I am so glad to have discovered your Substack, Victoria, as we grapple with similar issues as carers with of course differences as well, since you are in the UK with a greater (if still insufficient) government support system and I am in the U.S. (which offers close to zero support for unpaid family carers unless you are impoverished enough to qualify for Medicaid). We also differ in that I am longer my mom's full-time live-in caregiver, and I so admire and understand what that takes. I did that hands-on caregiving 24/7 for 10 months. Having her move in with over a year ago followed immediately and unexpectedly choosing to end my long marriage (she fell within weeks of my moving out). And so now, I was a full time caregiver for my mom with suddenly diminished physical capabilities and dementia that had gotten worse during her time in hospital and rehab. The situation gave me no space--physically, emotionally, practically--to rebound from that life transition as i was her sole caregiver except for a few hours a week my sister came over. But I love mom dearly, we have always been close and for that year I thought, this is what a good daughter does. But working from home full time, trying to cope with being suddenly alone after 33 years--my choice, but nonetheless, a lot to process--and caring for mom who was now incontinent in all ways, eating little, and had two incidents requiring paramedics to come (a fall where I couldn't lift her up and a vagus vasal fainting incident that I thought was a stroke), I realized this was a lot to cope with, more than i could handle. My quality of life was declining alongside hers. Fortunately Mom had resources and could move into memory care just 15 minutes from me. She is getting good care and I am now back to being able to care for myself, too. She is fortunate in that she had private financial resources to afford this facility. Many people have no choice. So thank you so much for offering so many practical resources for us carers!

Expand full comment
Jan 15·edited Jan 15Author

Hi Amy, (techy issues on my comments!) heartfelt resonance and BIG empathy. Thank you for sharing so much of your journey. Dad had vascular dementia amongst a myriad of other health issues, like bladder cancer and congestive heart failure. You'll see more of my story unfold in the Carer Mentor Journey section of the Website. I hope the Carer-focused sections of Resonance and the CAPE resonate with your experience and that you take away more empathy from those. Over the years, I journaled and researched not just as a Carer but also during my commercial career, so I hope the Mentoring section - hub of resources can support anyone experiencing life transitions. Thank you for taking the time to comment, Amy, I really appreciate you connecting. I hope other Carergivers will also join in so we can grow Carer Mentor as a welcoming supportive community. Very Happy you're here on the journey!

Expand full comment