An Interview With April Koontz

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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.    

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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:

FB:  https://www.facebook.com/daughtertribe/

Twitter:  https://twitter.com/DaughtersUnite

Instagram:  https://www.instagram.com/daughters_unite/

Website:  https://daughtersunite.com/

 

Speaking Up

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Awhile back I invited my writer’s group to compose a letter to people they interact with who are not caregivers themselves. To say the flood gates opened with this assignment would be an understatement.

Responses included:

The son or daughter who never calls, or who only calls to tell you about their problems. Or maybe they rarely visit, or never ask how you or your spouse is doing?

The busy sibling who has no time to help, yet is always happy to criticize your caregiving efforts.

Numerous acquaintances who use that well-worn phrase “Let me know if you need anything,” as a sign-off to every conversation, and that’s where it stops.

The well-meaning friend who comments on how worn out you look, just when you were feeling pretty good.

The doctors who act like you and your parents are working for them, and not the other way around.

It’s clear this particular prompt struck such a nerve, and in all instances the group remarked that they stifled their responses for fear of being labeled a complainer, a troublemaker, or a bitch. I get that keeping quiet can sometimes be the better plan, but, there are many instances where we’ve simply got to speak up, because remaining silent only reinforces a status quo which is hurtful to those we love, and to ourselves.

Here are a few excerpts from my own letter, written to some of the physicians involved in my parents’ care over the course of six years. This isn’t an indictment of all doctors, for some were compassionate, generous with their time, and truly seemed to understand the challenges faced by my parents, and me as their advocate. For the record, I gladly wore the labels noted above and did share a few of these comments with healthcare personnel.

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Dear Medical Professional,

Before we begin, please fill out this ten page form of very tiny type, documenting your qualifications. Already completed this for the last caregiver? Sorry, I’ll need you to do it all over again. You’ve been waiting to see me for an hour? Well, everyone knows that a 9 o’clock appointment really means 10.

Do not automatically assume that all patients in their late 80’s have no capacity to understand what you’re telling them. Also, be prepared to answer a list of questions about side effects, expectations of recovery, etc. after you propose a risky surgery or procedure. Never use the enticement, “You’re not paying for this. It’s covered by Medicare.” Where do you think Medicare gets their money?

Please refer to elderly patients as Mr. or Ms. or Mrs. and not by their first names, or as the UTI or cardiac cath in room 202. Surviving this country’s health care system thus far, entitles them to a great deal of respect, and you are treating a person, not a condition.

Stop saying, “How are we doing?” when a caregiver and her parent finally get to see you after sitting for two hours. WE are pretty damn tired of late night trips to the ER. How are you?

Don’t look at a caregiver and say, “You need to do such and such,” as if this person has been hanging out on the couch eating bonbons and watching soap operas, all this time. Instead, look her in the eye and ask, “And how are you holding up?”

The next time a nurse brings an elderly patient the two Tylenol you prescribed for pain due to a pelvic fracture, don’t get all huffy when the daughter/caregiver raises hell and demands to speak with another hospitalist. Prescribing opiates may not be your first choice, so do your research, or call in a pain management specialist. Just don’t minimize that patient’s distress.

To close, I get that you work long and demanding hours. As a caregiver, so do I. Maybe we can work together as a team to change things in this broken healthcare system of ours. Please accept these suggestions as a token of my commitment to this worthy goal. The next batch of suggestions will be accompanied by a bill for consulting services rendered. Payment will be due within 30 days, and FYI, I don’t accept insurance.

Respectfully,

Judith Henry

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Readers, if you’re game to give this exercise a try, pen your own letter to someone, and look closely at what you’ve written. Like the members in our writing group, you may feel a sense of relief just getting these unspoken words out of your head and onto paper. But think for a minute – is there a way to present your thoughts constructively to the person you’re writing to?  For example, instead of automatically saying, “I’m fine” to the adult kid who calls with a cursory “how are you?” be honest. To the physician who barrels in with a treatment or surgery, assuming your parent (or you) will acquiesce quietly, explain you have a list of questions prepared to be answered first.  When someone tells you, “Let me know if I can do anything,” don’t just say ok. Tell them what they can do to help, and be specific.

You never know. Your words may just start changing things for the better.

 

Are You Staying Hydrated?

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For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.

So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.

One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.

The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.

Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.

Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.

Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.

Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.

Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.

Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…

And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.

As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.

Photo from gratisography.com