Who cares for the caregiver? I found out the hard way. A few months ago I traveled toPennsylvania to stay with my mother for 6 days so that my father could have a break from 24 hour a day care. He had not been away from my mother overnight for almost 2 years.
Living with someone who has Alzheimers demands patience, persistence and fortitude. Things continually disappear, the same question is asked dozens of times a day, personalities become more negative, and personal hygiene is a challenge. Caregivers must remain healthy and strong simply to make it through the day.
I was having a great time with my mother until the evening of the 4th day. We went to my aunt and uncle’s house for dinner, and I brought along my mother’s arsenal of pills as well as a new medication I was taking. Unfortunately, I accidentally confused one of my mother’s Alzheimers pills with the one I was supposed to take. Even though it was just a tiny round pill, I remember thinking to myself, “Oh no, I can’t believe I took her pill. I hope I don’t get sick!”
2 hours later, after we arrived home, I began to feel terrible and started throwing up. Realizing I could not take care of myself, let alone my mother, I called my aunt, a retired nurse, who spent the night with us. I was still violently sick in the morning, so my uncle came over to be with my mother, and my aunt drove me to the Emergency Room, where I spent much of the day. Who cares for the caregiver? There were more calls to Gary in Michigan, my dad in Florida, and my 3 siblings, who came to the rescue by staying with us the following night and day. By all working together, we got through it, and both my mother and I were cared for.
25 to 30 million people in our country are primary caregivers. Caregivers are in all of our churches. That’s why it is critically important to understand the physical, emotional and financial toll that caregiving takes on people. Myra Smith writes in the February/March/April issue of Circuit Rider, our United Methodist clergy magazine, “Caregivers use more anti-depressant drugs than normal populations; their social lives are altered; and they experience symptoms such as arthritis, heart problems, insomnia, depression, headaches and other maladies due to their caregiving responsibilities.” (“Caring for the Caregivers; Ministering to the Sandwich Generation,”) They also mix up the pills at times!
Some people care for loved ones in their homes for years. Eventually, many caregivers reach the point where they have to put their loved ones in nursing homes but visit them every single day. Other times children have to engage in long distance caregiving, which involves taking vacation time, giving up weekends, the financial costs of travel, and losses in wages and benefits due to caregiving. More often than not, there is guilt for not being present with loved ones as often as they would like.
How can churches care for the caregiver?
Churches need to recognize the fragility of the life that caregivers lead.
- Caregivers assume the entire responsibility for their loved one, especially if that person does not have family nearby to help. I even remember saying to my Dad before he left, “Don’t worry about Mom. I’ll take full responsibility for her.” Foolish me! When I became sick myself, I had no idea what I would have done had I not been able to rely on relatives.
- Statistics show that caregivers often die before those for whom they care simply because of the stress and burden of providing 24 hour attention.
Churches need to understand the special needs of caregivers.
- They can’t get to church regularly, especially if their loved one is homebound.
- They can’t be as active in the church as they used to be.
- They can’t participate in social activities.
- They can feel isolated and disconnected from their church friends.
- Caregiving uses every ounce of their energy, so there is little time leftover for church.
Churches need to develop intentional support systems for caregivers.
- How about matching a church visitor with each caregiver in the congregation to provide regular contacts?
- Have you considered offering a support group for caregivers and providing care for their loved ones during the meetings?
- Have you encouraged caregivers to learn more about their role? In April and May, Clark Retirement Community offered a 6 week class called Powerful Tools for Caregivers. The class is designed to provide caregivers with the resources needed to take care of themselves at the same time as they are caring for others.
- The pastor needs to keep in touch as well. My husband Gary’s mother is caring for his father right now. Unfortunately, the pastor of their small UM church hasn’t visited them at all since they moved to an assisted living facility a year ago.
- How are you providing counsel to caregivers when they face the agonizing decision to move their loved one into a nursing or assisted living facility?
- Can you assist caregivers in finding respite care so that they can occasionally do something just for themselves?
- Can you find creative ways for caregivers to remain connected with the church, like being a prayer partner for a confirmation youth?
- Do you send birthday, anniversary and “thinking of you” cards to caregivers?
- Do you video your worship services so caregivers can view them on the church’s web site?
- Do you ever sponsor a special dinner or event honoring caregivers?
I admire and respect my father’s caregiving more than he will ever know. I am not sure that I could show my mother the same love and tenderness he demonstrates every day. My father has said many times that he is determined to fulfill the marriage vows he made almost 59 years ago to love, cherish and care for my mother at home as long as he possibly can.
As you read this, Gary and I, our oldest daughter, son-in-law and grandson, our youngest daughter and boyfriend, and my mother and father are on vacation together. Gary and I plan to spend special time with my mother and grandson Ezra so that their caregivers can do some fun things for themselves. And I promise not to take any more of my mother’s pills!!