Coping with Caregiving
In Your Own Way
Immediately inside the door to my sister’s house lay a beige mud rug. I kicked the snow off my boots and set them on the rug. After brushing the remaining snow off my blue jeans, I opened a second door. I stood in the entrance way, giving my eyes time to adapt to the dimly-lit dining room, now emptied of most of the typical furniture. Instead of the large wooden table where our extended family had gathered for years to celebrate birthdays, holidays or spur-of-the-moment family get-togethers, I found the outline of a hospice-issued bed and a table lamp on the far side. I sought out the small ceramic night light fixture with the words “HOPE” engraved into the cream-colored shade and navigated by that light.
“Sit down, Aunt Amy,” my niece invited.
I paused, feeling for the chair and a moment later, I was seated.
My glance rested on the the outline of my sister’s now tiny frame in the center of the bed. She said something inaudible, and I looked to my niece.
“She thanked you for coming and asked how Grandma was,” my niece interpreted.
I turned toward my sister.”Of course!”I would never stay away. I couldn’t. “Mom’s fine.” Actually, Mom’s legs were hurting her. But at 85, that was par for the course.
A shadow entered the room. It was my youngest niece, who had just turned thirty last year. With baby River on her shoulder, she lowered herself into the chair next to me. “Whachyagot there?” She pointed to my typed list.
“Some things I wanted to share with your mom.” It was a list of 25 special memories and 15 things I loved most about my sister.
“Here, Aunt Amy. Why don’t you sit on the other side of Mom,” Rachel invited. “She can hear you better.”
Or equally important, I could hear my sister better.
Obediently, I stood up. I willed my eyes to work harder to find that other chair. Do not run into the bed. I moved slowly, feeling my way around the base, scanning the area so that the chair would stay in focus. Getting closer. I reached out and found the edge of the straw-woven matting and sat down. My sister’s eyes met mine briefly before she closed them again.
That afternoon I shared my heart with sister and my two nieces. It was like old times except that my sister, usually wiping down counter tops and interjecting her comments, lay motionless, listening intently. Once or twice, she wet her dry, cracked lips and a small smile appeared. Though the “girls” were all grown up with children of their own, they seemed to love hearing the stories.
“You guys did a lot together! I never heard that story before, Mom!”
I did most of the sharing but I was glad to let my sister know what memories mattered most and why, and that she had impacted me.
“That’s a lot of memories,” my sister said, slowly, her voice raw from the strain of trying to speak.
She still wore a hint of a smile on her face though I could tell she was tiring. My hands went to my phone and I pulled it out of my bag, checking the time. Nearly two hours had passed.
Rachel smoothed out her the corner of the bed cover. “Thank you for coming, Aunt Amy. This has been a really special visit. Emily and I learned a lot, didn’t we, Em?”
“Yeah,” she exclaimed, bouncing her six-month-old on her shoulder. “We did. Momma, do you need something?”Emily asked, always conscious of my sister’s comfort.
“Okay, right, I’d better go now. ” I stood up, grateful for the time with my sister and answered prayers. I had feared that I wouldn’t have the time to share these cherished memories with her and she’d never know how much they meant to me.
Seconds later, I followed my brother-in-law down the stairs, stepped into my boots and reached for my long white cane.
Everything is possible with God. He meets the desires of our hearts. Having my nieces serve as “interpreters” of the same language showed me God’s sense of humor and that He meets us at the point of our needs.
Many of you are vision- and /or hearing-impaired like me. Or maybe your age impedes you from doing all that you want to do.
Caring for and communicating with a family member who is seriously ill is scary when your senses are limited.
It’s easy to feel left out or even unimportant in what you can do. Other family members are focused on the one who is ill and sometimes forget the needs you have. Even navigating a now unfamiliar room in the dimmer light takes greater concentration and sometimes, assistance.
I’d like to offer 5 tips I’ve learned in order to encourage you should you face a similar situation:
TIP 1: Pray
I cannot emphasize enough how much you will gain by praying. You don’t need any special sight or hearing to pray. What should you pray for? Healing, God to reassure family members as they cope, peace, for yourself. Seek scripture to share or help you get through this period. Pray that His words come to you throughout the day.
TIP 2: Don’t give up before you start!
Know your worth. Although you have difficulty with one or more of your senses, don’t let that define you or keep you from making a difference. Your loved one has his or her overwhelming challenges. Don’t waste time feeling unappreciated if you can’t contribute the way you think you should. I offered several times to juice various vegetables in healthy “green”shakes, which my sister used to build up her immune system and strength. I was hurt when it seemed everyone ignored me. When my niece said tactfully, “It’s really hard, Aunt Amy. I have difficulty doing it,” I let go. Sometimes we have to accept others are better suited to a task. It doesn’t mean they love that person any more or we love them less. It’s not a competition. Trust that you are needed and have something special to contribute.
TIP 3: Communicate Your Needs
Don’t be afraid to voice your needs in order to share time with a loved one. If you need help navigating, speak up. Someone in your family will be happy to help. I had to learn that. I was so ashamed of my hearing problems that earlier I pretended I heard when I really didn’t. I was embarrassed to ask my sister to keep repeating herself. When she found out I had pretended to understand, she felt that I was lying to her and got angry. I had to brainstorm solutions: move closer, make sure my hearing aid batteries were fresh, and the biggest hurdle, I had to find the courage to be truthful and admit it when I couldn’t hear.
TIP 4: Find a Way to Contribute to the Care giving
For much of the time after my sister was diagnosed, I contributed as a caregiver by cleaning and cutting carrots. My sister used juicing as a holistic method of combating her illness. We had a certain procedure for preparing the carrots to juice, which I carefully followed and did several times a week. It may not sound like it’s integral in the scheme of all caregiving roles, but it was a task my sister’s family relied on me to complete.
TIP 5: Minister to Other Family Members
When there is someone very ill to care for, primary caregivers can become tired or discouraged, though they may not say anything. Look for ways to brighten their day. For example, my five-year-old great niece went through a period of loving everything Spanish. As a former Spanish teacher that was right up my alley! I taught her several new words in Spanish. My “fun” teaching had a ripple effect. It cheered everyone up. Her interest and progress provided a new topic to marvel over.
It’s difficult to discover where a vision or hearing-impaired person fits into the caregiving network. It sometimes feels like you’re a puzzle piece that doesn’t fit at all. But experiment with your unique talents and skills so that you become a piece of the final picture. You can positively impact your loved ones during this period of time. And let me add, don’t forget your sense of humor when / if things go wrong! Your laughter might just lighten everyone’s dark day!
Have you been a caregiver? Or been in a situation where you weren’t sure how to help where a family or relative has suffered for an extended time period? Share in the comments below.