In the closing paragraph of The Dutiful Daughter’s Guide to Caregiving, I say, “…this is what I know to be true. I really am okay. And you will be, too.”

Since writing the book, I’ve been spending more time exploring what “I’m okay” really means. Well, actually, what “I’m better than okay” really means. A lot of it focuses on rediscovering who I am after releasing long-held identities as a caregiver, and (yes, I’m that old) as an employee. Big stuff. BIG stuff.

Of course, this will be different for everyone, but, just like caregiving, there are always common threads that run through the experience. And also just like caregiving, this is a journey made richer by traveling with friends like you who find yourselves on the same road.

So, here’s the plan. We’re going to do some exploring, tap into our creative side, and gather up big handfuls of joy. Along the way, I’ll share my own low-budget journey of self-discovery, art and writing prompts that go deep, inspiring conversations with women just like us, and tons more goodness.

Of course, there’ll still be lots of support and encouragement for those still walking the caregiver path. You are, and always will be, my people. Just think of this as a mini-retreat where we open ourselves up to possibility, and embrace the potential for what comes next.

“Why I Wake Early”

“Why I Wake Early 
Hello, sun in my face.
Hello, you who made the morning
and spread it over the fields
and into the faces of the tulips
and the nodding morning glories,
and into the windows of, even, the
miserable and the crotchety –

best preacher that ever was,
dear star, that just happens
to be where you are in the universe
to keep us from ever-darkness,
to ease us with warm touching,
to hold us in the great hands of light –
good morning, good morning, good morning.

Watch, now, how I start the day
in happiness, in kindness.”
― Mary Oliver

Let’s Talk Tough Conversations

Caregiving is filled with difficult discussions and End-of-Life talks are particularly hard, uncomfortable, and can even feel insensitive, at times. The key, though, lies in reframing these conversations as acts of love that satisfy a dual need for both you and the person you’re caring for. Not only does your parent/grandparent/spouse/partner have the right to be heard and respected for their choices, but this kind of validation can also bring them comfort and piece of mind. This is the very same thing it can do for you as it removes the burden of trying to guess what their wishes are in a time of crisis.

A good place to begin is with talking to your adult family member about the kind of medical care they want and don’t want as they grow older, become ill, or if a catastrophic health event were to occur. Some questions might focus on their priorities such as wanting comfort care over aggressive treatments; preferring hospice care at home, if possible, over spending final days in a hospital; or embracing quality of life over quantity.

These conversations are deeply rooted in a person’s values, beliefs and what is most important to them, and even if your family member is in the early stages of a dementia diagnosis, he or she may still have a strong desire to make their preferences known.

Talking about it isn’t enough, though. Their wishes must be outlined in a legal document called a Living Will, also known as an Advance Directive. The Advanced Directive spells out instructions regarding preferred medical care if a person is unable to communicate this information on their own.

There’s another necessary legal document that names a Healthcare Surrogate, aka Healthcare Proxy, or Healthcare Power of Attorney. This person becomes the voice of the patient if they’re unable to speak, so this needs to be someone who the patient trusts to do their best in terms of ensuring that medical personnel carry out their wishes. It’s a hugely important role, and one that not just anyone can fulfill. In fact, when I was going down the list of potential prospects for me personally, I ended up choosing my ex-husband, who I will say, was very enthusiastic – almost too much so!

Finally, another critical health-related document to discuss early on is the Do Not Resuscitate form, or DNR, a formal doctor’s order that must be completed and signed by a physician and your family member. Essentially, it states that CPR should not be performed if they stop breathing or their heart stops beating.

The reason this form is so critical has to do with the effectiveness of CPR procedures, which include mouth-to-mouth resuscitation, but also electric shock, inserting a tube into a patient’s airway, and even open-chest heart massage. If someone is already in a fragile state, CPR may leave him or her in profoundly worse condition than before. It’s a very personal choice but one that needs to be made ahead of time. For the record, during the time I helped care for my mom, I carried this document with me in my Caregiver Purse, and always made a point of letting hospital personnel know about it. Sometimes, I felt like the Angel of Doom, but making sure my mother’s wishes were honored was always what guided me.

So what should happen next? Make copies like crazy and share t with all healthcare personnel involved in your family member’s care. Keep a set in the person’s home. If they live in a residential care community, make sure the administration has the documents, and always keep copies that you can put your hands on quickly. Also, give to the hospital and/or ER whenever your loved one is admitted. Don’t assume that if you gave it to them once, it will be enough. With the DNR in particular, make sure it’s in a place that can be clearly seen in your family member’s home or room.

Two good websites for more guidance on Living Wills include: AgingWithDignity.org, which offers a form called 5 Wishes, a type of Living Will that addresses emotional, spiritual, and personal needs in addition to the medical side of things. The other site is TheConversationProject.org, which actually offers conversation-starter kits to help individuals and families feel more comfortable when talking about end-of-life choices.

There is nothing easy about having these kinds of talks, which can often be very emotional experiences. And it’s ok to say that it makes you uncomfortable, and you’re unsure how to begin. But, as a family caregiver, having the courage to take the lead on this can actually offer an opportunity to create an even deeper relationship with the person you’re caring for. Who wouldn’t want that?

Note: Another important conversation has to do with seeking a loved one’s input regarding  their funeral or memorial service. Again, it may seem like a subject you shouldn’t bring up, but in reality it’s a way of showing your respect by wanting to honor their final wishes. For more info, see this post (a reader favorite) about planning my mom’s funeral with Barbra Streisand’s help.

 

Covering My Bases Since 1959

A moment from the past. Is it any wonder that caring for my parents in their later years, and writing a book about it, was the natural thing to do? Many thanks to the Florida School System for eventually teaching me the difference between “to,” “too,” and “two.”

What Makes Herbs & People Grow

You can take the girl out of caregiving, but you can’t take caregiving out of the girl. Right now, there are nine different herbs planted in pots on my back porch. They have names like Rosy, Cilia, and Dilly – all decidedly female, even Reggie One and Reggie Two, the oreganos. I talk to these gal pals throughout the day, giving them reassuring little leaf rubs, keeping them hydrated, looking out for leaf blight, and offering lots of reassurance. This, of course, could be considered either crazy or endearing, depending on whether you embrace a bit of woo-woo in your life. The thing is, they look like they’re smiling, and that delights me.  This, coming from the person who, years ago, told new plants, “I hope you stick around, but there are plenty more where you came from.”

Digging deeper, I’m figuring out this goodness stems from being open to embracing new ideas and practices that inspire and sustain me. Exactly what I want for YOU, beginning with this essential truth. Whether currently a caregiver or a perennial – you, me, and the thriving plants on my deck have something in common. Like them, we can grow. We can bloom. We can flourish. What it takes is our encouragement, our attention, and our kindness to each other.

————–

What or who inspires you?

Is there a creative activity you’d like to try out, or get back into?

What is your favorite thing to do when you have a little time?

(If it’s “sleep,” I suspect you’re in caregiver mode.)

 

From Caregiver to Perennial

Welcome! If you’re visiting my little patch of virtual soil, it’s probably safe to say that you’re a Caregiver. And because your identity is securely tethered to that role, it’s hard to keep the parts of yourself alive that have nothing to do with caregiving. You know – the painter, the quilter, the photographer, the writer, the crafter, the gardener – to name a few.

Well, now we’re going to explore a second possibility, as well – that you’ve come through caregiving, or another kind of soul-changing experience, and are wondering who you are or who you want to be in this new life of yours. You are what I call a Perennial. Someone strong enough to survive the winters of your life, and blossom with each new spring and summer, and in the fall – ready to reflect on the past and sow your hopes for the future.

No matter which of these descriptions resonate with your amazing self, you’ve come to the right place.

Here’s the plan. We’re going to do some exploring, tap into our creative side, and gather up big handfuls of joy. Along the way, I’ll share my own low-budget journey of self-discovery, art and writing prompts that go deep, inspiring conversations with women just like us, and tons more goodness.

Of course, there will always be lots of support and encouragement for those walking the caregiver path, because nothing will ever change the fact that You. Are. My. People. Just think of this as a mini-retreat where we open ourselves up to possibility, and embrace the potential of what comes next.

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Still not sure? Here’s a little Q & A to help you decide.

Will it be mouthy and good-humored? Uh, hello, it’s me.

Open and honest? Still me.

Positive and hopeful? Yes, more please.

Fun, yet practical? As a bohemian soul with a bean-counter’s brain, count on it.

 

YOU’RE ALLOWED TO FEEL RELIEF

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”

You Might Be a Caregiver If…

As most of you know, every month, I am privileged to facilitate a writer’s group specifically for caregivers. One of our members, Terry, wrote a piece that goes to straight to the heart of what it’s like to be on this journey, and she has graciously allowed me to share it with you.


You might be a caregiver if:

You experience a slight increase in your heart rate when you recognize the caller id is your loved one’s assisted living facility/nursing home/rehabilitation center

You quickly dart your eyes to your spouse and wordless communication this is ‘one of those’ calls before the caller can complete one of the following phrases: ‘unwitnessed fall’, ‘EMS is on route’, ‘being transported to the Emergency Room

You remind the nurse to be sure your loved one is sent with a jacket even though you know that won’t be enough to keep them warm once they arrive

You can put together a bag of essential items for an extended ER visit in less than five minutes

You can quickly review your planned activities and begin cancelling/postponing them on your way out the door

You have your driver’s license out of your wallet as you walk into the ER lobby

You have a prepared speech for the ER staff (preferred arm to use for a blood draw, needs extra blankets, list of artificial joints/pacemaker/etc.)

You can recite their list of prescription medications, drug allergies and reactions, date of last visit to the ER

You already have a Health Care Surrogate document on file at the hospital

You know which tests they are going to perform before the doctor begins placing the orders

You know you won’t be leaving for at least four hours

You know where every bathroom is in the ER area

You have spent at least two birthdays/anniversaries/holidays in the ER or hospital with a loved one

You have postponed, cancelled or returned early from a vacation (or simply skipped planning one)

You would do it all again, without hesitation, if needed

To caretakers everywhere, keep your chin up and your sense of humor handy. You are very special people and the best advocates for your loved ones. Remember to take care of yourself too.

I had no idea when I wrote this story that my role as caregiver would end eight days later. My mom had a second fall on December 13th and broke her hip. She was transferred to the Sun City Hospice House so they could help manage the increased pain. Once they administered the pain medication, she finally relaxed and went to sleep. She never woke up again and she died peacefully on December 15th with me, my husband, Paul, my cousin, John and his wife, Mary by her side.

———————-

Letting Go & Holding On

During six years as a caregiver for my mother and father, the key ring I carried would no doubt have made a janitor swoon. It held keys to our family home where my father still lived, his old Camry, my mother’s small duplex apartment, her little Hyundai, and a safe deposit key in both their names. My keys included a few for the house, my Camry, a PO box, and several for the business I’d been employed by for over 20 years. All told, about 15 keys dangled from multiple rings attached to a homely metal snap clip from Home Depot. Fashion be damned.

Then my father died. The house was sold, and the car was gifted to Mimi, his amazing home health aide, with our deepest gratitude. After my mother died in 2013, the keys for the house she moved to after my dad’s death were returned to the landlord, my brother got her car, and the safety deposit box, containing only a copy of her Last Will and Testament, was closed out. At that point, it struck me that the keys I now carried were only my own. And as often happens when reflecting on the joys and hardships of caring for those we love, I felt both lighter and heavier at the same time.

Out of that experience, came a book and workshops focused on helping other adult children feel supported and understood both during and after their caregiving journey. It was a way to grieve the loss of my mom and dad, while holding them close through the stories I shared.

Fast forward to the end of last year when, after much upheaval, I left the job that no longer sustained me to focus on writing and speaking full time. Walking out of the office and turning over the keys to my replacement, I thought of my parents, and hoped they would approve.

So, here I am once again, holding that same shabby key ring, but now it represents a new life filled with promise and possibility. No more steady paycheck, or health insurance, or a presumably “secure” future, but there is a lightness to my spirit that wasn’t there before.

“LET GO” has become my mantra for 2018, starting with the long-held identity of “employee;” but come what may in the years ahead, a daughter I will always be.

 

This perfect photo by Ylanite Koppens from Pexels