’t initially know they’re a caregiver – they miss the tons of information and support that’s available for them as “caregivers” when they need it most; and, 3) There are way more Millennial Daughters in the role of caregiver than we knew existed. That being said, I’ve had the privilege of meeting several amazing daughters turned caregivers turned entrepreneurs who have written books about their caregiving experience, developed training programs for caregivers and/or offer caregiving coaching services. The ultimate vision is to build the Daughter Dream Team and introduce the products, programs and services these experienced Daughters have created to the Daughters who have yet to realize they either are or will be a caregiver.
It’s easy to lose our other selves when we’re caregiving. Share something about you that is unrelated to the caregiving role. I’d say my greatest passion in life is music. Beginning in my teenage years, throughout every decade so far – I’ve been singing in rock bands and writing songs. I’m actually in the studio right now working on a collection of songs that have really been my saving grace as I’ve worked through my grief over the sudden deaths of my 34 year old brother and 53 year old cousin who was a close friend of mine. I’m thrilled with how these songs are turning out from a production standpoint and can’t wait to launch the album.
Artists aren’t the only ones with creative gifts. For some it’s painting, or music. For others its making people feel comfortable or cared for. What’s your gift? I believe one of my gifts that I’ve noticed as I’ve gotten older is my ability to show up for people in their darkest hour and actually ‘stay’ with them in their sadness and grief. I’m comfortable walking with others through the sudden hospitalization or death of a loved one and helping oversee the detailed arrangements or other logistics that are needed. The ability to do this is actually an incredible gift to me.
April can be reached via:
As the Mary Chapin-Carpenter song goes, “Sometimes you’re the windshield. Sometimes you’re the bug.” While there’s simply no way to steer clear of the many challenges this caregiving journey brings, we can learn so much from them. Here are just a few things I discovered along the way.
In addition to constantly multi-tasking, you’re also dealing with a multitude of conflicting emotions. Caregiving is damn hard work, and if you don’t explode once in awhile, someone needs to take your pulse. Give yourself permission to feel what you feel, without judgement. Sit down with a cup of hot tea or a glass of wine, grab a journal, and write it out. Venting on paper offers an opportunity to safely process all that we’re going through, and the realizations that are often unearthed can be very powerful.
When the planets align and things go according to plan, that’s usually due to one person who’s willing to go the extra mile (in addition to you, of course). Maybe it’s the doctor’s receptionist who slides your dad in for an appointment on a day you can be there; or the nurse’s aide at your mom’s rehab facility who always treats her with such respect. To acknowledge such kindness, I maintain a stash of thank you cards and inexpensive gifts like pretty notepads, hand-made soaps from a local artisan, $5 gift cards from Starbucks. Small gestures like this can can have a big impact, because they’re so unexpected. The caveat is that you have to do it for yourself, as well. For me, a small reward was heading to a favorite thrift store for a $3 treasure, or 15 minutes of quiet with a good cup of coffee from my favorite cafe.
Reach out to a support group, either close to home or online. You may think you don’t need this, but the reality is that caregiving takes a village. Isolation is a very real concern that can affect your mental and physical health. These communities are a way to make friends, receive support and encouragement, and gather helpful strategies from people who are living the tough stuff every day. Many focus on special needs like caring for a loved one with dementia (check out Brenda Avadian’s site, The Caregiver’s Voice), or working daughters caring for aging parents (Liz O’Donnell of WorkingDaughter.com has a site that offers great advice and support, and a FaceBook group that offers the same.)
Accept help early on, while people are most likely to offer, even if you think everything’s under control. The reality is that the longer you go on doing it all yourself, the less people tend to believe you need assistance. Be specific. Maybe it’s asking someone to bring a meal; or having a friend sit with the family member you’re caring for, so you can take a break for a few hours. Make a list that includes daily, weekly or monthly chores that others can perform, and when someone says, “Let me know if there’s anything I can do” be ready with, “Well, actually there is. How about……” Believe me, this points out who you can count on pretty quick.
Maintaining a sense of humor while caregiving isn’t a luxury. It’s a necessity. Laughter, even the dark kind, allows your body to relax during stressful times. But, did you know it can also keep you from being crushed by emotion? It saved me countless times, especially the last day I spent with my father at the hospital, simply holding his hand. When the nurse asked if I wanted someone from the clergy to visit, I asked for a rabbi. As he entered the room, I couldn’t help thinking that he didn’t look like a member of my tribe. Reading my mind, this lovely man said, with an apologetic smile, “I’m not Jewish, but will an Episcopalian do?” In that instant, I laughed. Not a nervous titter, but a loud, life-affirming sound that provided me with what I needed most – release and relief.
I once read that, “If only” is the saddest phrase in the English language. Don’t become a prisoner of regret after a parent is gone. Be generous now with some simple, yet powerful phrases. “I love you.” Thank you. I forgive you. Please forgive me.” You would be amazed at their ability to bring about positive change in a relationship. A great book on this subject is Ira Byock’s, The Four Things That Matter Most.”
What I continue to realize is that we are all in this together, and sharing our experiences is how we begin to change things for the better. Why not take a minute and offer up some of your own hard-earned wisdom?
Are you secretly giving yourself a grade for caregiving? Feel you’re falling short? Don’t be ashamed to say so, because I get it. Growing up in my house, a grade of “C” was equivalent to an “F,” and at dinner each night, my younger siblings and I had to come up with good answers to my father’s perpetual question, “What did you do of any consequence today?”
Decades later, while caring for both my parents during the last phase of their lives, and still putting myself to Dad’s test, these are the responses I finally arrived at.
Perfect solutions don’t exist when caregiving, and what may work one day, may not work a day, a week, or a month later. Even knowing this, we often drive ourselves to exhaustion processing tons of information, and absorbing solicited and un-solicited advice while trying to honor the hopes and expectations of the parent we’re caring for. It’s inevitable that sometimes “analysis paralysis” sets in. This happens when we worry about not having all the facts, are concerned the decision may be the wrong one, or have convinced ourselves that the worst possible scenario is going to occur. What can help is learning to stop second-guessing our decisions; remembering we can only work with what we know at any given time, and making peace with the idea of “acceptable for now.”
Caregiving is a verb, and our days run on multiple To Do lists – dealing with a deeply flawed medical system, particularly where the elderly are concerned; ordering and picking up medical supplies and prescriptions; filling out insurance forms; and responding to crises we’d rarely imagined. It’s never-ending, yet caregivers often feel they should be doing more. Once in awhile, try making an “Accomplishment” list, instead. Write down all the things you manage to handle while taking care of a parent/ a spouse/ a child/ a full time job/ a home/your own needs, or any combination thereof. Even you will shake your head in disbelief at what you’re achieving under great odds.
Try not to compare your caregiving experience with others. I was speaking with someone who’d been taking care of a father with dementia for over 10 years. When I commented on how hard that must be for her, she said, almost apologetically, that her dad was in a memory care unit, so she wasn’t a twenty-four hour caregiver. The reality is that caregiving is a 24/7 job whether your parent is with you or not. You’re still the one being called at all hours when issues arise and difficult decisions must be made, so don’t ever devalue your efforts.
Often, the toughest part of caregiving is recognizing that you can’t always make things better for Mom or Dad despite your love and efforts. And sometimes, being with a parent is more important than doing for them.
Finally, forgive yourself for being irritable, resentful and sometimes wishing your caregiving responsibilities were over. It doesn’t make you a bad person. It just makes you human. The irony is that accepting this fact can release some of the unrealistic expectations and pressure we put on ourselves to try and fix everything that goes wrong.
So, for those of you who still feel the need to grade yourselves, I’ve devised a new system with caregivers in mind.
A – Accomplished
B – Big-hearted
C – Compassionate
D – Dedicated
F – Fabulous
Now – go ahead and give yourself the “F” you deserve.
I just finished reading a little book entitled, “Congratulations, by the way.”
The author, George Saunders, speaking to a graduating class, describes what he’s regretted most in his life. Turns out, it was a failure of kindness. Those moments when he hesitated to offer someone a word, a touch, or a smile to make them feel valued and understood.
I see this often, but with a twist. In caregiver communities, people reach out to each other daily with warmth and compassion, yet they don’t extend that same empathy to themselves. Instead, there is only a litany of should’s:
I should be stronger. I should be able to handle all this. I should be doing a better job.
The thing is, what you are doing is often an exhausting, all-consuming, roller-coaster ride in the dark, and there are times of questioning your sanity and the ability to continue. Yet, despite all this, you keep on going. And that needs to be honored.
So, here’s to you on Valentine’s Day. Nothing fancy. No roses or gooey sentiments. Just a good, strong, get-the-job-done cup of coffee that speaks to some of your finest qualities.
As George Saunders says, “Try to be kinder.” And I would say to caregivers everywhere, “Begin with yourself.”