Do sweat the small stuff: Why nurturing is just as vital as nursing at the end of life

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It may sound crazy, but if there was ever a time to employ the cliché, “Stop and smell the roses,” it is when taking care of a loved one who is dying.

Family caregivers can become so preoccupied with monitoring, managing, and documenting their loved one’s declining health that indulging in the simple pleasures of life seems like a luxury that they cannot afford.

But the simplest of actions can have a profound effect on the terminally ill person and the caregiver.

While I know that I provided the best medical care I knew how to my dying mother, and the home hospice staff kindly reminded me of that on each visit, there is one area of care that I neglected.

My mother appreciated the simple joys of life more so than most people, yet I was so caught up in nursing care tasks that I missed multiple opportunities to help my mother transition from this life with a smile on her face.

Safety first, but don’t stifle

My mom remained inside her tiny condo over the course of her last month. One of the last times she left the house was when her personal care attendant drove her to get an ice cream cone. Mom raved about how good it was. I am forever grateful for the kind caregiver who knew how to make Mom happy.

My mom was a fall risk but I treated her like the boy in the bubble during her final weeks. It wasn’t until the last week of her life that she was totally bedridden, but I kept her on a short leash even while she was still mobile. (The hospice-provided walker didn’t arrive until the day before she became bedridden.)

One time, we were in the bathroom and Mom leaned over to smell the body wash that I had just bought. She loved fragrances of all kinds. She swayed a bit on her feet and I swooped in, chastising her for leaning over the bathtub for something so frivolous. I was just being protective, but I should have set her down somewhere safe and brought the bottle to her so she could have a sniff without putting herself in danger. Instead, I just navigated her back to bed.

A room with a view, a breath of fresh air

My mother spent the last week of her life in a darkened, stuffy bedroom. She said that she wanted the blinds left closed, as she was always concerned about privacy. But when my mother was well, she loved watching the birds and feeling the warm rays of sun stream into the house. If I had coaxed her a bit, and opened the blinds just a little, it may have lifted her spirits (and mine as well.)

The last time my mother stepped outside the front door was to check on a bird that had struck the window during the hospice intake interview. I feel bad that I quickly shooed her back inside, instead of offering her a chair and letting her enjoy the beautiful day for a few minutes. (Thankfully, the bird was nowhere to be found.)

There was also a back porch with a table and chairs that I could have helped my mother access with assistance. From there, Mom loved to watch the deer meander through the woods. I was so drained from caregiving duties that going outside seemed like another monumental chore. Now I know the extra bit of effort would have been worth it.

What I did get right: I bought her a bouquet of flowers for Mother’s Day. She loved the flowers so much and touched them each time she passed them. The flowers became the bright spot in her bedroom, a symbol of beauty in the midst of so much ugliness.

Find humor anywhere you can

Here’s another cliché: Laughter is the best medicine.

My mother often remarked that she was born with a chip programmed to make others laugh. She loved to tell corny jokes and funny stories.

I skew towards the more serious side, much to Mom’s dismay. I had heard Mom’s corny jokes a hundred times, but the joy it brought her to see others smile and hear them laugh was priceless. I wish I had laughed more often. It probably would have done me a world of good too!

One of the last times my mother made me laugh was the day she started morphine. In preparation for any vomiting, a common side effect, I had a plastic bucket at her bedside. When I helped her get up to go to the bathroom and asked her how she felt, she placed the empty bucket on her head and did a little dance. Her smile lit up the room.

I had bought my mother a silly talking bird toy that she loved when she was feeling better. I wish I had taken the time to set it up in her bedroom so it could have offered her a fun distraction during those long days spent in bed.

Music to soothe the soul

If you enroll a loved one in home hospice, you will likely hear from staff members the positive influence music can have on those who are actively dying. One’s sense of hearing often remains intact, even when other senses begin to fail.

My mother loved her collection of recordings from music legends like Johnny Cash, Elvis Presley, and John Denver. The hospice nurses encouraged me to play music, but when I asked Mom, she didn’t seem very interested. To be fair, my mother loved to listen to music when she busy doing household chores. She was not the type to just sit around and listen to music.

I was afraid that if the music was playing, I might miss my mom calling to me for help. I could have remedied this by spending more time in her room.

I was playing music for her the morning she died, and true to Mom’s eternally positive spirit, she took her last breath to an upbeat Trini Lopez tune!

Dying is often an unpredictable process, with bursts of energy along with long stretches of sleep. Take advantage of these bursts of life and try to create moments of joy whenever possible.

Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.


Originally published at thecaregiverspace.org on August 10, 2015.

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