Caregiver Toolkit/Tips

In this section you’ll find words of wisdom from myself and other caregivers.  I’m hoping to give you tools to make you and your loved one’s life easier and to find links to others who walk in similar shoes.

I was a caregiver to my medically fragile daughter, Sophie, for 25 years. There were so many times I wished for wisdom when all that was there for me was the feeling of traveling alone.  Her rare disorder created some of this aloneness, but prior to the internet it was a lonely journey.

Let’s change that landscape together. If you are a caregiver seeking some wisdom, I hope you find it here. I welcome feedback and your own links to share.  My biggest goal is to find quick, easy tools for caregivers to take care of themselves. This is not intended for medical advice, to bitch about your horrible life, or that you found religion.  Fill your cup. Thanks for stopping by.

Those First Steps…

I’m retired… Not Really.

This is difficult to write.  How do you get friends, family, even strangers to understand that after 25 years of caregiving I am done with caregiving?  I need to make a living, like seriously, some thing that pays the bills and has benefits. I know this. But 25 years of caregiving without a paycheck is not what businesses want to see on a resume.

So I get creative on my resume.  I give deep thought as to what I really want to be. What I want to contribute to the world, what would feed me now. I have been fortunate to be an aide/sub at the local high school. These wonderful people have kept me afloat mentally, physically, and financially for a few years now. So grateful.

People freak a bit when I say I am interested in Hospice, in the journey of Death and Dying, in Grief and Bereavement. The connections I have made in the Grief Community leads me there- I want to help the caregivers as they journey through this part of living, dying, and afterwards with their loved ones. The western world for the most part does a bad job of helping in this portion of living.

Having been a part of the medically fragile world for so long, I see so many gaps in the care of the caregiver.  They are a stubborn group, facing unimaginable stress and trauma, but will do anything for their loved one’s peace.  They think of themselves last- even though they’ve been told a million times self-care is important, to put their mask on 1st, you can’t drink from an empty vessel, you can’t go on this way-what happens when you can’t do it anymore? But they do.  I did.  My body is completely falling apart.  I’m sure my mind is not far behind.

After the death of my sweet daughter, I spent time and energy trying to understand this journey.  I gave myself grace for a time, then out of necessity I worked.  Then Covid hit. Another pause. In this pause I spent a lot of inner work to figure out what I wanted to do. I volunteered at a Hospice, learning the ins and outs of the business as best I could from “teachers” who had walked my path before.

I am a Certified Grief Educator through the program by David Kessler. That name may sound familiar- he worked with Dr. Elizabeth Kubler-Ross. Dr. Kubler-Ross wrote a number of books, one of her most known is “On Death and Dying” and the 5 stages of death.  The stages have been changed and analyzed over the years; most importantly David Kessler has reiterated that the stages are not linear.  David has written books with Dr. Kubler-Ross, and since her death has gone on to be a prolific writer, speaker, and wisdom sharer regarding grief, trauma, and the dying.

I’m now an ordained Minister through the Universal Life Church Ministries. What does that mean? It means I can marry people, reside over ceremonies, and follow my desire to help people. While this is a future ability, it is not my current focus. I wish to help caregivers.  

I’ve worn many hats on this journey.  I’ve been a caregiver, yes, but so much more.  I’ve been a doctor/nurse, a teacher, an advocate, a mentor, a writer, a “McGyver”, a photographer, a holder of memories, an encourager and mostly a Mom. Time to take these skills to a new level.