The Caregiving Conundrum

We are all born to be caregivers. At an early age, we learn to care for our toys, our rambunctious pets and yes, even our siblings. As we get older, we expand caring to our family, our friends, employees, and the community at large. We even care for our environment, which needs our help more and more. Caregiving is a role that affects everyone and statistics confirm that more than one in five Americans are caregivers to chronically ill disabled or aged family members or friends. * 

Yet, few individuals feel prepared and ready when our time comes. Regardless of our experience or our resources, the role can be an enormous challenge. The health care and human services system is difficult to navigate even for the most knowledgeable and tenacious person. It is fragmented, disorganized and inefficient. And, at the same time, we often balance other time-consuming tasks in our full-time jobs while raising our family. It is no wonder that this phase is called the sandwich generation, describing the caregiver being squeezed between the demanding responsibilities of caring for their family and their parents or other adults. 

 There are a few essential guidelines that can help and for which I have learned after years of both professional and personal experience as an advocate and health care provider. Caregiving can be a burden only if you let it, but it can also be an opportunity. 

First, learn to Delegate and ask for what you need. No one has all the skills, time or resources needed. This is why delegating and accepting help is the most important skill you need. Acknowledge that everyone has a role to play and they will do so if you are willing to ask for a specific task. A relative who lives out of state can call weekly or send a check for respite. Another reluctant relative or friend can drop off a home-cooked meal. Most people want to get involved but do not know what to do and fear doing the wrong thing. In all families, there is always one individual who assumes the responsibility. A common error and a big mistake is that the caregiver assumes they have to do it all and when faced with others’ reluctance to help, accepts the martyr role and creates the burden. One of your most important jobs is to manage the care and manage others who can help. Ask and ask and ask again with specific requests until you can find a task that matches the individual’s willingness to do. This helps not only you but also the person you are caring for. Involving others in care adds variety to the often monotonous routine and enriches relationships.   

Secondly, and very, very important, is learning and practicing Self-Care. You cannot help someone if you are tired and burned out. Schedule exercise and respite for yourself. 

Thirdly, learn to Be Present. Accept your loved one’s reality and not where you want them to be. Find out what makes a good day for them and see that this gets provided. Is it feeling the fresh air and seeing the bright colors of autumn leaves? Is it music and reading? Engage where you can. This is a priceless opportunity. 

Fourthly, Advocate for your loved one and yourself and for others. Become a voice to change the system. Legislators need to be reminded that the system is broken and no one can tell your story better. Partner with advocacy groups and lend your voice. Push for higher pay for direct care providers who provide much-needed care in health facilities, in-home care and adult day health care. Advocate for higher reimbursement rates in Medicaid /Medicare for long-term care. Join a board that is working on this issue. 

And lastly, Celebrate small wins and find and give gratitude. Thank everyone for their help. It really makes a difference to show appreciation to others who are working hard for you. If you follow these steps, caregiving does not have to be a burden. While it is hard, it can also be an opportunity to deeply engage with another, make a real difference, play a part in something bigger than yourself, and become the person you are meant to be. 

*Caregiving in the United States 2020, AARP, National Alliance for Caregiving, May 14, 2020 

Guest Blogger:  Lynne K. Seward, LMR ‘92, retired CEO of A Grace Place and leader in serving those with physical, developmental and age-related disabilities. 

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