What caregivers have to say this Family Caregivers Month - Caring Across Generations

What caregivers have to say this Family Caregivers Month

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November is National Family Caregivers Month, when we celebrate and uplift the family caregivers who do so much to take care of us while advocating for change. Though National Family Caregivers Month has been celebrated informally in the past, this year, President Biden officially designated November to “recognize the important role of our Nation’s family caregivers and thank them for the invaluable and instrumental care they provide.”

This recognition is long overdue, but certainly welcome for millions of our nation’s family caregivers. In light of this acknowledgment, and as this month comes to a close, we asked 12 of our Care Fellows to share what Family Caregivers Month means to them, what still needs to be done, and how they celebrate and thank the caregivers in their lives (including themselves!)

 

What does Family Caregivers Month mean to you?

“Family Caregivers Month is a time of celebration and acknowledgement of the caregiving role; a time to be honored and supported, and a time to shed a light on the caregiving life to the broader community.” – Jerri Brown, caregiver to her father

“I’m not huge on awareness months, but I do appreciate the extra publicity surrounding everyone who provides care.” – Julie Juchno, caregiver to her mom, dad, and mother-in-law

“It means that people recognize that family caregivers are essential and important.” – Michelle Grant-Williams, caregiver to her husband

“It means everything! I am thankful for those caring elderly and disabled family members. I also am thankful for those who have dedicated their lives to a career as a caregiver.” – Tasha Braggs Wilson, caregiver to her mother, Fayretta Braggs, who is 78 years young

“Honestly, it doesn’t mean anything substantial yet, except that I’ve been coming across inspirational quotes on social media. I still don’t know how having this month would actually benefit my family.” – Ruth Floresca, caregiver to her 24 year old son, Gideon, who was diagnosed with spastic quadriplegic cerebral palsy and epilepsy

 

President Biden officially recognized Family Caregivers Month this year. How does it feel for the government to finally be acknowledging family caregivers?

“AMAZING. Any time a person in power acknowledges caregivers, it feels like a win.” – Allison Breininger, caregiver to her husband, Sean

“Better – perhaps with attention we can get action to ease the burden for so many.” – Rev. JulieAnn Mercer, caregiver for her mother and others

“Hurray!” – Lisa Albrecht, caregiver to her life partner of 25 years

“Talk is nice. Action is better.” – Karen McMeans, caregiver to her husband

“I’ve never lived in a world where we were acknowledged. But when we are talked about it’s almost as if to acknowledge our existence but not our NEEDS. That’s not to devalue visibility, but whenever we are acknowledged I’d like to hear our needs acknowledged in that same breath. I don’t want horror stories or anecdotes that sit on the fringe. I want the majority of people to feel universally seen and spoken to.” – Alexandra Key, caregiver to her mother who has early onset dementia, her father who is facing his first symptoms of cognitive difficulties, and herself for multiple chronic illnesses

 

Even with increased recognition, our nation still has a long way to go towards supporting family caregivers. What concrete changes do you want to see in the next year for caregivers like yourself?

“I want more standardized language between states for various caregiving related programs. I think that the lack of standardized language, and policies, between states make it difficult to have a really impactful discussion, or action, at the federal level.” – Julie Juchno

“We need financial assistance with some bills, and more focus on self care for caregivers.” – Michelle Grant-Williams

“We need Family and Medical Leave policies without the prerequisite of having to work over 1000 hours before being able to access paid family leave.” – Karen Kwok, caregiver to her partner with recurring brain cancer, and a professional nurse

“I am advocating for Medicaid HCBS Waiver programs nationwide to include and increase access to “Caregiver Counseling & Training” supports. Although there’s a budget available for this in North Carolina, no one gets a clear answer from officials on how families can access this support. Too many other states don’t even mention “Caregiver Counseling & Training” in their HCBS policies. If our nation relies so much on family members to do the work of caregiving, support in the form of counseling and training should be a bare minimum standard and not require complex work to access.” – Victoria Chibuogu Nneji, caregiver to her sister and other relatives, formerly caregiver to her mother

“We need a stronger social safety net.” – Karen McMeans

“Pass Build Back Better and make the appreciation real with liveable wages, benefits, etc.” – Tasha Braggs Wilson

“A concrete change I want to see in the next year for caregivers is livable compensation based on level of care and capacity.” – Jerri Brown

 

How do you honor the family caregivers in your life (including yourself)?

“Got my nails done!” – Rev. JulieAnn Mercer

“Trying to do yoga daily for personal health. Talking on the phone with friends for support.” – Karen Kwok

“I try to be patient and loving.” – Lisa Albrecht

“I honor my mother, the one who first cared for me, by doing my best to care for my family and to take care of myself. I have also been building a community of adult siblings of individuals with intellectual and developmental disabilities to share counseling and training support to confidently handle life together.” – Victoria Chibuogu Nneji

“My husband and his siblings are also caregivers to my mother-in-law. I likewise have a lot of friends here and in different countries who take care of disabled loved ones. We affirm each others’ sacrifices and hard work, try to offer whatever help we can (prayers, time to talk, offering respite, sharing of medical supplies, etc.), and share relevant information regarding benefits and useful resources.”  – Ruth Floresca

“I just came back from a rally for care in Washington, DC, and I’ve also been making calls to advocate for care. I am blessed to be with others who want to see caregivers thrive.” – Tasha Braggs Wilson

“I use my platform, The Negative Space, to shine light on the realities of caregiving every day. @negspacelife www.thenegativespace.life.”- Allison Breininger

“As a ‘recovering people pleaser,’ I’ve been trying to learn how to ‘consider myself.’ If I don’t make the time in my own life to consider my own feelings, wants, and needs, there’s no way I can ask that of someone else in my life or be resentful when someone doesn’t reciprocate care in the same way for me. Personally, as a Black woman, I can tell you the role of caregiver can be socially expected, but being good at something doesn’t make it your purpose or promise you fulfillment. To truly honor Caregivers, whether they be someone we care about or ourselves, I believe we have to remind them of their humanity and their whole being: the parts of themselves that have nothing to do with what they can provide. Let’s honor our caregivers by appreciating them for the whole being they are. Let’s consider them, so they may learn how to consider themselves.”  – Alexandra Key