What to say to Caregivers – Suggestions for Clergy

Editor’s Note: Nancy Hays was a caregiver to her husband, who recently died from Alzheimer’s Disease. She presented this at a recent seminar Rabbi Address attended in Philadelphia. Nancy is a member of Temple Shalom in Broomall, PA.

Caregivers are exhausted, worried, anxious, and angry. Most want to provide the best care they can for their loved one. This is a painful time for both the caregiver and their loved one and they need your support. They may not know how to ask for your kind words. They would like your words to be full of concern, and recognition of their courage in forging this new way of living. Here are some suggestions from myself and an Alzheimer’s Association caregiver support group. These suggestions are not listed in order of importance.

Depending where the caregiver and the person with Alzheimer’s is in the disease spectrum, will influence how you positively interact with them.

1. Validate that their caring for a spouse, parent, or child is the ‘right’ thing to do.
2. Give permission for the caregiver and loved one to experience negative emotions like grief, anger, frustration,
3. Ask how the ill person is doing by name – Not how is your husband or wife?
4. Their world becomes smaller and more isolated as the disease progresses and the caregiver becomes more anxious. Make time to visit both the caregiver and their loved one in their home, invite them for a cup of coffee/tea in the Temple or to attend a
5. If you cannot visit, call and ask to speak to the loved one. The caregiver will be touched that you reached out. You may be the only one.
6. Negate the thought that “I must have done something that angered God to deserve this situation”
7. This family is grieving not once with the diagnosis but every day. Be sensitive to this continuous grieving process.
8. The first time a caregiver speaks with you about their situation; ask what they need and follow through. They may not know what they need yet by reaching out to you they are asking for your support. If you do not know, say so and find out something. Call them back with this information. It could be a name of a congregant for them to reach out to or the alz support group phone number and email or an invitation to sit in the sanctuary whenever they can.
9. Remember your ill members and the caregivers on Shabbat on the Bema. They will know and it will warm their hearts.
10. Have the students make cards for them and other ill members of the congregation. There is a special sense of belonging to the Temple community when children reach out.
11. Encourage involvement of their children in this process. Parents want to shield their children (no matter what age) from this disease. Find out who wants to be involved and to what extent. Their children may be the caregivers or may be in high school.
12. Change the typical greeting “How are you” to “Welcome, I am so glad you chose to join your community tonight.” The question “How are you” is usually asked by medical personnel and acquaintances when they do not know what else to say.
13. Give permission to live and love ‘out of the box’ which may not be socially acceptable, yet works for where they are in the disease process and caregiving role.
14. End every conversation with courage and hope and touch. Most caregivers and their loved one need to know they are alive! Touch creates that connection. This is important since touch usually declines as the disease progresses.

Thank you for reading this passage. This list could be expanded. Please add your comments as they would help everyone.

Copyright ©2017 Nancy S. Hays. Reprinted by permission.