** those following along the last few months know who Morpheus refers to… for those who don’t it is how I refer to my psychologist in my blog posts describing my experiences in talk therapy
One of the main benefits of social media is that it allows people to connect, to draw on the joint experiences of a multitude of individuals that have something in common. Be it diabetes, cooking, or bottle caps there will be someone out there blogging, posting and/or tweeting about it.
As the months passed being mom’s caregiver, I found I needed support from others in similar situations. So I turned to social media and twitter. Looking for a chat somewhat like the #dsma (Diabetes Social Media Advocacy) chat that occurs every Wednesday at 8pm Central.
I found one that seemed right, #eolchat (End of Life chat), that seemed promising given that, at that time, mom’s prognosis was only a few months. It also seemed to fit my relationship with death. I learned when I was very young that I was going to die by the time I was out of college. I had Type 1 diabetes and, in 1970, that was just the prognosis. I don’t remember anyone actually telling me that; it’s more of an impression gleaned from overhearing conversations that the grown-ups didn’t think I was paying attention to.
I went into this chat looking for perspective on what might be going through mom’s mind more than looking for support for myself. I found that support there as well, but started noticing that some of the thought processes that the patients were describing mirrored much of what my own thoughts had been while I was waiting all these decades to die.
I think that perspective may have been what made it possible for me to tell the palliative nurse that it was time to let dad pass. Mom and all the children were there and had agreed that it was time, he had been unresponsive in ICU for nearly three weeks and the neurologist said that he was brain-dead. Two doctors agreed that he would never be able to return to any type of normal life.
That was something dad did not want, he did not want to lie there in a vegetative state. The DNR (Do Nor Resuscitate) order was posted and, after everyone said goodbye, we decided it was time, but no one moved towards the door. After a couple of minutes, I just stood, quietly walked over to the nursing station and told them it was time.
I also think it gave me an odd perspective among the care-givers. I wasn’t worried about my mom’s death as much as I was about her experiences leading up to it. She and dad had established living wills and advanced directives back in the ’90s, we knew what their wishes were at the actual event. I wanted her to have dignity.
The moderator/creator of the #eolchat is Dr. Ann Becker Shutte. We were following each other on twitter and got to know each other a bit, as often happens there. I kept coming across her tweets in various chats I was in and liked how she approached topics such as chronic illness and death. Luckily for me, she is in the Kansas City area and one day I decided it was time to work through some of these issues. Social media, it turns out, is not without a sense of irony… oh wait… helped me find much more than fellow patients & care-givers.
At the time, I was numb… past the point of exhaustion. I was barely getting through each day, it was stressful as a live-in caregiver and I did not want to end up resenting mom for needing someone there to make sure she was safe.
I sent Ann a DM one evening and the rest is history, most of which is documented here through out my postings in 2012. At our first meeting, she did most of the talking, telling me about the usual paperwork things and her social media policy.
A psychologist with a social media policy. One that actually let her be an active participant in things like tweet chats. As I’ve seen over the last few years, there are remarkably few HCP’s actively participating in social media, usually citing privacy concerns.
The ones that do take part seem to be exceptional individuals, communicating with patients and peers. And accepting patients as peers.
Ann places the utmost value on patient privacy, even saying that she would not even read my blog if I didn’t want her to. I had told her that I was planning on blogging about it, so to go on and read them. Sometimes those posts help raise issues that hadn’t really come up before, but needed talking about.
It turns out that I was the only patient/client that she had not un-followed on twitter, which didn’t bother me in the slightest. Whether I was some wacky experiment or she saw the benefit for me to be able interact with her (and maybe vice-verso), we may never know…
We both attended the Partnership with Patients and Health Ca.mp KC event in September, so it was kind of funny trying not to “out” each other… At the meet and greet that Friday evening, I finally just went over, shook her hand and said “Nice to see you again, Ann” like we had met before. But besides that, it took a bit of effort not to name her as Morpheus..
It’s an odd relationship you have with your therapist… more than acquaintances, less than friends. You discuss things with them that you may never have told anyone else. It was all out-of-pocket for me, but worth every dime, I believe. Though there is probably at least one person who disagrees…
Ann works a lot with people in end of life situations and with chronic conditions, so she was really a perfect fit for my situation. The shame of surviving diabetes and the stress of being a care-giver. She walked with me as I worked through all that. Talk therapy is a lot of work on your part, your therapist can’t really do anything except make suggestions. And she made some good ones, though I still haven’t quite forgiven her for saying I was a “people person”…
But anyway, Ann has agreed to do a guest post here sometime in the next few weeks. Though I’m sure you wish it, she’s not going to talk about all my skeletons nor just how wonderful I am… /wink
** Read the follow-up to this from Morpheus herself at Morpheus Speaks
© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com