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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.

The family knew all the logical reasons why mom needed to live in a nursing home. We stated those reasons over and over to each other, to others, and even to mom: Mom is safe here. Her needs will be met. There are nurses readily available to assist her. Her husband can no longer care for her at home, but he can visit her here since it’s nearby. She will have contact with more people. There are lots of activities and planned special events here. This is recognized as one of the best nursing homes in the U.S. 
But none of our arguments convinced mom. All during the seven years she spent in the nursing home, she just wanted to go home. And we couldn’t make that happen. As her hospice chaplain said, “She never liked it in the nursing home, but she worked hard at accepting it and tried to be as upbeat as possible.”
When I visited her weekly, she was mostly positive and certainly appreciated my visits. In contrast to many around her, she was mentally alert, and we would do crossword puzzles together, read novels, talk, and look at photograph books. She also enjoyed the extras of a manicure and a facial. I enjoyed being with her. All my life she taught me by words and example that teaching and learning continues right up to the minute we die.—Karen

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.
Susan Cook is another resident of a nursing home. She is an inspiration to all who know her. I met her because she was seated at my mother’s dining table. Susan always has a smile, a positive attitude, and some inspiring thoughts to share. She is an interested and interesting person—always with several worthwhile projects going. She organizes efforts to care for troops in Iraq, arranges simple bouquets and delivers them to individual rooms at the nursing home, visits other residents who are going through an especially difficult time, raises money for the CROP walk, promotes this caregiving book—and the list goes on. Susan is in her early sixties. She has MS, and came to live at the nursing home twelve years ago when she could no longer walk because of a brain aneurysm.

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.

Books and Other Resources

Berman, Raeann and Bernard H. Shulman, M.D. How to Survive Your Aging Parents (Chicago: Surrey Books, Inc., 2001). Provides crucial insights into aging and the attending problems that affect relationships between elderly people and middle-aged “kids” who love them and are responsible for their care.
Kirkwood, Neville A. Pastoral Care in Hospitals (Harrisburg, PA: Morehouse Publishing, 1998). Bringing comfort and concern to the bedside (or chairside) of someone who is sick or dying is difficult for lay people and clergy alike. In this practical guide Kirkwood shares his wisdom as a hospital chaplain on the art of visitation. He guides visitors through the temptations they face—attempts to problem-solve, to talk too much, to be too personal or not personal enough—and provides a theology of visitation that can guide their efforts to help patients and friends.
Simmons, Henry C. and Mark Peters. With God’s Oldest Friends: Pastoral Visiting in the Nursing Home (Mahwah, NY: Paulist Press, 1996). A valuable resource for all pastoral visitors—both clergy and lay. Topics include old age, terminal illness, Alzheimer’s, the use of ritual and sacrament, and empowering nursing home residents to engage in wider ministry through prayer or letter writing. 

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