Editor’s note: Amy Boviard’s sister passed away this week and she asked that we share this post as a memorial to her sister who has just ended a long journey with illness. You may want to read other posts in our caregiving series.
Amy
Many of you are visually impaired and/or hearing impaired like me. (I have retinitis pigmentosa (RP) and Usher’s Syndrome, a condition in which people with RP gradually lose hearing.) 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 and even more so 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 to encourage you should you face a similar situation:
Tip 1: Try Prayer or Meditation
Prayer has been a great comfort to me. It might not be the answer for you, but you don’t need special sight or hearing to pray. What do I pray for? Healing, reassurance for family members as they cope, peace, for yourself. Also, scripture,special poetry, or meaningful writings may help you and others get through this period and 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 Caregiving
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.
Where Do I Fit?
It’s difficult to discover where a person who is visually and/or hearing impaired 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 and if things go wrong! Your laughter might just lighten everyone’s dark day!
This post was originally posted on Amy’s Adventures.