Musings Gratitude Day 28

The Rest of the Story Begins

Continuation of Gratitude Day 1 and Day 2.

“In retrospect, a love like Larry and I shared was rare. A gift… Neither of us perfect, but perfect for each other. Regardless of past or present circumstances, love was present. Always. We never lost sight of our love for each other. Even when mired in a shit-storm.” – Lisa Preisler Gratitude Day 2

For 4987 days Lawrence was my life.

He is still with me.

I believe that in my soul.

We are not separated by his departure from earth.

While he was here, we took care of each other.

As it should be.

We made a promise to do so.

He is still looking after me.

He was my life, husband, love, best friend,

and caregiver when I was ill.

I was his life, wife, love, best friend,

and caregiver when he was ill.

As it should be.

Being a caregiver is hard.

Hard.

HARD!

It hurts.

It seared my soul to see my Love, Larry, in pain every day – the sheer degradation of losing his body whilst still having his mind intact.

The surgeries, dialysis treatments, catheters, antibiotic infusions, pain meds, biopsies, canes, walkers, wheelchair, lift chair, aids to get in and out of bed, wheelchair ramp, power chair (that he used once in the driveway). The hope upon hope of receiving a transplant that was dashed three times.

Then there was the uncontrolled pain. “What is your pain level from 1-10?” they would ask. His answer “20”. No matter how many meds they administered, he was in so much pain.

I advocated. Advocated. ADVOCATED.

Researched. Researched. Researched. I think the reason I got my Masters Degree was so that I would know how to research for Larry.

I became the Respiratory Therapist who knew too much about Quintuple Bypass Surgery, Nystagmus, Diplopia, Vertigo, Diabetes, High Blood Pressure, eGFR, Chronic Kidney Disease, Dialysis, Arteriosclerosis, Necrosis, Calciphylaxis, and pain medications. I researched both traditional and non-traditional treatments. Then I had to learn the difference between Palliative Care and Hospice, all the while explaining it to Larry. Filling in the knowledge gaps so informed decisions could be made. So we could make them together. He always had the last word, the decisions were ultimately his.

I was unafraid of insurance companies, hospital administrators, physicians, CEOs, ombudsmen, nurse managers, social workers, home care, outpatient dialysis, pain management, and all across the spectrum of healthcare providers. I had endless meetings with and talked to them all. They knew my name. Some of them didn’t like me. I didn’t care. Not only did I try to make Larry’s healthcare better, but also friendlier for patients to follow.

The point of all this is not to make myself out to be the best wife and caregiver ever known to man (even though that is what Larry told me innumerable times), but to draw attention to just how difficult it is to be a caregiver to a spouse, child, parent, grandparent, or family member.

It takes every minute of every day and the caregiver gets LOST...

…and I would do it all over again for just five minutes more with him.

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Then he died.

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Besides the obvious of being cast into the deepest, darkest cavern of the grief abyss, part of my deep struggle in the early days after Larry’s death was the question “What am I going to do now?”

I was still lost with nothing to do, no caregiver role to fill, a rudderless ship in the deep, dark, sea of grief…

… to be continued

363 XO Lisa