Good morning (afternoon, evening, or night) to all our wonderful caregivers here on Mayo Connect! I want to open this post with a hearty three cheers to you all! You are never far from my mind and I apologize for not having been more communicative than I have recently. In December I suffered a stroke, which has stolen some of my right side utilities, but I am adjusting, back in the saddle, and will continue to focus on staying in better touch with all you great caregiving folks who are doing yeomen's duty with your patients!
I recently finished an interview on the value and values of Connect and that has me thinking back to why I first came to Connect and what it was I hoped to find here. I came to Mayo Connect to fight my feelings of isolation and the terrors of caregiving. I remember thinking at that time I must be the only person experiencing all I was trying to manage. So I reached out and looked for something online for caregivers since the only time I had to myself was usually around 2 in the morning. Connect to the rescue!
As you all know, caregiving changes each of us in a variety of ways. In my opinion no one can be a caregiver and not be changed by the vastness of what
we experience, learn, stumble upon, and most of all accomplish as we refocus our lives towards our treasured patients. While I will most likely never get to the point that some folks say in articles I read that 'caregiving was the best time of my life', I can say caregiving for me was more like that famous (at least famous to a grizzled old guy like me) Clint Eastwood movie. I lived "The Good, the Bad, and the Ugly".
Many of us caregivers are thrown into our role with little to no warning, with no employee manual, no job description or pay, and precarious support structures. As we wade deeper into caregiving we are often confronted with feelings of helplessness, loneliness, inadequacy, short fused, and with many mixed emotions as the realities of our new job become more and more evident. In my case one of the other feelings I had to carry, try to work though, and eventually simply accept was the fact those I anticipated or hoped would be at the ready to support my wife and I in her time of illness were not to be found in my new world — and I do believe caregiving is a world all its own! I have been helped in this part of my journey by the fact my father was an alcoholic and I went though portions of his treatment program multiple times, attended AA meetings, and still to this day, decades later, attend Al-Anon. While I know the 12 Steps are not for everyone, I found myself using them to help me manage my life as a caregiver. I am still working through Step Nine.
I still find myself wishing there were more places, as Mayo Connect is, willing to allow the real voices to be heard of those who are in the great majority of caregivers and not just giving voice to the stories of the .01% who have employers who pay them full pay while a caregiver, offer full benefits on leave, or have unlimited wallets allowing them to provide support to their loved ones, which most of us mere mortals can never ever hope to no matter how much we wish we could.
I also believe, as a caregiver, how I am processing the grief I am living over the loss of my wife differently than many non-caregiving folks process grief. (Terrible sentence, but I hope you get the idea.) Plus certain aspects of it continue to come into my life, such as our adult daughter just now finding her voice to discuss with me some of her deeper anxieties, doubts, and pains over the loss of her mom. One thing she did tell me was she was forever grateful I spoke with her about signing HIPPA forms with her mom so she was able to speak directly with her mom's medical professionals during her long war with brain cancer. It was an uncomfortable, dicey conversation, but she just made it all worth the discomfort of the time.
I've gone on far too long, but those of you here who know me also know I love to write and share about caregiving.
Again I hope this finds you all managing as well as can be hoped for and I will close with one of my favorite quotes, which is still taped above my desk.
From Mary Anne Radmacher it says: "Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow".
I'd love to hear how each of you are getting along at this time!
Strength, Courage, and Peace to all!