Want to spread some joy? Then check out THE COMPLIMENT PROJECT! Just download the printouts and post them around town! It could be a fun Saturday activity to do with your children or grandchildren. Just imagine the giggles you'll share as you covertly tack them up on the bulletin boards at the post office, supermarket and/or senior center!
I am a firm believer in not shielding children from life when life’s events are age appropriate for them to be exposed. You may not want to over-expose them to certain things, but getting a little bit wet from reality can be a very healthy thing. It is with that belief that I included my three school-aged children in the care of my parents.
Children of any age are highly intuitive and pick up on our stress and worry. Often, they are also experiencing similar stress and worries to our own when someone close to them, like a grandparent, is ill.
I like to use the muted television example to explain my reasoning for inclusion and transparency. My grandfather would watch movies when I was visiting his house. I was very young, and the movies that were on should not really have been on in front of young children. My grandfather knew this so he would mute the parts that I shouldn’t hear. Well, I could tell that something was coming up based on the crescendo of dialogue and when that mute-worthy part would come on, I would imagine what the actors were saying. I guarantee that my imagined dialogue was worse than what actually being spoken. And because I imagined the dialogue, I believe it took hold in my brain in a much deeper way than if I never had to think about it. If the words went in and out of my head and that-was-that, I believe I would never have had to think about them. Instead, those movie scenes and imagined lines are written inside my memory with indelible ink.
And so it is with shielding your child from the decline of someone they love, be it a parent, grandparent, relative or friend. They know it’s happening even if you are very careful to shield them from the situation at hand. Allow the situation to exist and be experienced, as a family.
My son, when in 8th grade, turned to me one day, when my Dad was in the late stages of Alzheimer’s and said, “Mom, I worry about Pop-Pop.” Hellooooo…. What was I doing? Worrying about my Dad. I answered his statement with the truth that I too worried about Pop-pop. My son was relieved to know that he was not the only one who felt this way. Instead of feeling alone, he felt normal. And normal is a good feeling when everything around us is abnormal. Your children see it, hear it, and feel it. Don’t shield them from it. In sharing, you will gain strength from one another. I promise and swear.
During my time in Caregiving-land, I saw adults who included their young children in the care of an ailing grandparent and ultimately, they were better equipped to handle the passing of that grandparent than the adult grandchildren who were never asked to participate in the care of a grandparent. The uninvolved were the members of the family who sobbed endlessly at the wake and funeral because they had missed out on the opportunity to have connections that now, would never be able to happen.
Don’t deny anyone the chance to connect with the person for whom you care.
If you don’t already, consider sharing just a little bit more with your children regarding the health of your caree. Create openings for a conversation about feelings and questions. Allow them to remove the fears they carry around with the safety of your understanding. Car rides are incredible for this type of conversation because you are not looking into one another’s eyes and for some reason, children often respond to this by over-sharing. (Of course, the trick is to make sure their phones are not in their hands distracting them!)
Give it a whirl and let me know what happens!
If you’d like to hear more about this topic, you can go HERE to listen to a conversation Denise M. Brown and I had about including your children in caregiving.
If you would like a list of activities your child can do when they visit with your caree, click HERE for a printable PDF filled with actionable ideas. Or, read the previous blog post, "ALL HANDS ON DECK! Why Including Your Children in the Care of Your Parent is Healthy".
Often well-intentioned parents attempt to shield their children from the uncomfortable face of illness.
If you've heard my podcast with Denise M. Brown (YOU CAN LISTEN HERE), you heard a few ways to include simple activities that include your school-aged children in the care of your parent or aging relative. I've got more to share with you... Have a look and see if your next visit can't be a touch more fun for everyone!
3, 2, 1 Action! Interview and record stories and create a living time capsule. Prepare questions and bring along memorabilia or photos to spark the stories.
Memory Jar At home, brainstorm with your child about things they want to know about their grandparent. Put the questions on pieces of paper that go into a jar. Bring the jar along on visits. Even if the grandparent has dementia, recalling the good old days is often easier than recalling what they had for breakfast.
Play Ball Well, not literally. Is your teen into a sport? Visiting grandpa to watch the big game on television is a way to connect in a less pressure filled way than if they had to sit face to face and come up with conversation. Don’t forget the snacks!
Video Calls Is there a loved one who lives far away? Arrange a video chat for when you will be visiting. Put your child in charge of the technology.
Food Fridays Bring an exotic fruit or vegetable for your child to introduce and discover with their grandparent.
Scented Sundays Bring in items with different scents like soap, candles, essential oils, and foods and with eyes closed have everyone name the smell. It’s trickier to do than you think.
Spa Saturdays Have your teen pamper grandma with a manicure or grandpa with a shoulder massage. These activities are warm and loving ways to connect and extend the healing power of touch.
Pet Therapy Have a calm family pet? Bring them along for the visit. Having a pet to stroke is proven to calm individuals who have a variety of issues.
Strike Up the Band Especially fun for younger children, bring handheld instruments like shakers and tambourines to play. Sing and play along to old favorite tunes that you have stored on your smartphone.
Whee For Wii Many care facilities have a Wii game system. Ask if you can access it and play Wii Bowling, Wii Sports or Just Dance. Or, if a television is in the room (and space is available) your home system could be brought in for the day.
Simon Says This is a fun game to get a grandparent moving in the comfort and safety of their chair. Have everyone take turns challenging one another to reach for the sky, flap their arms like a bird, swim in the sea, run in place. You get the gist.
Take A Hike Well, how about just a stroll around the inside or outside of the home. You could also drive to a nearby park and cruise around the lake or down a smoothly paved path. Even sitting with your parent on a bench while you enjoy watching your children play on the swings can be a win for the whole crowd.
The Times They Are A-Changing Decorate a grandparent’s assisted living apartment with holiday decorations. Your children can pre-create items for grandma and proudly present them and tape them up all over the place.
Picasso, Is That You? Bring supplies and a drop cloth and create just-for-fun mini arts and crafts together.
Offer the choice between two activities and let the grandparent choose which activity they would like to do to give them a sense of empowerment.
Go with the flow – if the grandparent wants to stop mid-activity, let them.
Let go of expectations. Everyone has a bad day, and you can’t predict what you’ll walk into at your visit.
Have fun! JOY IS NOT AGE DEPENDENT. And, it’s in the giving that we end up receiving. Experiencing this at an early age will carry across a lifetime.
OF NOTE FOR TEENS:
Your teenager can expand their experience to others within the assisted living community and could lead activities or games with the permission of the activity director. Many schools or civic organizations your teen may be involved in may count this as volunteer time toward required public service hours. And while you ideally want your teen to do things out of the goodness of their hearts, sometimes you need to lobby to the goodness of their college resumes.
And do share in the comments if you have any activities to share with THE LONGEST DANCE community!
First, can we just get out of the way how cute this couple is? This is who and where I want to be when I grow up.
Today's post isn't so much about the act of caregiving but the actions of caregiving. I keep coming back to the idea in my previous post about just being.
As family caregivers there is so much to be doing. Noticing health changes, managing medications, coordinating doctor's visits, handling unexpected issues (wait - you know the list, why am I reminding you of everything you do during the moment you've just taken for yourself to read this post?!).
We are always doing, doing, doing. When do we ever take the time to just be?
When I was in the middle of caregiving there was never time to think, reflect, rest or dream. If I ever did find myself thinking, I was thinking about being anywhere but where I was.
I keep thinking about the act of just being in my life. I can hear you, "Sure, Colleen, it's easy for you to just 'be' now that you aren't actively caregiving." And I wouldn't blame you. I would have said the same thing when I was actively caregiving. But just look how happy this couple is just doing nothing. I hear it coming... "But, Colleen, they aren't caregivers." Maybe they are. Maybe he cares for her. Maybe, cropped out of the photo, a sink full of dirty dishes sits. Everybody always has something else they could be doing.
What if, the next time the need to do something arrives, you decide to do the opposite and just sit and do nothing. Try it for just 5-minutes the next time you are in the doctor's waiting room with your caree or alone at your desk. Don' t pick up a magazine or your look at your phone. Build up to a half an hour or maybe more. Try it for a week, a month or season. I promise that all you need to get done will get done. But the doing of those things will feel different after your practice of being.
At the end of the day, I never ever miss how sparkly clean I was able to make my dad's wheelchair. But I do miss the moments we spent outside just being together.
And as I look at the couple in this photo, I hope that with my continued practice that I will one day be sitting with my sweetie, just being. Being happy. Being loved. Being in love. Being together.
Gotta go switch the laundry now.
Oh wait, no I don't. It can wait 5-minutes!
I used to sit outside with my Dad under a wooden gazebo nestled on the outskirt of the woods, in what would be the final summer and fall of his life. It was an "activity" for us. He was now a man in a wheelchair and the trip outside was a way for us to escape to a quiet, solitary space away from the bustle of the other residents in the "health center" as the nursing home referred to itself as.
Previously, pre-Alzheimer's and debilitating Parkinson's diagnosis, Dad loved nature. He was an ardent Arbor Day supporter, perpetual National Geographic subscriber, and visitor of America's National Parks for family vacations. Being outside was like meditation for him. I believe he owned every nature book ever sold by Reader's Digest and Time-Life Books.
There should be no surprise then that on our "trips" down the hall, in and out of the elevator, down the paved driveway to the yard and over to the wooden gazebo nestled on the outskirt of the woods led him to a contemplative place of peace and calm.
We would settle in and I would blather on filling the airwaves around us with talk of whatever things were going on with my children or verbally poke at him for thoughts on what he was thinking. Eventually, I'd run out of hot air and fall silent. And it was in this silence that the magical moments appeared.
To fill you in, after a certain point, being able to determine Dad's eyesight or hearing was a wishy-washy act of prediction. He had long ago stopped being a reliable patient; falling asleep in the darkened room of the optometrist and no longer receiving hearing check-ups, presumably due to all the new check-ups he'd now receive post-pneumonia. So it was a little bit astounding to me when, on many afternoons outside, inside the wooden gazebo nestled on the outskirt of the woods, he would say, "Shh, do you hear that?" to the cars that were acres away buzzing across the highway below the mountain. Other times he would say, "Look! Look! Do you see that deer over there?" After thinking he imagined the deer, my eyes would adjust to the dappled light within the woods, and sure enough, there was a deer.
In being quietly present with my Dad, he was able to settle into a place of peace. That peace allowed him to engage his senses in the ways similar to how meditation makes one more aware of their body. When everything was quiet, calm and safe, he revealed to me a present in being present. It would be in these moments that he would articulate that he was happy, that he loved me. These moments did not come as frequently outside the cocoon-like space of the gazebo, and I believe they came because of the magical nature that nature creates when we are truly present within its infinite beauty. A beauty that speaks to us in whispers but can be heard loud and clear.
I wish for more gazebo moments with him, but they will never return. I also wish I had created more of those moments, instead of filling so many visits with a buffer of busyness in tending to this thing or that thing. Part of my "doing" was a way to look away from the reality of the changes his decline brought to us each week.
In writing this post today, I sit alongside my own patch of woods on the outskirt of my home. I hear the cars buzzing across the road an acre from my house, the birds chorusing in the air, the hiss of cicadas in the trees and see the chair he once sat in, happily, in nature, next to me.
My ask of you is this:
Today, if you are able, create a moment of un-doing. Of quiet and calm. See what comes to the surface of the silence. It might be listening to an album they love or sitting on the couch holding hands.
The expression, "It's good to be alive" isn't "It's good to do alive." Try being instead of doing. And let me know what you find.
No duh, right?
"Love yourself as well" is not meant to convey "Love yourself too". It is written with the intention that you love yourself as well as you love the person for whom you care. Think about that. How often is your caree on your mind? Constantly, right? Even when you are doing something that is not directly related to them, they are in your thoughts. Imagine if you flipped this reality and in place of your caree, your thoughts went to yourself.
Let me give you an example. So, you are in the middle of feeding lunch to your caree. Normally your thoughts are focused on chopping the food, making sure they aren't pocketing the food in their cheeks, adjusting the portions so they are not overwhelmed, and on and on. What if, in between one of those thoughts, you added one about yourself. Like... What music could I play right now that would make me happy? Or...Hmmm, tomorrow during our meal time I am going begin to have a green juice at the same time to help pump up my immune system.
Where I am going here is that you can care about them and care about you. Be as judicious with scheduling your own doctor's appointments as you are with scheduling theirs. Read up on how to relieve caregiver stress as often as you read up on their illness. Schedule meaningful interactions with friends as frequently as you schedule time for their enriching activities.
It's the one for me, one for you idea. For each nice thing you do for them, do something as nice for you.
It's not an easy metal switch to make. There is the guilt to hurdle over, the conditioned thought patterns to sweep away and the habit of putting yourself on the bottom of the list that you'll need to eradicate. But I dare you to do it for just one day. Just one. Then build up from there.
Love yourself as well as you love them.
And when you are taking care of yourself and allow pleasure to resurface in your daily life, you will be able to love them as well as you are able.
This is the story of the peony (caregiving) and the ant (the caregiver):
The peony flower emerged from its greenery first as a tiny bud and then, slowly, into a magnificent bloom. The ant walked up along the stem of the peony and across the backside of the bloom until it came to the surface of the flower. Diligently making it's way to the center, the ant spent the afternoon busily traversing the surface area focused solely on the bloom's stigma. The ant's field of vision was honed so closely to the center of the flower that it could no longer see the bloom. The ant made the journey each day to the center of the flower and stopped only once the final petals had fallen from the stem back to the Earth at the end of the flower's blooming season. The end.
The explanation: Something about seeing this lone ant on a peony in my garden made me think of my life as a caregiver.
In retrospect, I understand that caregiving was a bloom that lasted for but a season of my life. I was the little worker ant so focused on the center of the experience and the disease process (the stigma, literally and figuratively) that I was unable to see the fuller bloom that I was living within. Day-to-day tasks and worries eclipsed my ability to have a full perspective of how and where I was living. In the midst of caregiving, I could never see the garden around me. I could also not understand how fully caregiving was changing me until after my season as a caregiver had passed. The experience was a rich and lush and organic ever changing moment that was steadily growing and blooming following nature's sole intention of dying. Regardless of how diligently I worked away as the busy little caregiver, nothing would save my flower (my father) from dying.
As you are busily tending to your caregiving tasks, do not forget to acknowledge the garden in which you stand. Caregiving is like a flower whose beauty is designed to fade away petal by petal. Part of the flower's beauty is in its temporary existence. A beauty savored in knowing it is not forever.
You will not be a caregiver forever. This moment of your life will not always be in bloom. That can be good news on the difficult days and difficult news on the good days. Keep your focus on the bigger picture and enjoy the entire garden that you tend and be able to look back on this season with few regrets. In living fully, you will be open to the beauty.
I woke up this morning burning with a determination to kick some butt. (I currently have three teenagers, so it may not have been my butt that I wanted to kick, wink-wink.) I set off to tackle my regular morning tasks and then felt the urge to get my exercise out of the way and off my ever-present to-do list. Good music and the feeling I could do anything fueled me to turn the music up louder and ride the bike longer. The question "How was I exercising?" popped into my head. I hated, maybe even hate, exercise.
It takes up time.
It requires a shower immediately after.
It is work.
With exercise endorphins ricocheting across my brain, I began hallucinating and envisioned myself standing with arms raised in a workout tee-shirt that read: I CAN DO EVERYTHING! as I led the publicity campaign for the Exerciser Underachievers Club of America that I was simultaneously creating mid-ride. Noticing I was delusional; I snapped into reality realizing the exercise tee-shirt would need to read I DID EVERYTHING!
By no means a braggart, this tee-shirt would appear as a highly unusual wardrobe choice to those who know me. No matter. I needed to understand what allowed me to now be an "exercise person" and the answer was clear. I was a former caregiver, and I felt there was nothing that I now couldn't do. I knew I did everything I could do at the time. But appreciating how my time caregiving informs how I structure my (calmer) life now, I had to realize that I DID EVERYTHING. This is not to say there will not be intense times of caregiving ahead but for now most things in my life seem so simple compared to that hectic time of my life. Getting on a bike was somehow now a "nothing" for me to do. I had never stretched myself (and my emotional muscles) further than when caregiving. Surely my leg and heart muscles could handle a bike ride.
I believe the simplicity that I feel post-caregiving comes from the removal of life and death decisions. When caregiving, even the seemingly insignificant choice of putting a throw rug on the floor can mean the difference between a broken hip (or worse) to the person for whom we care. There are cocktails of medications that get mixed by different doctors and new side effects to catch. There comes a time when acknowledging that driving is no longer an option for our loved one - which is a life and death matter for themselves and others. The list goes on and on.
I write this post today to let you know that if you are currently caregiving, you are building up stamina for handling extremes. You are climbing a mountain shrouded in clouds, and are unable see the peak. Seeing the peak would allow you to know how much further you have to continue to climb. (And this is why I urge all caregivers to exercise daily to keep their strength up to best handle this "journey without an end date" that caregiving is.) Only upon reaching the end of your hike are you able to look down and see just how high you've climbed. Had I been able to see how high the top of my caregiving mountain was, I would have been frozen in fear and never been able to take the first step.
Each event, hospital visit, bout of the flu, and new medication mishap enabled me to handle the next issue that would inevitably appear. Like beginning to exercise, when the first mile feels like ten, until slowly through practice, ten miles is your new daily routine. It's a slow build up when you begin to care for someone. As their needs increase so does your ability to meet those needs.
The strength, both emotional and physical that I gained from caregiving now enables me to bike half-marathons each day (okay, okay, nearly each day). I am stunned each time that I do this. Just as I am stunned in looking back at the heights I climbed when I scaled Caregiver's Mountain.
Whichever part of Caregiver's Mountain you are on, know that I am cheering for you, and I'd love a postcard from your peak. If I could do it, so can you!
You know the expression, "If I didn't see it, I wouldn't believe it"? I feel that way about gratitude. It seems as if all over social media and in every inspirational speech gratitude is mentioned. It's like "Gluten Free" - it's seemingly everywhere and everyone is on the new gratitude diet.
At a certain point, curiosity got the better of me, and I tried it. If so many people were talking about how transformational gratitude was, there had to be something to it. I tried it and have never looked back. But, it wasn't easy.
First, there was getting into the habit of stopping to acknowledge and write down the small to large things that I was thankful for in my life. I had to add being grateful to my to do list. It seemed strange to see a reminder to do something that I probably should've been doing without thinking. The reminder made me feel a bit like an ingrate. But I persevered.
Stopping for as little as 60 seconds to reflect on what good things were in my life honestly felt magical because it was changing the way I was seeing. It was as if I was looking back into the previous 24-hours and picking the most beautiful flowers from the field of my day. Day after day of adding to my gratitude journal I was growing a full-size garden of lovely things that I most likely would never remember if I hadn't written them down. Day after day I was beginning to recognize, in the moment, things that were causing my heart to swell with the feeling of being blessed for having x, y, or z moment happening. My relationship to my life was deepening. I was moving away from going through the motions of living to feeling life happen to me in real time. Practicing gratitude was allowing me to be in the moment. It was an unexpected outcome that I am, well, grateful for cultivating.
I know how much happens during a caregiving day. On the busiest days there literally isn't time to think, let alone think of what you can add to a gratitude list. But what if you dared yourself to try it, even to find one thing and simply think of it. Not write a list of five things but think of just one thing. One thing in your day that you saw, did or felt that brought you a smile. A robin on a tree branch, a kind word from a stranger, a peaceful moment with the person for whom you care. Nothing complicated, something simple.
If I didn't try it myself and see a transformation in my perception of life around me, I would not be sharing this suggestion.
Feel free to share one thing you for which you are grateful. I'll go first!
If I ever heard this saying pointed toward me while I was actively caregiving, I may have surely rolled my eyes and thought, “Nice try” about whoever was delivering the statement. After caregiving, however, I love the way this succinctly sums up the considerable change being a caregiver has made in my life and the lives of other caregivers who have shared their stories with me.
Retrospectively, during caregiving, the check boxes that I ticked off were never on my original to-do list. The accomplishments achieved were not parts of my life goals. The lessons learned were not from classes I volunteered to take.
I would admit during caregiving that I knew what I wanted in my life. Not being able to live the life I thought I wanted was cause for misery. Because the life I thought I knew I wanted was not the life I was living, I was unable simply to be there within the moment(s) before me. I didn’t want to live a life I didn’t want to live.
Think about your day. Do you really want to be there giving incontinence care? Are you really able to Lean In, Sheryl Sandberg-style, to applying the rash ointment and give it all you’ve got? Can you honestly say you once dreamed of this moment and are in ecstasy that it is actually, finally here?
I hear you laughing. (But if you aren’t and I’ve just described you to a T, please email me because I would like to met you. Sincerely.)
There are just some parts to caregiving that prevent us from hanging up our proverbial shingle and printing business cards that say, “Hello, I am a caregiver.” It is because, often, this new course our of life is not our dream job and so we can easily overlook that it is, in fact, a job.
Deep Dark Secret Time: I was so in denial of being in my not-dream job, that even at my most stressed, I never thought to Google for caregiver support. Why? I could not attach my role to my reality. I didn’t want to be there with my fingers loaded up with adult diaper rash cream so why would I want to admit to myself that yes, I was living my not-dream life? There was no banner to wave, no custom tee-shirt to wear, no bumper sticker to slap on the back of my car. If I had to make the banner, tee or sticker, they would have read: “THIS IS NOT MY REAL LIFE” or “YOU DON’T WANT TO KNOW WHAT I SAW TODAY” or “SHOT NERVES, DO NOT UPSET”.
So with no identification to my job (Wait, if something is 24-hours a day, does it cease to be your job and become your LIFE? Sure. Let me begin again.)
So with no identification to my life, I spent time denying my life. I would check off, accomplish and learn so much but remain unable to glean any of it for my resume.
Until… I realized well after-the-fact that after a decade of caregiving, I was a caregiver. On a deep level, I could acknowledge that the culmination of how I grew up and what I believed in allowed me to be there to do the work, to show up, and on a subconscious level Lean In to tasks that were not my part of my dream job but a part of me. I was caring for those who cared for me. I was caring parents who showed me every day through their own civic commitments how to care for others who could no longer care for themselves. I was doing what I was raised to do, not by mandate, gender, or birth order but by the living example from each of my parents that I witnessed every day growing up in their home. I was now doing my life’s work, not so dissimilar to their work of caring for others. The threads of their lives were fully woven into mine. We were part of the same cloth. Hellooooo A-ha Moment!
Hello, to my new life as a Certified Caregiving Consultant.
Hello, to my old life in the world of caregiving.
Hello, to my life.
Please share any moments you may have experienced that caused you to understand that even in the midst of where you thought you didn’t want to be, you were actually right where you needed to be.
Turn your day around with these 9 TO FINE speedy methods to perk yourself back up:
1. Say "Hello!" to a person, in person (not from your phone). See a friend for a walk around the park or a cup a tea, call your significant other and ask them on a date.
2. Perform a random act of kindness. Doing good feels good.
3. Stand there like Wonder Woman. Power posing boosts confidence and can allow you to feel more in-control.
4. Leave the scene. Signal to your brain that the cycle of ick is not going to continue by tricking it with a change of scenery, be it a different room, taking a walk, or going for a drive.
5. Forgive yourself. It's okay to let it go especially since what you are beating yourself up over did not cause the end of the world.
6. Make a plan, Stan. Dump the worries of your mind into a list and prioritize. Your buzzing brain will think it's been taken to the spa.
7. Be good to yourself. You can't pour from an empty vessel. Fill yourself up with whatever makes you a happier human.
8. Hey, Mr. DJ! Play your favorite song. Sneak on your headphones and treat yourself to a quickie concert.
9. Reach out and touch someone. Hug someone you love. Pet an animal. Touch has been scientifically proven to lower blood pressure, alleviate fear, boost oxytocin and serotonin levels, strengthen the immune system, balance the nervous system and it just plain feels good.
And, when things aren't going your way, feeling good is what you are after!
Share if you dare, what works for you, below....
I am going to play my Jersey Girl card but believe me, no one is more surprised than myself to be posting this video of..... yes, you know whose name I am going to say... Bruce Springsteen. I have heard him describe this song as one about marriage, and certainly it is perfect for that however in hearing it tonight, I am thinking it is also perfect in the picture of caring for a parent or family member. There is certainly something in the pace of the song that seems to mirror the tone of caregiving in its slowest moments. The moments when quiet reflection finds you spilling over with emotion. The emotion from the slow loss. The emotion from the exhaustion. The emotion from not being able to save them in the way that they helped you grow and you now help them to die. Anyway, tonight I heard this song when my cousin posted it on her Facebook page and perhaps because she is the daughter of my Dad's brother, I have been put into a moment of thinking of the people who are no longer with me.
Have a listen and consider all the gentle love you are giving as you wait for your parent (or another family member) for whom you are caring, as they fall behind.
...That come the twilight should we lose our way
If as we're walking a hand should slip free
I'll wait for you...
That's me dancing with my amazing father, Joe, at a family wedding.
I became his dance partner by default when his wife, and my mother, died after 46 years of marriage and a four-year fight with breast cancer. In this photo, he is 80 and I am 40. During my dad's illness, he loved to dance. Once he heard a catchy tune he could not help himself from getting up and dancing. It was infectious to watch. He would dance with a smile on his face and not a care in the world.
The more people I got to know with Alzheimer's the more I noticed a common trait. A large number loved to dance. And who could blame them? I too love to dance (albeit alone) with the music turned way, way up and literally dance like no one is watching. Even after not having heard a song in decades, I am able to anticipate which rhythm or lyric comes next. Dancing is invigorating, enlivening, and fun. Dancing is a joy. I will explore the phenomenon of Alzheimer's and music more but for today, I just wanted to put this little story out there.
Music has been an integral part of my life. When I was a little girl, my dad would have me stand on the tops of his work boots as I held his hands and he would move me around the living room floor to the sounds of something most likely off a Reader's Digest 8-track compilation. I played the piano and clarinet and having been taught by a nun, yes, I did have my knuckles rapped on when I did not know my scales. This may explain why I am now an appreciator of music and not a player of music. From there, music was the soundtrack to my teenage life as I lived to attend concerts and spent all my babysitting money on albums. I was a journalist for a rock newspaper, once upon a time. Time marched on and some freedoms of youth were tempered with the responsibilities of working regular hours and a child. Music remained in my life, just not at the same volume.
That volume was turned back up when I found myself needing to escape from the stress of watching my mother fail to conquer her cancer. Bouncing between my own family and her care in and out of hospitals my car became a place of refuge and release of the emotions which were simply larger than I could process. I would find myself driving and attempt to disappear in the loudest music possible. Speakers were blown and to this day, so long as my speakers are intact, I have a gauge for the level of stress in my life.
If music was so powerful to me, what must it be like for others? For my dad, it also remained powerful. Unable to recall who the president was or what he just ate for lunch, hearing the music of his youth was like flipping the "on" switch of his memory. His eyes would light up. His lips would start moving. His mood went from flat to animated. Get him to an event or wedding and he was not going to sit in his seat very long. He would even dance to current day songs, the ones he used to describe as, "that music you can't understand what they are singing". So long as it had a beat, he was on his feet.
When at the parties in his assisted living home, surrounded by other memory impaired residents, I realized that this dancing was not unique to my dad. It was like a magic elixir that allowed bones to stop aching, energies to increase and happiness to be rediscovered.
If you are caring for someone with a dementia, have you noticed anything similar? Are you interested in trying this theory out for yourself and your caree? This is really just the introduction to this topic but seeing as today is a Friday and the weekend is upon us, it seemed like an opportune moment to go about instigating a little bit of joy. Let me know how it goes....
This quote from Lewis Howes is today's social media post. A big part of caregiving is about letting go. Letting go of expectations, assumptions, plans. Accepting that you are right where you need to be in this moment is challenging. The illness of a family member, spouse or friend is rarely expected and it can feel like the most unwelcome intruder into our well-planned lives.
Accepting the illness is to stop denying the illness. But denial can be such a cozy coping mechanism. It allows one to float in the space of non-reality within the past, the past of life pre-diagnosis.
The struggle to accept your role as caregiver takes some time. Give yourself the gift of that time. So many adjustments need to be made, internally and externally. I would find myself frequently singing the line from the Talking Heads song, Once In A Lifetime:
"And you may ask yourself
Well...How did I get here?"
Certainly, this life was not really happening, was it? I was on one track with my life when, seemingly overnight, I jumped to another track going in a very different direction. What I wish I could have understood at the time was that this new direction would forever alter the destination of my life. If you believe in the stories of others who have traveled before you, then I ask you to believe me when I echo Howes' message. There will be pain and there will be beauty. In letting go of my planned life my future moved in via a present I did not particularly want. Of course, I had NO IDEA this was happening at the time.
Caregiving is not for the faint of heart. The universe knows your heart can sustain this trek through pain and beauty, what I referred to as the Land of Gloomy Beauty (more on that in an upcoming post).
Is there something that you may be holding onto that is keeping you from fully being present in your life and your caree's life? Is there a way to trust that you are right where you need to be in this moment, to trust in your life?
Difficult for me when I cared for my parents was NOT listening to others, regardless of how well intentioned their comments (or denials) were. Having never been in the role of a caregiver, I did a great deal of second guessing myself. Were symptoms really as bad as they seemed? Was I invading my parent's privacy? Was it now time that I parented my parent? I knew what was happening, I knew to trust my instincts, but the more I doubted myself, the more I questioned others. I had to realize others were not on the front lines and also at different levels of acceptance of the illnesses.
Sometimes the people we love want to be supportive by telling us that the doctors can in fact reverse the fatal disease, or that our care will get out of hospice - alive (?!?!?!) Learning to consult and trust those on my medical team, coupling that information with what I was seeing day to day and taking the sum of those two factors as my guidepost was very beneficial in quieting the noise from others and allowed for less deliberation in proceeding with treatments and, when the time came, palliative care.
It is easy to get wrapped up in the noise of our own doubts and of other's opinions. A caregiver's day moves at warp speed. Taking a moment to stop and quiet all the noises can seem impossible or even indulgent. When you find yourself spinning in the doubtful thought tornado, stop. Create a moment of quiet. Only in the quiet will you hear your inner voice telling what you know you need to do. Breathe. Deeply. In. And. Out. Repeat. Trust in yourself, listen to your inner voice. Be guided by your voice of truth.
I was recently in a conversation when someone brought up the topic of gender in caregiving. I never really paid attention to this matter, beyond realizing that I was a stereotypical oldest daughter caregiver. Stopping to consider the topic as I drove home, I have to say I find it frustratingly limiting and find it creates a predisposed bias toward the expectation that certain roles will be filled by the female of the family. Gender discrimination is like race or religious discrimination. We are all people and those who choose to see things through any filtered lens (be it gender, race or religion) are limiting themselves from seeing the full spectrum of our shared humanity. Why can't it be that family caregivers are able to be just that, family caregivers with each member actively participating in the care of the ailing member? It is a curious exercise to consider where you and your own family fall within the unassuming bias of gender when it comes to assuming which sibling will give day-to-day care vs. which will manage finances. Do labor divisions need to exist at all? I may have been guilty of this bias myself when I, for too long, did not even consider that my brothers could help me. Why was mine the job that needed to be walked away from order to give full time care? Why was I the adult child put in charge of our parents care? In retrospect, it may have been simply expected of me. It all moved to fast to even think about at the time.
My question to you today is... when you stop and think, are there any tasks that could be more evenly distributed within your family when you remove the labels of male and female and pull back from assumed expectations?
Hello. Welcome to The Longest Dance. I am truly so glad you are here. You may have heard about me from a friend or are just looking to see what the story is, either way, you are here and that is all that matters. My intention is to have a spot for us to share thoughts, ideas and inspirations.