Confessions of a Caregiver, Vol. 4, Adventures in Healing

Despite the ups and downs of this intense life chapter – or maybe because of them – I find my connection with Claire deepening, not knowing that I could give and accept love with such intensity.

Over the past two years, my wife has needed, not one but two, kidney stones surgically removed and a parathyroid operation; then, we sold our Oregon home and moved to sunny Arizona. Marrone! (That’s Italian for holy shit.) Major medical concerns and a relocation south make for a very full life, and an extra stressful load. Throughout it all I confess that more caregiving relief has been helpful. I remain Claire’s main caregiver, although foremost her husband, lover and life companion. And sometimes these very roles make me a creator of angst and tears because the whole experience is so overwhelming – for us both. Finding balance and peaceful moments amidst unexpected trials has been a journey best taken one day at a time.

What is going on?

A year ago Claire started passing her first kidney stone and had it surgically removed using sound waves – not fun, especially on top of progressing FSH muscular dystrophy. Only nine months later she had another kidney stone – marrone is right. This time a laser had to break it up because it was so hard. Claire grew increasingly suspicious that something else was going on. Her instincts would prove correct.

With rapidly increasing muscle weakness, abdominal pains and terrible bouts of anxiety, she researched the symptoms of hyperparathyroidism. She had them all, including elevated calcium levels and repeated kidney stones. Recent doctors had never checked her PTH (parathyroid hormone) levels to see if a hormone imbalance was connected to her recent medical changes and subsequent surgeries.

Claire insisted that her GP refer her to see an endocrinologist. Immediately.

It was no surprise: an ultrasound showed at least two out of the four parathyroids suspiciously “abnormal.” Within weeks, insurance cleared for one of Portland’s best facial surgeons to perform the delicate procedure.

Given the severity of Claire’s condition, the surgeon made special provisions to operate ASAP after a CAT scan further defined all suspicions. During the four hour surgery, he removed 3 1/2 parathyroids, and put a small titanium marker on the remaining 1/2 so that it could easily be found again if ever necessary. Most importantly, Claire’s PTH level dropped from over 200 (extraordinarily high) to 18 (absolutely normal) as soon as the infected parathyroids were extracted. After 10 days of intense physical and occupational inpatient therapy, (a time when I could catch up on some sleep because I wasn’t turning her at night,) she returned home feeling much better: anxiety levels dropped, abdominal pain disappeared, calcium levels normalized, and – knock on wood – there hasn’t been a kidney stone since. Advocating for one’s own medical health paid off. (Italian again: grazie duo – thank God.)

A surprise move

Soon after returning home from the hospital, a woman from Alaska made an offer on our house in Oregon; and she wanted it fully furnished just as Claire had designed it. We accepted, and prepared for more letting go. Releasing things you’ve had for years, whether treasured or trashy or even though you haven’t noticed such items in years, is very confronting, a lesson in “it’s all just stuff.” What matters is that Claire and I have each other. And that above all else is what keeps us moving forward despite the relentless devastations of FSH muscular dystrophy trying to hold us back.

With help from a wonderful friend, Geri, we packed our remaining personal belongings. Then on a clear November morning, I loaded our van and the smallest Uhaul trailer I could rent, and we drove to Arizona to begin the next phase of our life together.

Desert dwellers

The beauty and beasts of the Scottsdale bajada surround us now. With its ancient saguaros and the midnight howl of coyotes, desert living reawakens wonderment, strengthens the soul, and offers healing. It’s also ideal for exceptionally good tanning almost year round, an especially nice bonus for this Italian guy!

Claire goes for outpatient physical and occupational therapy two times a week for 90 minutes. These sessions are hard work. She amazes me with her determination to get the muscles to work with the latest technology. Claire also rides her red scooter as much as possible, sometimes with me alongside her on my bike. We continue to discover more multi-use trails in both Scottsdale and Tucson, and they are beautiful. When weather permits, (which it hasn’t much this unusually cold winter,) we enjoy the condo’s heated pool. Our new desert lifestyle also includes Maggie, Claire’s part-time caregiver, the most amazing caregiver we have had the pleasure with whom to work, play, cry, and laugh Monday through Fridays.

There is so much more life to share. I’m exactly where I am supposed to be in this lifetime, doing what I am meant to do: caring for and giving to Claire while she cares and gives to me – each in our own way. I am not always perfect or patient, and neither is she. But that’s okay. It’s all part of the push and pull of caregiving, part of living a marriage to the fullest, and a part of our souls’ adventure together.

Until next time,
Lou

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