As I described in a recent article, I spent ten years living with my elderly parents to assist them as their health failed and their physical abilities declined. I wasn’t alone in helping them, but had considerable assistance. This article will be about reasons for getting additional help, my experience with caregivers, and suggestions for those who have a spouse, parent, or other family member who might benefit from having someone provide care. Sharing the responsibility of caregiving with other family members or with outsiders can not only insure that no one is too burdened but can also improve care by utilizing a variety of people’s gifts.
When a physically or cognitively impaired adult can’t function adequately on their own, a spouse, child, or other family member is usually the first to recognize the problem and give assistance; according to a joint survey by AARP and the National Alliance for Caregiving, 89% of informal, unpaid caregiving is done by a relative. Care may be given by a spouse (12 percent) or adult child (6 percent), but the most common type of caregiving arrangement is parents caring for an adult child (50 percent). Slightly over one in five adults serves as a caregiver for an impaired adult.
If the need isn’t great and a single family member can easily provide the necessary assistance, there may be no reason for getting additional help. However, a single caregiver often can’t or shouldn’t provide all the care that’s required. The need may be too severe, as in cases such as moderate to severe dementia or inability to dress, bathe, or feed oneself. The caregiver may have other commitments that keep him or her from spending the time necessary to give adequate care. The caregiver may have significant limitations of their own, such as insufficient strength or health problems that reduce capabilities. There may be specialized needs that require professional expertise. Or the demands of caregiving may be too stressful or demanding for one person to handle. In the survey described above, 36% of caregivers reported that being a caregiver caused high stress (4 or 5 on a 5 point scale).
Some caregivers who try to do more than is wise believe that it is their duty to wear themselves out and that God will be displeased if they hold back. In contrast, God directly intervened to redirect and assist a prophet who tried to do too much (I Kings 19). Jesus left the crowds to be refreshed by time alone with his Father. The writer of Ecclesiastes recognized the wisdom of not trying to do everything by oneself:
Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. (Eccl. 4:9,10a, NIV)
When my dad developed dementia, my mom and I shared much of the responsibility of caregiving. I provided help with bathing, dressing, and self-care, while mom did laundry, cooked, and sat with him quite a bit during the day. Even at the beginning, we had some outside assistance. For example, we arranged for Meals on Wheels to bring in food that was already prepared. After about a year, dad’s needs increased to the point that we decided to get additional help through a private agency that supplies aides. This wasn’t covered by dad’s insurance, but we were able to get some assistance from a Veteran’s Administration program that helps wartime veterans with medical expenses. Having help most mornings worked well for quite a while, but, eventually, the need got to be more than we could handle at home. Dad spent the last 3 months of his life in a memory unit at a nearby nursing care facility.
The progression was similar with my mom. For years after my dad’s death, mom did well with just a little assistance from me. I could even be away for a few days at a time. Eventually, though, her physical limitations worsened and she needed more help. She then had in-home nursing, PT, and OT to address a variety of issues. We again turned to a private agency that provided capable and caring aides 25 hours a week. I worked and ran errands during those 25 hours so that I could be available whenever the aides weren’t there. At one point, I had a 10 day trip scheduled; my sister was able to step in then and stay with mom. Mom didn’t qualify for hospice until the last couple weeks of her life, but, when we were able to get their services, they were invaluable in managing the pain and discomfort mom felt as her body shut down. She wanted to die at home in her sleep, and was able to do so.
What did I learn from both my dad and mom’s care? I learned to take care of myself and, when my mom shared in caregiving, encourage her in self-care as well. I learned that I sometimes don’t know that I need a break until I get a break. I learned that I don’t always know what to do and have to rely on the expertise of others. I learned that I’m much more patient and available when I’m not feeling overwhelmed or trying to do too much. I learned that having a good match between outside caregivers and the person needing assistance is important. Neither dad or mom connected successfully with every caregiver who came through the door, but did well when we found someone whose personality and approach matched what they needed. I learned that there are dedicated and caring people who devote themselves to providing assistance to those who can’t care for themselves, and the help they provide is a tremendous blessing.
Every family situation is different, and our approach is by no means a model that everyone else should follow. If you have an adult family member in need of more care than you can provide, though, I encourage you to try to arrange additional help either from within or outside the family. Having assistance reduces the demands on you so that you can be engaged, warm, and available during the time you spend with the family member needing care.
Rev. Dr. Steven Koster
Rev. Deb Koster