It is our time now.
I don’t know about you, but I did not spend my time at home during the pandemic learning a new language, craft or getting fit. I’m a caregiver. I was just trying to keep my head above water. On top of the isolation and loneliness, mom had two wounds that needed to be cleared up, a severe eye infection and the pièce de resistance, a five-day hospital stay. Yet, I persevered because that’s what we do as caregivers.
To my mind, if there is a silver lining in all this, it is how the pandemic highlighted (again) how broken our healthcare and our caregiver support systems are. I knew it and you knew it, and now the government and business community have been forced to take their heads out of the sand.
I for one am grateful. We may not agree on politics or intent of the infrastructure bill, but we have a unique opportunity to impact and improve our caregiving experience and the life of our loved ones. If we don’t name and claim the problems, we can’t change them. Claiming these problems requires being part of the discussion at the national, state, local and personal level.
On a personal level:
- Setting boundaries and asking for help is one way to advocate for yourself.
- Give yourself permission to be your own champion. Introduce yourself as a caregiver during a doctor’s visit and ask, “What resources are available for me?”
- Don’t ignore when you are drowning; reach out for help. Midway through the pandemic, I knew I could not keep it together and asked my doctor for a low dose antidepressant and started talking to a mental health professional over the phone.
- Educate everyone you meet that caregiving is so much more than the Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL) that are used to measure not just our loved one’s needs, but what we are called to do as caregivers. It is the emotional toll caregiving takes on us that is not measured and is not recognized.
As Denise Brown from the Care Years Training Academy so aptly stated:
“My ability to cook, do laundry and shop would never have prepared me for the day when my father received his bladder cancer diagnosis in 2004.”
On a local level:
- Contact your local Office on Aging. They will help you take advantage of services for which you qualify. They know the local adult day care, respite programs and caregiver support programs.
- Look online for national organizations that have a local presence, like the Alzheimer’s Association and tap into their educational and support resources.
- Check out online support groups like Smart Patients.
Once you start looking locally, you will quickly identify the holes in services and financial limits that allow so many of us who need help to fall through the cracks. This knowledge equips you to have a voice at the state and national levels.
The toll of being locked out of nursing homes, assisted living and rehab facilities during the pandemic has resulted in legislative calls to action at both the state and federal levels. What needs to be pushed in addition is payment, counseling and respite for essential family caregivers who give up working and their own lives to keep their loved one at home while caring for them.
On a national level:
- The Office on Aging will know of any state initiatives for caregivers. For example, New York and Washington have legislation pending that will improve the life of caregivers.
- Join Caring Our Way and keep up with the work of Denise Brown and Certified Caregiving Consultants. In August, Denise will be launching a twitter account that will share advocacy updates: https://twitter.com/CaringAdvocates
- Check out Working Daughter, founded by Liz O’Donnell who started this group out of frustration with her parents’ doctors. “We need much more recognition from medical professionals that caregivers are part of the care team.”
- Subscribe to Daughterhood.org, founded by Anne Tumlinson. Anne is an expert on health and aging, educates caregivers on elder care systems and speaks to policymakers on the challenges caregivers face.
- If you are new to public policy advocacy and activism, consider joining the AARP Public Policy Institute. To get started: https://twitter.com/AARPpolicy
- If a loved one is living in a facility, join the Facebook group devoted to The Essential Caregivers Act (H.R. 3733). This is bipartisan legislation that would give nursing home residents the right to have access to two “essential caregivers” to provide care, support and companionship during any public health emergency: https://www.facebook.com/groups/CaregiversForCompromise/
- Let your state representatives know that you are a constituent and support the current caregiver legislation. If you are new to activism, here is an easy way to find and contact your state representatives: https://www.usa.gov/elected-officials
- Let your national representative and congress know how broadening the definition of “infrastructure” to include a provision for in-home care as part of the American Jobs Plan will benefit you. If you are new to activism, here is an easy way to find and contact your legislative representatives: https://www.usa.gov/elected-officials
Believe me, I understand that adding one more thing to your plate might feel like your head will explode. But in seven years as a caregiver, I have never seen such a willingness to discuss the lack of infrastructure and support for our hidden population. If each one of the 59 million of us reached out to one state and one federal representative to let our voices be heard, it is powerful. Now is the time to advocate for ourselves and be part of the solution.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
Deb is the author of “Your Caregiver Relationship Contract.” This book explains how to have an intentional conversation and the how unspoken expectations can cause problems. Click here to learn more about Your Caregiver Relationship Contract.
