Support for the Caregiver
by Joyann Dwire
After Mom passed away, I became co-facilitator of my church’s caregiver support group and discovered that what I had endured with my mother was not unique. In fact, many participants were dealing with more hardships than I had.
Often the stress of caregiving was compounded by a lack of support — or worse, antagonism from family members. They may or may not mean well with their words or actions. Often friction stems from a family member’s lack of information or understanding of the situation.
The primary caregiver takes the brunt, not only of the work and heartache but also of the frustrations and anger of the patient. You can provide what the caregiver needs to get through this difficult time of life.
Allow me to offer some do’s and don’ts. (To simplify things, I’ll refer to the caregiver as “she” and to the patient as “Mom.”)
Do’s and don’ts
Do give the caregiver a break. If she has a job, going to work isn’t a break. She needs to get away. Send her to a nice restaurant while you sit with Mom for a few hours. She may need a full getaway for a few days or a week. The stress and depression are real. What will happen if the caregiver gets sick?
Do provide understanding. The caregiver needs to feel that she’s being heard. It’s tempting for others to offer unsolicited advice. If a family member isn’t there every day or involved in her care, they may not see Mom’s physical or mental decline, so they have no factual basis for their advice. The caregiver can benefit much more from a listening ear.
Don’t accuse the caregiver of exaggerating what’s going on at home. Even if stress causes her to perceive the situation as worse than it is, that’s what stress does. And the stress has a source: caregiving.
Don’t think that in the few minutes you see Mom every week (or however many times you come), you are seeing the full extent of her illness. Dementia patients are infamous for appearing to the casual observer as perfectly fine, at least in the early stages. In many cases, Mom will be on her best behavior in public or when visitors are present.
Do make memories. It’s tempting to want to remember Mom the way she was. The caregiver wants to. While there is life, there are memories to be made. My family will always remember my mother’s two-and-a-half-year-old great-granddaughter coming with her mom to “help.” Her job was to raise and lower the bed. I also have memories during Mom’s illness of when she said something funny or sounded like her old self, and I would think There she is! Look at old photos with her. If she can get in the car, take her for a drive or out for ice cream. Listen to the stories you’ve heard a hundred times before. One day you’ll be telling your grandchildren about Grandma.
Do recognize the grief. Your family caregiver is grieving. She doesn’t have to wait for the funeral. For me, the grief process began the day Mom had her stroke. I knew there was no coming back from this illness. Likewise, the caregiver knows that the mom she once knew is gone.
Loving family members have empathy for the caregiver. They help and support her, even when it means just listening or offering a shoulder to cry on. And sometimes that is exactly what the caregiver needs.
A word to church families
In my role with the caregiver support group, I saw that Christians seem to be at a loss to know what to do. Have a death in the family? We know how to handle that. And indeed, they rallied around me after Mom passed. It’s during life that they seemed to be uncertain.
The answer is simple: Every exhortation above applies to you. One Sunday, when Mom could still attend church, I had just sat down at the organ for the service to begin when Mom stood up to go to the bathroom.
I was about to stand up, but our associate pastor’s wife waved me down. She pointed to the organ. “That’s your job.” Then she indicated Mom. “This is my job.” She will never know how much I appreciated that gesture.
Please get involved, church family. That’s what you are there for!