parenting and career mode when their parents begin to need additional care. Many of them are already privy to the realities of the family caregiver role. Their parents are Baby Boomers who have had the wild experience of raising a new generation while caring for the one that came before them. They are now left with the question, “Who’s going to take care of me?”
The Caregiver for the Caregiver
Many caregivers are so busy taking care of their parent or loved one that they have either forgotten to or chosen not to take care of themselves, leaving their spouses, children, other family members, and even friends to step up and help take care of the caregiver’s needs.
While this attention may not be as physically demanding as what the caregiver is providing for the older adult, these assistants to the caregiver work in several other ways. They provide emotional support and will spend most of their time listening and allowing the caregiver a safe space to vent. They assist in researching resources and support networks in the community. They understand their time with the person will change due to the scheduling constraints that accompany caregiving demands.
The assistant to the caregiver will most likely see it all and provide the bulk of the emotional support without receiving much reciprocation. Caregivers will spend all their time and energy on their loved one’s care so that, too often, they have little left to give to other loved ones in their lives. It can be challenging to strike a balance when in the throes of caregiving, but the support you are providing them does not go unnoticed.
It Takes a Village
Caregivers are our neighbors, our coworkers, our friends, and our families. They carry on each day with the needs of their families and their loved ones on their minds. Caregivers are a part of the fabric of our society, which is essential to acknowledge for two reasons: 1) You, the caregiver, have representation and validation that you are not alone in this journey, and 2) our society sees the needs of our caregivers and can provide them with structural support. Caregiving needs are wide-ranging and rapidly changing today, and government agencies, businesses, non-profit organizations, and community members not only recognize these needs and changes but also are in the process of changing the way they do business and offering a host of resources and services for our care recipients.
I heard a recent news story about a small-town family whose son uses a wheelchair. Their community park installed a wheelchair-accessible swing, and the mom made a comment that resonated. She said it had been mainly up to the family to make the world available for her son, which meant everything from walking/wheeling down the street to recreational pursuits so her son could have a fun childhood. An image of her son and the rest of the family laughing and smiling around the swing set spoke strongly of the joy that this intervention had brought to this family. Because this community chose to install an accessible swing, this mother didn’t have to explain to her son why he couldn’t play in the park like all the other kids. She didn’t have to figure out another way to have fun outdoors with her family. Because the town took the initiative to provide the structural support, she didn’t have to adapt and could enjoy a playful moment with her son.
While this example speaks to the needs of a younger generation, I believe the situation is the same for older adults as well. Our communities and businesses have an excellent opportunity to design for the needs of older adults because, when you plan for them, you benefit everyone in the community. Efficiently designing for older adults requires design thinking because it is crucial that thought, empathy, and emotion are incorporated into the design. An efficient design will allow an older adult to continue to age independently and help them feel safe and secure in their surroundings.
Making the transition to an age-friendly community can be a process. However, there are relatively small-scale design features a city can implement to get the innovation process started. Like the accessible wheelchair swing, brightly painted crosswalks, wheelchair access on every street corner, and handrails along walkways are just minor changes communities can make to keep older adults and their caregivers active in their community. Caregivers, too, can play an active role in the shift in design for our communities. If your loved one needs a wheelchair ramp on their street corner, then consider calling your neighborhood associations or advocating on their behalf at your local town hall meetings. Notifying community organizations, businesses, government, etc. of the specific needs is the fastest way to see changes.
Over the past fifteen years I’ve witnessed a shift in this direction—a shift that recognizes the needs of caregivers and offers support to help you provide the best care to older adults. There are resources and people out there advocating on your behalf and I am encouraged by the progress, but we aren’t all the way there yet. Not all communities offer fair pricing for adult day services or respite care, and we haven’t really talked about caregiving on a personal one-on-one level. There are ways to maintain other relationships while caregiving, and it is okay to say you can’t provide care today.
As an activities professional, I worked with individuals living with Alzheimer’s disease or other forms of dementia on a daily basis. I had to learn non-medical ways to intervene for each when they started to become upset or anxious. Designing a caregiving plan that would benefit the individual while reducing my stress and worry about them was essential to my ability to provide a good quality of care and a good quality of life to each resident. Over time, I learned what worked and what didn’t work, and I soon had many tools in my “arsenal” for each resident I worked with. These tools are what you, the family caregiver, are left to figure out on your own; as you play many different roles, like nurse, aide, dietitian, and transportation and recreation provider, it is nearly impossible to create a cohesive caregiving plan.
You are caring for someone you’ve known for some time; they know you and trust you. You have memories with them that have created a foundation for the caregiving process. But your relationship with them shouldn’t have to take the back seat. Activities provide a fantastic opportunity to refocus your attention on the relationship with your loved one, and thus make the caregiving experience more manageable and less stressful. As you continue on your caregiving journey, it is important to recognize that you are not alone, and that there are resources and connections available to ensure that you are able to provide the best quality of care to your loved one. Don’t be afraid to explore your boundaries and decide for yourself what type of care you can provide on your own, and where you may need additional support.
Three Ways to Avoid Caregiver Burnout
No matter how you became a caregiver, the job has specific characteristics. It will require your full attention. It will take all of your emotional capacity. You will have to watch as your loved one declines in health and capability, but you will also be witness to a beautiful transition in the human life cycle. I’ve often equated the aging process to that of a butterfly. We traditionally view old age as a deterioration of life, but, honestly, it is not—the amount of love and laughter that older adults have still brings me a smile when I’m feeling down. Or worrying about my age. Despite being told that our later years are filled with decline and loss of independence, these individuals find a way to live life to the fullest and to find humor in even the darkest of times.
How does this help a caregiver? The general fear that our elders are actively transitioning from this life is a constant in the mind of a caregiver. This future mindset rips away opportunities to be in the moment with yourself and to grapple with the emotions you are experiencing. You are left to move through the motions without ever truly being given the chance to express how the caregiving is making you feel. Providing care to another person is a sacrifice, and it takes time to process everything you are witnessing, feeling, and doing. These are your loved ones. These are people you have spent time with, have built memories with, and who have no doubt taught you many of the things you know today.
