LIFE CHANGES, Part 1

I’d like to write about what’s going on here. It’s a long story,
which begins with a change of address from Belgium to Florida.
To make things easy, I’ll start with something very clear and simple, Box 21.

Life Change, PART 1: Box 21

BoX 21

The view from BOX 21 is unbelievably perfect. You find yourself looking directly down over the orchestra, able also to look out at the audience without turning your neck in the slightest. Seats #1 and #2 are the best, of course. Once you’ve tried them, they are the only seats at the Mahaffey Theatre that you’ll ever want to sit in again. I’m absolutely sure of that. And you’ll definitely feel like royalty when your usher guides you along the back corridor that leads directly to your seats. It’s perfect for someone with a walker or a wheelchair because there are no rows or crowds to negotiate. In our case, there was no one else in the box with us when the lights went down and the choral strength of O Fortuna jolted us to attention.

https://www.youtube.com/watch?v=GD3VsesSBsw

My mother was enamored immediately by the conductor. Unfortunately, we were told that taking pictures was forbidden. We could easily watch his face as he was conducting and were fascinated by the range of expressions there~ friendly, stern, euphoric, urgent, placid~ we were glued to it as he cajoled, pushed, and commanded musicians and singers through the fantastic and raging energy of Carmina Burana. He knew every gut-wrenching lyric. We watched mesmerized as he mouthed them, eyebrows raised, head thrown back, and wand flourished mid-air, pointed at this section or that. Sometimes I was certain that he had glanced our way, stealing a quick peek up at us. It made me feel so close, and I worried that we might throw him off if our eyes actually met. Ha ha. What illusions we entertain in Box 21! We couldn’t understand how the orchestra followed his cryptic gestures, as the downbeat seemed only to be a visual cue, followed immediately by the inexplicably timed unleashing of sound. It was like a secret code of hand signals that no one but the performers could read. Electrified by pounding drums and lamenting voices, we gripped each other’s hands in the darkness, and listened raptly.

BOX 21, seats 1 & 2 is an allegory for the new life mom and I are carving out for ourselves. Yes, she has been declining, but still loves getting all dolled up and going out to a good show. And yes, I have been grieving, but I too still love getting dressed up and going out~ both of us still alive and yearning to be surrounded with the beauty of the living creative world. Yesterday when she heard there was a class nearby, she announced, “Let’s go! I really want to do Tai Chi!” I had to agree. “Me, too, MOM. I’ve wanted to do it for years, but never quite got around to it. Why don’t we both go!”

We missed it today because of a painful stomach upset she got last night, but it’s twice a week, so now it’s on the Friday calendar. We have a pool date with Dana and Judy on Tuesdays and Thursdays, a lunch date with Murph on Wednesdays, and if all works out, Tai Chi on Mondays and Fridays. Monday at 4pm is happy hour at E&E with the Team (me, Mom, Dana and Judy), and Sunday she goes arm and arm with our neighbor Dianna to church. In between are 3 tiny meals a day, and a growing cookbook to document the creations coming out of our kitchen. Weekday evenings at 6pm we have an appointment with Steven Colbert and Jon Stewart. We’re also regular viewers of Oprah’s Super Soul Sunday, which is one of our spiritual ‘nouritures’ for the week.

With Judy at E & E

With Judy at E & E

We like our little glass of red wine at about 4pm, with cheese and crackers and some humus if we have it. It’s usually served out on the back porch where we can watch wispy clouds moving across blue sky, and feel the late afternoon sun on our legs and faces. Calli the cat takes the sunniest spot with the biggest cushion, but we make do, and wouldn’t have it any other way. We both look forward to a quiet evening after the Daily News is over. Mom steals my book sometimes, and I steal hers. Or sometimes we read out loud together, taking turns. One night we sang~ I had Glad’s guitar at the time~ but usually we just sit and read, or talk, winding down along with the sun.

Callie

Callie

I know. This all sounds too idyllic. You’re right if you were thinking so. I’ve only shown one side of life here at my mom’s place in Florida. There are definitely others. But today I have committed to 24 hours of no complaining, so I have to be careful. If truth be told, there really isn’t much to complain about, but I can always find something, and I usually do. The reality is that stress builds up when I don’t ask for help, explain my needs, or take care of myself. When I allow negative thoughts to run rampant through my mind I feel bad, and unfortunately I’m all too used to doing that. As a caregiver, I have to remember that one of the biggest challenges is to make sure I give myself the same valuable care and attention that I’m giving to my mother. It’s like giving yourself the oxygen mask before you try to put one on your child. Everyone knows that it would be foolish to try to do it the other way around, but we often do it anyway. Burnout is a dangerous reality in the world of caregiving, and I have been teetering on the edge of it ever since I got here, 7 1/2 weeks ago. Self-care! It’s become a mantra. That brings me round to the big question: What are my needs, and how can I satisfy them? And what are Mom’s?

Every day we take a step closer to answering those questions for ourselves. One thing I know for sure, there’s more to life than eating, sleeping, and not falling☺ Mom has fallen 5 times since I got here, so prevention has become a daily, moment by moment concern. She’s not really the one afraid of falling~ that’s the caregiver’s big burden, and my number one stressor. It’s easy to get into a red-alert mentality 24/7. After recovering from the jolt of a recent fall, Mom felt good enough to go out with Judy to one of their usual haunts, E & E Steak House, where they like to sit at an outdoor table and sip margaritas. I noticed when she came home that she was fresh and excited and EXPANSIVE. She practically sailed through the door, feet barely touching the ground. The transformation was shocking. I had been overly protective, motivated by fear, and her spirit had started to wither. I felt guilt mixed with happiness when I saw how happy she was. Likewise, when Dana came over and dressed her up in all kinds of form-fitting spandex, and coached her through some deep breathing knee bends, I was surprised how young mom looked, and how girlishly she admired herself in the mirror. Going to see a performance by the Florida Orchestra was the same. She was relaxed, enthusiastic, and fresh, and I had to take another look. Where did the aging parent go?
IMG_1653
IMG_1719
I know we all need to be spiritually and emotionally energized by doing the things we love to do, and being in the places we feel most alive in. And it’s not enough just to preserve life. Living life to the fullest is our challenge now, and every day we take a baby step toward more joy, more satisfaction, and more life. Knowing the time is limited helps.

For me, the pool is an important part of my Self-Care. I never was much of a swimmer in my life, but I’ve discovered since coming here to live with Mom that I love how I feel when I’m in the water. Especially when it’s 87 degrees (the water) and only a 3 minute walk from our front door. I like that I can be alone AND public at the same time. Little by little I’m meeting the regulars, and a few of us know each other by name and it feels good to wave a welcome. I also learn things here and there from random conversations. Last week I found out that the pool gets cleaned 3 times a week. The day before I had found out that living here in this complex entitles us to a free membership at the spa nearby. Being friendly pays off.

Moving my body in ways I never do when I’m on dry land also pays off. I know I’m releasing stress with each stretch of my hand, and I feel as close to being a dancer as I ever have~ gliding through shimmering liquid turquoise, each stroke a work of art. Sometimes I imagine Michael Phelps, and pretend I’m a former Olympic swimmer. People keep telling me what a beautiful stroke I have, and if it looks anything like it feels, it certainly must be.

I’ve been gathering a pool wardrobe since arriving here. The thrift stores are part of my self-care because I feel so good when I find something I love and only have to pay a few dollars for. I have 5 bathing suits now, and they’re all pretty. Even though I’m overweight, I don’t feel like it when I’m walking across the patio or stepping out of the pool like I always did in the past. I feel good about my body, and unconcerned about what anyone else might think. Maybe it’s because most people here are older and more out of shape than I am, but I think it’s also because I’ve finally grown out of all the body-shaming that most of us go through as young women. I did it to myself, but no more!

What else nourishes me ~ physically, spiritually, emotionally, or mentally?

1. Meeting and talking with people~ the owner of Papa’s Diner, for example, and advertising his new restaurant to my neighbors here.
2. Getting advice from Mom’s friends~ who are healthy and still active, and who know and love her.
3. Spending time at the pool~ I know about 8 people by name there now, and I often learn something new about life here when I get into conversation with one of them.
4. The good books that keep coming to me.*
5. Taking pictures of everything beautiful and inspiring. Documenting my cooking.
6. Getting involved in something bigger than myself~ (like IWK, or KMU). I just signed up for a volunteer training program at the Suncoast Hospice Center the first week in December. Looking forward to meeting someone I can make friends with, like Lina, or Linda, or Lia.
7. Having a good talk with Mom over breakfast, or Dana at her pool. Getting an email from Maja, and writing to Anna, or getting a call from Emilie.
8. Singing~ it’s always been a big part of my self-expression, but recently I don’t sing often~ maybe I should find a guitar and take it to an open mic.
9. Mailing a gift package to BonPapa, Jean and Delphine (and buying the things to send them that I know will bring them all joy). I am waiting to hear from them when it arrives.
10. Buying nice things for Mom (the bib, the tickets to the show)
11. Being creative in the kitchen, and mom’s continued appreciation. She thinks I’m a gourmet cook, and I’m beginning to feel she might be right! I would like to get some help putting a cookbook together in a beautiful website, or book format.
12. Recording my thoughts and feelings on my phone as they come up ☺
13. Getting out of the house and going for a walk or a drive (often to the thrift store, and sometimes to the beach.
15. Training the cat to be picked up and held…She’s getting used to my heavy-handed ways, and doesn’t run away anymore when she sees me coming for her.
16. Opening the windows, feeling the fresh air, and breathing.

Mom also loves the pool, but she hasn’t gotten into yet. She calls it ‘the beach,’ and I do to. She likes to wear her suit and bask in the sun, and watch me do all the work. I’m pretty sure though that when she finally does get in the water, she’ll be a convert, just like me. She always wanted to be a dancer, and she’ll find out that she still can.

The 'beach' at Imperial Palms

The ‘beach’ at Imperial Palms


IMG_1723

She gets most animated when friends visit. Also when she meets new people on our walks around the gazebo across the street, or the neighbors passing by. She loves to stop if she spots Jim driving by in his golf cart, or the bus driver slowing down to wave. Everybody around here seems to know and love her. “Hi, Marilyn! I hope you’re not getting into any trouble today.” ☺IMG_1547

She reads the daily paper, does the crosswords, and loves reading a good novel. Her friends keep bringing over books for the two of us to read. Most of them are about the spiritual journey. I’ll have to write more about that in another post.
In the exercise department, Mom loves brisk, in-sync walking, arm in arm with a friend. We link arms, start out on the same foot~ left, right, left, right~ and off we go. We made it to the beach only once since I’ve been here, and that’s too bad, because she truly loves to watch the clouds at sunset. But she get’s tired more easily now. That’s a change I’ve noticed just since the summer. She doesn’t go as far as she used to, but she still exclaims about how good being out makes her feel. She can’t do it alone without a cane or a walker though, and that’s one of the transitions that she has had to adapt to. More about all this in my next post.

The I love my Walker Pose

The I love my Walker Pose


IMG_1707

Life Change, PART 2: The UnderBelly (to be continued in the next installment ☺)

Advertisements

PASSAGES in CAREGIVING

Passages

PASSAGES IN CAREGIVING,Turning Chaos into Confidence, by Gail Sheehy

I never thought about becoming a caregiver. Most people probably don’t. It just happens. I told mom that I wouldn’t want to do this for anyone else.

In any case, when I realized what my new role was, I called upon Gail Sheehy to explain the ins and outs of the caregiving passage. Hers is my new favorite book, and it’s helping me to understand the game, put some of the challenges in perspective, and most important of all, realize that the caregiver needs to take care of HERSELF as well.

An important way to do that is to cultivate your social network:
-“Friendship has a bigger impact on our psychological well-being than family relationships.” (from a study by Rebecca Adams of the University of North Carolina).
-“The best antidote to preserve the brain is an extensive social network.”
-“It’s how many people one knows intimately and feels comfortable confiding in.” (Dr. David Bennett)

I’m getting a great deal of support from my two sisters, one who is here nearby, and the other who is in North Carolina. I confide in both of them almost daily by phone, and they understand the stresses and the joys of the job. They’ve both spent a lot more time living with Mom than I have.

But, I realize that although it’s been 5 weeks since I arrived here in Clearwater to live with my mother, I haven’t reached out yet to any of my friends from my previous life in Belgium, or Korea. I NEED to get started cultivating those relationships again, so I made a list today of the women I feel comfortable confiding in. I know making a little effort to write to them will bring me a lot of returns. First, I won’t have to open my email and see nothing there. That’s always so discouraging 😦

I’d like to write more about what I’m learning here, but I’ll have to save that for the next time. It’s way too late, and getting enough sleep is a high priority on a caregiver’s list of self-care. If you’re reading this and you’re a caregiver in need of support, check out this book. It’s full of ideas, and resources, and stories from people who have been there, and survived.