Zero

In my 19 years of caregiving, I've yet to meet a health care professional who referred me to help and support.

Think about how often family caregivers leave the health care system empty ended.

This realization dawned on me this week after writing about our struggles around help during our caregiving experience these past few weeks. I also started reflecting on my experiences with health care professionals.

I began helping my dad, who’s now 91, in 2004 after his bladder cancer diagnosis. He also battles skin cancer that at times covers the top of his bald head. I’ve attended countless appointments with him — appointments with his general practitioner, urologist, oncologist, kidney doctor, dermatologist and plastic surgeon. I sat vigil in his hospital room. I’ve held his hand in the ER while doctors attend to terrible skin tears after a fall. I’ve organized services for him through home health, palliative care and doctors who make home visits. (Last month, our local paper interviewed my dad, Roger, for a story about older adults connecting with high school students to share their stories.)

I also cared for mom for seven years until her death in August 2022. As with my dad, I attended countless appointments with her. I also sat vigil during her hospitalizations and organized services for her through home health, palliative care, doctors who make home visits, and hospice care. I’ve held her hand in the ER as we made difficult decisions about her medical care.

I consider myself to be an astute user of services for my parents. I ask, ask and ask. I follow up. I hear a no and then work my way through the system to find the yes.

This week, though, I realized that a health care professional has yet to offer me a list of resources that could support me.

I thought more about this after my dad’s visit to the Emergency Room this past Monday. He fell which always means he hits his head and has awful skin tears on at least one of his arms. As we sat in his ER cubby, we met with doctors, nurses and patient techs. They discharged my dad after cleaning and dressing his wounds and a CT scan confirmed he doesn’t have a brain bleed. But they discharged him without asking me: How comfortable do you feel changing his dressing? Who can be available to manage his wound care? Who supports you as you help your dad?

If I hadn’t already set up home health services, we would have left without any help. (I advocated for home health for my dad after he had COVID over Christmas.) Because of the services I’ve set up, we had a home health nurse visit on Wednesday and a nurse practitioner visit on Thursday who helped me change the dressing that stuck to his wound. (Yes, that’s awful.)

I’m always amazed at the lack of a simple process within the system that could truly help. What if the discharge papers my dad received included a suggestion to call the doctor to request home heath benefits and a flyer of caregiving resources just for me? (Of course, a referral to home health from an ER doctor would be optimum but I appreciate it just may not be realistic given the time constraints.)

I’m curious: How often has a health care professional referred you to help and support?

I’d love to know; please share your experiences in our comments section.

(Image by F. Muhammad from Pixabay.)

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Resources

• I created a Resource flyer that’s easy for doctors, health care professionals and community providers to share. Download our Caregiving Resources flyer and ask health care professionals to give to the family caregivers they serve. (Note: The link will take you the design I created in Canvas so that you can modify the flyer to include the resources you want to recommend.)

• If you manage caregiving and career responsibilities, register to join us on April 29 for A Morning for Support for Working Family Caregivers.

• Inspired to make a difference to support family caregivers? Register to join me on March 31 at 1 p.m. ET to create your caregiving impact.

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