Confessions of a Caregiver, Vol. 2, The One Constant

Hard goodbyes

Claire and I returned to New Zealand at the beginning of 2014 to wrap things up. During our two-month stay, we finished selling our holdings, a process that entailed donating bag after bag of accumulated stuff, gifting books and equipment, all the necessary steps in letting go of living a decade Down Under.

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Our Wellington apartment was on the top floor

It was also a fun time. Claire was still functioning relatively freely, so we indulged in a lot of yoga, water jogging, and partying with friends at cafes and restaurants. One such gathering, a breakfast with eight of our former students, lingered into lunch with ten around the table. Such a delightful, delightful sangha. But then it came: the inevitable time to say farewell to friends and acquaintances. It was hard to say goodbye.

Little did Claire and I know that much more letting go lay ahead back home in Oregon.

Changing roles

As the months passed, Claire‘s freedom of movement became more hindered. She was still able to dress herself and do most of the daily things, such as house cleaning, showering and teeth brushing, etc., but she gave up driving and started using a supermarket mobility cart whilst grocery shopping. On her first spin around the market, she knocked the front door off its hinges. We laughed with an “Oi!” and a “Do you have a license to drive that thing?”. Most days I was out of the house for 6 to 10 hours a day working because she was fine on her own and busy writing the book Shakespeare’s Yoga.

Over the next year and a half, I did a little bit more to assist my wife with showering, hair washing, and hairstyling. I am so thankful that my mother, Louise, was a hairdresser. She owned a hair salon when I was in my single digit years. I learned a lot about hair by just by watching, as well as from her instructions. My mother also taught me how to sew, knit and crochet. Pretty interesting that a big, macho man knows how to do all these things, wouldn’t you say? Not that I know how to do them now, except for sewing on a button now and then, and of course hairstyling.

But I digress.

With Claire still fending for herself, I started my own construction company, building additions, decks, etc. and flipping houses. My business did very well, so well that I had to turn away work.

 

As Claire‘s movement became more restricted, however, I began to do more with her and for her. In other words, I evolved into a caregiver. Gradually, I began closing down my construction company so that I could be a full-time caregiver. A transition, I confess, was easier said than done.

Put the oxygen mask on first, then assist others 

Although my wife’s physical condition had weakened, her intuition remained as sharp as ever. I love being my funny self because it makes Claire laugh (and, oh, how I love to see her laugh, everyone does), but she wasn’t laughing anymore. She could see that I was getting angry and frustrated because I was having less and less time for myself. I was cussing up a storm over minor mishaps, which certainly didn’t make her laugh; rather, quite the opposite, she often cried a cry of nervous exhaustion. And the more she cried, the angrier I would become. In 10 years of marriage, this toxic emotional cocktail proved a depressing, new phenomenon for both of us. Not good. Claire insisted on caregiver relief–for both of our sakes.

Although I resisted at first, eventually we hired caregivers from private companies for several days a week so that I could have some downtime and finish remaining construction jobs. Immediately I could feel a positive difference: the anger dissipated; I was more relaxed; I now swore only in short spurts rather than in multisyllabic run-on sentences; and very importantly, I was able to take care of Claire with greater loving compassion. It was a win-win.

Today we have a wonderful caregiver in Scottsdale named Maggie who comes four mornings per week for five hours per morning. She is absolutely fabulous, compassionate and capable in every way. This relief gives me the opportunity to go for my coffee and donut, lift weights, do miscellaneous chores and have time for me. I read, write these blogs, and sometimes do nothing but just be.

The wisdom to know the difference

One of the most difficult parts of the journey into caregiving, especially as a spouse and a manly man in construction for 50 years, one able to build and fix anything, is that I can not fix my wife’s FSH muscular dystrophy.

I’ve learned it’s best to concentrate on what I can do, and that is a lot: I love her. I am there for her, physically and emotionally as best I can. I hold her, the simple act nursing us both. I recall with her all of the wonderful times that we have shared in this country and in New Zealand, and remind her of how much more there is to do together. I constantly remind her that we can do anything we want, and go anywhere we want. We just have to modify to fit our situation.

A brand new day

Claire and I create each day with what’s in our tanks physically, mentally and emotionally. We discover new experiences through travel, bike/scooter rides, swimming, and the therapies that we go to every week to strengthen her body and mind (OT, PT, acupuncture and massage). We are blessed in so many ways.

 

This morning is a rest from lifting weights and from caregiving. Instead, I am at the library enjoying finishing up this segment of my blog “Confessions of a Caregiver” while Maggie assists Claire. For my fellow caregivers out there, I offer these parting words: there is only one constant in life and that is change. Ride the waves with love, including loving yourself.

More soon.

In the meantime, you can reach me at: lcassella@icloud.com

— Lou

3 thoughts on “Confessions of a Caregiver, Vol. 2, The One Constant

  1. Well that is a beautiful confession Lou, honest, humble and inspiring! Feels awhile we spoke and missing your wisdom :), soon we’ll share again. Meanwhile the picture reminds me of your part both in our lives, the projects with Ethan, the love in my floor and many moments more and more to come. Take care and see you soon again . Much Love to both of you. Martine

  2. Good morning (from ‘Down Under’) Lou. What a clear, honest, wonderful sharing is this ‘Confessions of a Caregiver.’ I can see an enormous benefit to many in this sharing of your thoughts. I can so clearly ‘see’ you both and am sending love +++++

  3. Louie, How very special. Your’s and Claire’s love for each other is shared so beautifully. Many thanks, dear friend for your explicit outpouring of feelings. Hugs, Janet

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