The Way Home

Disclaimer: It’s all fictional, based on my personal experience, imagination, and observation over the years.

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It wasn’t because Kayla was only five that she couldn’t understand her mother. Kayla thought that sometimes her mother simply wasn’t making much sense.

Take this morning as an example. When Kayla asked her mother why Grandma was living in that big pink place, her mother explained that Grandma was sick.

“But I don’t have to live in a big pink place when I am sick! I stay at HOME with Teddy and Bunny. And you and Daddy always come and read and sing to me until I fall asleep.”

Faye, Kayla’s 13-year-old sister, interrupted, “No, Kayla. Grandma is REALLY sick.”

“But Dr. Bob said she could go home once she’s stronger!”

“Well, that is her home now.” Kayla’s mother said matter-of-factly.

“No, it isn’t! I remember her house. It is small but it smells like roses!”

Faye rolled her eyes and said, “You’ve only been there once or twice. You can’t possibly remember!”

When her mother kept quiet, Kayla persisted, “Mommy, can’t we take her home? Our home?”

“That’s enough!” Faye shoved her little sister aside. “Last time you saw Grandma you got so scared you ran away. We’re not taking her home!”

“Hurry up, kids! You don’t want to be late for Sunday school!” Kayla’s dad waved from the car.

***

Kayla actually liked going to that big pink mansion. Her sister Faye said it was “de-la-pi-da-ted.” Although it was old and it had a funny smell to it, Kayla liked the frogs by the pond and the cornfield nearby. It was very pretty.

Most importantly, Kayla wanted to see her grandmother. She was not sure how long it had been since their last visit, but it was long enough that she finally had to ask her mother about it. Kayla didn’t understand why her mother always behaved strangely when she asked about Grandma.

Kayla loved her mother a lot. Sometimes she wondered if she would still love her mother a lot when her mother was her grandmother’s age.

“Mom, these are for you!” Kayla handed her mother a bunch of paper carnations after Sunday school.

“They are beautiful! Did Mrs. Wilson teach you how to make them?”

“No. I taught everyone! Mrs. Wilson wanted us to make something for Mother’s Day. Grandma showed me how to make flowers out of toilet paper last time, so I showed the other kids.” Kayla grinned.

Kayla’s mother held those flowers closer to her chest, “Thank you, sweetie. I am proud of you…”

Something was wrong. Kayla noticed the startled look on her mother’s face as her voice suddenly trailed off. That’s not the look one would expect from a supposedly proud mother.

“Mommy, can I send some flowers to Grandma?”

“Mommy? Are you listening?”

When they got into the car, Kayla’s dad commented on those flowers. “Good job, little girl!”

“Grandma taught me how to make them. I want to send some to her.”

Glancing at his wife and then his younger daughter, Kayla’s dad spoke in a soft, hesistant voice, “Maybe you can bring her some when we go see her next week.”

“We’re going there next week?” Faye removed her headphone and frowned.

“We’re going to see Grandma on Mother’s Day!” Kayla was the only one who seemed to be excited about it.

(To be Continued…)

Communication

We used to have a patient with a “trach.” The new case manager was annoyed that our patient refused to use the pen and paper he gave her to “talk” to him. He didn’t realize our patient was illiterate.

A new nursing home resident didn’t appear to speak English. A staff gave him a communication board filled with some simple and “universal” images. The resident pressed every button on the board and giggled. He had dementia and didn’t know what the board was for. 

Human communication is one way to enhance understanding. But without sufficient understanding of the individual and a mutual desire to “connect,” even the fanciest “tool” will not be able to facilitate communication.

Carer, Caregriver, Care Partner?

Whether we like it or not, our experience is often shaped by our language. Most of the changes we see over the past century have been fueled by our desire to show greater respect for all individuals. For example, while it was “fine” to use the term “handicapped” several decades ago, these days I am not even sure if “individuals with a disability” is “good enough.”

In general, I welcome these changes. That said, I am having a hard time with my own reaction to the term “care partner” as opposed to “caregiver.” In the UK, Australia, and New Zealand, the word of choice used to be ”carer.” In North America, “caregiver” has been around for several decades. (When I was a child, it was perfectly fine to use the term “caretaker.” Apparently, that term has gone out of fashion.)

So, where does “care partner” come from? What does it really mean?

Partnership suggests that there is something mutual about the relationship. It may imply joint decision-making and shared goals. For some people, reframing “caregiving” as “care partnering” allows them to feel more empowered. The emphasis is not on “giving” and “receiving.” Some family members have expressed that when they perceived themselves as “care partners,” they no longer felt like they were “giving up” or “sacrificing” part of themselves as they cared for a loved one. In the ideal world, partnership probably suggests that the care you give will actually be received!

In the ”real world” I live in, “caregiving” appears to be more “honest” than “care partnering,” especially when we are talking about family and friends who provide care. I hope this is not going to offend anyone but more often than not, caregiving does not occur in the context of a balanced relationship. A caregiver can indeed be giving without receiving. In fact, a caregiver can be giving while the potential recipient keeps resisting. I am extremely particular when it comes to words. I prefer the term “companion” if we don’t want to focus on “giving” or the “transactional” aspect of caregiving.

Maybe the term “caregiver” will become obsolete one day, maybe it will stay. Perhaps the label really matters to some and not as much to others. Language can shape our experience but if the core of the being is characterized by resilience, it probably won’t make a huge difference whether one is a “caregiver” or “care partner.” So, is it absolutely necessary to throw another jargon into the mix to confuse ourselves?

What are your preferences?

Mental Health Awareness Month

“Mental Health,” “Mental Wellbeing,” “Mental Wellness,” “Mental Illness…” Regardless of the term you use in your workplace and the emphasis of your agency, I hope you’ll be doing something to raise awareness this month and help make a difference!

Music in My Heart

This is a really beautiful video clip about a nursing home resident’s response to music: The Power of Music
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Music has the power to bring people together, heal, uplift, and transform the lives of many. Many years ago, I met a woman who used to be a piano teacher. Struggling with late-stage Parkinson’s disease, she could barely lift her head or speak. Whenever I sat her in front of the piano, she would start playing. Always with one finger, always slow and unsteady. It wasn’t what anyone would refer to as a “song” but to those of us who met with her on a regular basis, it became the song of her life. Behind that blank stare, we saw a steady glow of love for music, for life, and for the man who continued to stand by her.

One of my music therapist friends used to tell me she thought she’s one of the luckiest people in the world, because she could engage in her favorite activity every day at work. I know she’s right.

Does music play a part in your professional/ caregiving experience?

I know it’s played a big role in mine…

The New Normal

Baby Boomer Caregivers

To top it off, some of these boomers are still “taking care” of their adult children and grandchildren. This can be a very challenging situation.

Miracle

Mrs. A was becoming progressively worse physically and mentally. Everyone was concerned but every attempt to make her talk or do anything for herself had been unsuccessful.

One afternoon, I went to her and asked, “In order for you to get better, what will need to happen and how can we be of help?”

“Give me a miracle.” She didn’t utter another word after that.

A few hours later, I handed her a MIRACLE.

“What do you think?”

To this day, I still remember the smile on her face.

“It’s very nicely done and it’s in my favorite color.”

“I’d love to give it to you if you wish, but we’ve got to work together to make it work!”

That’s how we started talking regularly and how the “miracle” slowly happened.

***

Sometimes what you learn in grade school is more powerful than what you learn in graduate school. Papercutting is one of them. As I work on my Easter greeting cards this morning, I can’t help but think of this.