From the Compassionate Congregation: A Handbook for People Who Care, by Karen Mulder & Ginger Jurries
I Want to Go Home!
My mother, Ruby Marie Wolfe, was a lovely woman who was admired and loved by many people who knew her. In 1999, Ruby’s mobility was limited when she suffered two strokes. She could use only her left hand and walk only with assistance. After her second stroke, this active, hard-working woman who had worked as a telephone operator for twenty-five years, who had kept a clean house and was a great cook, and who loved to laugh and tell family stories, could no longer take care of herself.
Wisdom for the Caregiver from Ruby
Do not “talk down” to older people or treat them like children. Please show respect for each person. I need extra help, but that does not mean that I am mentally slow. I have lived and learned for ninety years. I have opinions, likes, and dislikes. I am a person.
- I really like it when the aides take the time to cleanse my face and put on my creams. Sometimes they also fix my hair and make sure that I look my best before going to mealtime.
- One of my favorite events is when my daughters and husband take me out for a ride and for a meal. I also really like to go to my daughter’s house for a few days. Because of my condition it is a lot of work for my daughters, but it is wonderful to be in a real home again with home cooked food, open spaces, activity, and family stories.
Wisdom for the Caregiver (from Ruby’s daughter, Karen)
- When you approach the nursing home, remind yourself that there is nothing more important for you to be doing right now. Try not to be in a rush. The person will sense immediately if you are anxious to “get this visit over with.” It helped me to remember that my purpose was not only to be a loving presence to my mom, but also to express love to Jesus: “When you do it to the least of these, you do it to me” (Matthew 25). Living out this verse brought more joy to my visits. When I walked down the halls, I would try to treat each person I met with respect because when I said hi or held a hand, I was doing it to Jesus.
- Remember the power of touch. Hug, kiss, rub or pat the person’s back; massage her hands with lotion; or hold his hands. Touch often communicates more than words. Even individuals suffering from dementia and Alzheimer’s feel and know the message communicated by a loving touch.
- As a caregiver you are not there to fix the situation. You can’t. Caregivers ask, “What should I do when the person cries or is sad all the time?” You are doing what you can by being there. Hold the person’s hand. Cry with her. Say what’s in your heart: “I’m so sorry that you feel so sad. It makes me sad too.” Or “Oh, how I wish that you could be at your home.” See “Words That Help,” pages 254-257, for other responses.
- Mom’s prayer request was usually the same, “Pray that I have patience.” I am sure that when you need assistance to move and turn on the light, waiting and watching makes three minutes seem like fifteen minutes. Gradually, I learned to focus on what she was thinking and feeling instead of trying to defend the busy aides and nurses. I would try to reflect her thoughts and feelings by saying, “You sound very upset because you need a drink of water or need to use the bathroom and no one comes to help you.”
- Once every three or four months there was a care meeting at the nursing home that included four or five staff people and mom and me. Prior to the meeting I learned to ask mom what her frustrations were, and then we would share them with the staff at the meeting. They listened, and usually would take action. (The staff and aides are very busy and care for many people, so caregivers need to act as their loved one’s advocate.)
- When the person is sad, ask what things used to bring them joy. Their answer may give the caregiver some ideas about activities they could do together or provide topics for conversations.
- Conversation Starters: See “Telling Life’s Story” (pp. 34-37). Center on a few questions each time you visit. Record the answers on paper or use a recording device. Eventually you can duplicate and share these stories and memories with members of the family. At major bookstores you can also find journals with questions about one’s life and spaces for the responses.
- A one-minute phone call can bring unbelievable joy to a person who does a lot of sitting and has to cope with a lot of silence and loneliness. A phone call from a loved one can be the highlight of a person’s week!
- Individuals look forward to mail delivery time—send a note or a card!
- Sometimes it was difficult to think of special presents to give my mom. One Mother’s Day, I bought a poster-size frame and arranged pictures of mom’s children, grandchildren, and great-grandchildren in collage form around a 5x7 picture of mom. I added the caption “Mother and Grandmother.” I also included Proverbs 32:28: “Her children rise up and call her blessed.” This collage became a focal point and a conversation piece as nurses, aides, and visitors would stop to look and ask her questions.
- Ruby also enjoyed giving. Before holidays we would purchase a variety of treats, and together we would assemble attractive bags of goodies that she gave to aides, nurse, and visitors.
- One of the most important issues for older people is wondering “Did my life make a difference?” In preparing for mom’s eighty-ninth birthday party, my sister and I asked all members of the family to write her a letter sharing a special memory and describing what they especially admired or liked about her. We saved these letters in a photograph book filled with pictures of her life. During the last year of mom’s life we often opened the memory book. She loved to look at pictures of her family and become absorbed in the world of remembering special times, places, and people. During the last weeks of her life we read the tributes to her. Even though she could no longer communicate much, she would smile and have the most heavenly shine on her face.
- Children are welcome guests at nursing homes. Whenever a baby or a small child arrives, everyone wants to touch and talk to them. Frequently my two nieces would come with their mom to visit Grandma Wolfe. They brought smiles and pleasure to her and to others.
- Try to imagine what it would be like to be in the person’s situation. What would you miss? What would you want a caregiver to do? Imagine—and then do it.
- For additional wisdom for caring for individuals in nursing homes, see the following sections: Aging: pages 25-37; Alzheimer’s Disease: 44-51; Illness, Visiting Those Who Are Ill: 161-164.
- Review section 2, “Caregiving Basics,” pages 231-250.
- Check for ideas in “109+ Ways to Say, ‘I Care,’” pages 251-262.
Wisdom for caregivers from Susan Cook
- Music can soothe the soul and bring peace and joy. There would be less agitation and yelling in nursing homes if each room had peaceful music playing most of the time instead of a blaring TV. This could be accomplished over a PA system with an on/off switch in each room. Or families could bring a CD player with a few CDs and request that aides turn on the music in the person’s room instead of the TV—unless, of course, the person wants to watch TV.
- People want to make a difference. The same is true with residents here. So they take a lot of pleasure in bringing me their straws at each meal. I collect these and give them to the Salvation Army. (Karen’s note: It is wonderful to see the residents’ pleasure at giving up something for someone else. The minute they see Susan wheeling into the dining room, individuals make their way from all around the large room via walker and wheelchair to Susan’s table.)
- Allow the person, whenever possible, to make his or her own decisions. Well-meaning family and sometimes staff decide what the person needs without consulting the individual. For example, when a lovely woman in her nineties complained about being cold, her niece “solved” the problem by moving her aunt to another room. The aunt was not consulted. She didn’t like the move, and her previous roommate grieved the loss of her friend.
- My room is my home. Please do not come into my small home and tell me that I should take care of the clutter or start organizing or offer to organize my things. I know where everything is. I can reach what I want from my wheelchair, and I don’t want things moved.