You Can Do It, All You Need Is Love

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Diane. I’m a Baby Boomer woman from Florida. I was a former caregiver to my husband who passed in 2015.

What did your life look like when you became a caregiver?

I was a full-time writer, author of two published books plus various short stories and magazine articles. I had just secured a New York Literary Agent who was marketing my latest novel and had just completed a new novel. Honestly, I believed I was on the verge of a big “breakthrough” in the writing industry. I was happily married for 16 years to a wonderful, intelligent, handsome man who was a brilliant artist, a great dancer and the love of my life. We were soulmates and best friends.

Who did you care for and what prompted their need for care?

In October 2010, my husband underwent a surgical procedure called a carotid endarterectomy, to clear a blocked carotid artery. The surgery went well, and I met him in the ICU afterwards. He seemed fine when I left that evening. During the middle of the night, he suffered a massive stroke which was overlooked by the ICU nurse. I found him in the morning unable to speak, unable to move. I ran for a nurse and asked her to page a doctor.

My husband was rushed to emergency surgery. However, it was too late. His brain had been without oxygen for over 12 hours and scans revealed that 2/3 of his brain was damaged. He was in a coma, on life support, and nearly died several times. He suffered various complications including a second stroke, pulmonary embolism, sepsis, and pneumonia. I was asked to “pull the plug,” but couldn’t do it. I knew my husband was a fighter and wanted to give him a chance.

On my 50th birthday, he somehow managed to pull out his breathing tube and began breathing on his own. Best birthday present ever. He was hospitalized for 3 months, including a brief stay at a rehab center. Though he was alert and breathing, he could not stand or walk. He had a feeding tube and expressive aphasia. He was blind in one eye. The doctor called him “nursing home material.” But at 52 years old, I didn’t think he would survive in a nursing home.

I had spent every day of those 3 months by his side and had witnessed the neglect (leaving him lying in his own feces for 45 minutes, refusing to order pain meds when he was screaming in pain, bedsores) and mistakes (wrong meds, wrong doses) made by overworked medical personnel. I thought he’d be better off at home under my care.

What was a memorable learning?

I mistakenly thought the insurance would pay for home health care. They did, but only for six weeks to “teach” me how to care for him. How to manage his feeding tube and connect the nightly feeding pump, how to roll him side to side to change the bed sheets from under him, etc.

I wasn’t prepared for the amount of bodily fluids I had to deal with. They had prescribed him a daily laxative, which meant daily diarrhea, and he couldn’t handle the urinal. So I was constantly changing adult diapers and urine soaked sheets. I remember sitting on the back porch one night after he had gone to sleep and crying my eyes out. I didn’t know what I was getting into.

What surprised you about caregiving?

Foremost, the lack of resources out there. I had thought there would be plenty of help, government help, charity help, but my husband fell through the cracks. He was too young for the senior programs, too old for others, or “too rich” which is laughable. I thought he’d have constant rehabilitation therapy, but the insurance covered only eight weeks. Then he would be kicked out for “no functional improvement.”

I also learned I could do it. I could change a diaper without throwing up. Well, at least after the first few times. I learned how to transfer him from wheelchair to bed with slide board, how to crush his meds and syringe them into his tube, and how to do his therapy exercises (physical, occupational and speech) when the insurance ran out. I had a bar put in our hallway to help him with his walking practice.

How do you try to balance being a caregiver while caring for yourself?

I had no help other than one friend who would come over and sit with my husband so I could run to the grocery store, pharmacy, and take care of errands. No family in town. No children. It’s hard to take care of yourself while taking care of someone else 24/7. Caregiver burn out is a real thing.

As a writer, my “career” came to a screeching halt after the stroke. To keep my hand in writing, I started a blog. First to keep distant family and friends updated on my husband’s progress, but also to vent a little, rant a little, share trials and tribulations. I found there was a whole stroke community online that I never knew existed. Soon I was getting hits on my blog from all over the world. I was asked to contribute articles to online stroke sites. This was great for my mental health.

As for physical health, I was lucky to stay healthy as I had no health insurance. For exercise, I walked the dog very early in the morning, after flushing my husband’s tube and giving him his morning meds. Pushing a wheelchair is pretty good exercise too.

I learned sometimes it’s better to laugh than to cry…

What resource would you recommend to caregivers?

Join a support group for caregivers. If you can’t join one in-person, find one online. I found much help, information and support for caregivers of stroke survivors. There are many caregiver sites online. It’s good to know you are not alone.

What advice would you give to caregivers?

I’d tell myself there is a thing called “bowel movement management” where you track BMs on the calendar and only give a laxative if he hasn’t had a movement in a few days. I thank the nurse who told me it wasn’t necessary to have a daily laxative or a BM every day.

I’d tell myself there is a thing called a “condom catheter,” which is a godsend. I wouldn’t have spent so many sleepless nights changing urine soaked sheets, or so much time in public restrooms waiting for him to pee.

I’d tell myself that a feeding tube can be changed out every eight weeks. Just get a GI doctor to order it from a home health agency. It would have saved me countless hours of trying to unclog his tube and many trips to the ER.

I’d tell myself that if you ask a doctor, you can get an order for a lab technician to come to the house to draw blood for his weekly blood test. It would have saved countless trips to the lab.

I’d tell myself, hey, the pharmacy will deliver meds to your house if you ask them!

Lastly, I’d tell myself that you can do it. All you need is love.

Is there anything else you’d like to share?

People told me I was crazy to do what I was doing, taking care of him at home, our whole living room filled with medical equipment. Doctors told me I couldn’t do it. Friends told me they could never do it, didn’t know how I did it. They would have put their loved ones in a nursing home.

I took care of my husband for nearly five years, and I don’t regret a single moment that we shared. The ups and the downs. Though he never regained the ability to walk or stand on his own, though he never regained his swallow, he began speaking clear, concise, full sentences. He used to love to sing. Every night, we went to bed, he in his hospital bed in the living room, me in our bed that I dragged into the adjoining dining room to be keep an eye on him. We’d call across the room:

“I love you!”
“Love you more!”
“More and more and more!” He’d sing the last “more” like an opera. “Moooooooore!”
I’d say, “You win!”

Every morning, he’d sing out, “Good Morning! The sun is shining!” to wake me up.

Until one day in May 2015, I woke up to find the sun was shining, but he wasn’t singing.

He had passed away, unexpectedly, in his sleep. He was 56 years old.

He had always said that he wanted to die that way: “Wake up dead” is how he phrased it. I would laugh and say, “Hey, you can’t wake up if you’re dead.” He would laugh too.

I do miss him so very much. And love him still.

Where can you find Diane?

Diane is writing a memoir about what happened to her husband, their life, and their medical malpractice lawsuit. Read more about it on her blog Pink House on the Corner.