Let’s get deep tonight. Long and Rambling Post Ahead.
First, something is wrong with me. I don’t know what it is. Last week during clinic I started getting REALLY sore on Thursday. Friday I was physically hurting, couldn’t grip my hands because they were so stiff, couldn’t sleep or get rest. And now it’s become all that plus this OVERWHELMING lethargy. I can’t make fists because my fingers won’t bend that much. Like, it hurts to MOVE. I spent most of the day in the air conditioned bedroom writing some stuff for work and watching Netflix. Tonight, I’m waking up. Looks like another weird sleep pattern is beginning.
My house in MN is empty and spotless. A friend of mine and Michael’s cleaned the house and did a beautiful job (thank you Molly) and a couple of other friends helped scramble to get things out and into my storage unit (thank you Pat and Jen) and other friends have been holding down the rescue (thank you Jeni and alllllll foster families ❤ ).
Anyway, last night I was talking with my friend Pat, and she is currently helping with hospice homecare for a friend of hers. She is going through it firsthand and experiencing it. And as we talked, sadly I was the expert. I could gauge exactly where he was in his process, and where his wife was. I was able to give sound advice and a sympathetic heart.
Talking it through with Pat really brought me back to that time. My PTSD kicked into gear big time and I was just reliving so much today. I think back to the period of time when I was hospicing Michael. I had JUST brushed the dust off my shoulders from hospicing my dad, and I was thrown right back into full-time hospice caregiver mode.
Turns out I was pretty good at it. I learned a lot working with my dad (I was in CA hands-on full-time round-the-clock home caregiving for almost 3 weeks in Jan/Feb 2018). I was incredibly into every aspect of care that I could possibly provide. I was reading all the pamphlets and the hospice workbooks and learning all about what he was doing and why he was doing it. I mastered drug protocols, mastered changing sheets while the patient is still in the bed. I know how to lift a 250-pound man off the floor by myself. Then, not to be outdone, Michael came around the corner and taught me how to tube feed, change IV’s, put in catheters, and monitor oxygen intake. He taught me about popsicle worthiness and the powers of a Wonder Woman blanket. That, I think, was the only thing that kept me sane. When it came to medical stuff I just flipped a switch and it was all about data and just gathering information and results and facts and options. All while trying to figure out if this was really happening, advocating for his care, fighting with his insurance company, fighting for a different doctor, fighting fighting fighting, wondering what the fuck I was going to do, and if this was all a mistake, and looking at the house and thinking omg I have to pack all this up ALONE, and feeling guilty if I left his side because we had such LIMITED time left, and grieving him and my life and our home and everything I thought was real. I was wanting to call my dad, oh wait he just died, I was wanting to talk to Michael (duh), and I was completely lost. I couldn’t share any of these fears with him of course, so it was a LOT to deal with.
It was my own dark side of the moon. It was the most horrifying, terrifying, sad, helpless, hopeless, cruel, ugly, soul-crushing time of my life. Those weeks after we knew, but we didn’t know when. They are torture. They are cruel, and painful, and long yet also fleeting. It was a time of having absolutely ZERO control over the rest of my life or his. A time when we were just waiting for the universe to steal what we worked so hard for. To take away what we deserved for reasons we don’t understand. A completely irrational, foggy, disorienting, painful, surreal time. A time when you really wondered what was the point of waking up.
In the course of 7 weeks, we said our “final” goodbyes THREE times. It was a constant fight for his life. And it was TORTURE.
Anyway, the photo above about The Remembers inspired this whole blog post. We always need to remember for every death there is a survivor. The people who have to wake up that first morning after their soulmate has left this life and face the shit that is only just beginning. The people who are in such a fog, most likely Xanax or Prozac induced, and still must talk to hospice and mortuaries and vital records and insurance companies and employers and neighbors and family members. Those people. In the beginning they are mere survivors, but over time they will become REMEMBERERS. We MUST take care of them. Because for ANY of you to think that Michael dying was the worst thing ever, you are wrong. The worst thing ever isn’t him DYING. It’s LIVING without him.
Here I am tonight over a year later, immersed in it again. Not constantly, this was a triggered thing. Remembering every detail of the “during”. I think often about the before. I think QUITE often about the after. But I haven’t processed the DURING part yet. But now I remember. Every conversation. Every exchange. Every look, every nap, every fight, every scare. I had a full blown panic attack today. PTSD is the reason. We can’t make a direct connection from this to that, but I never had panic attacks in my life before he died. And I can definitely connect them to days when the PTSD is bad.
Being with someone who is dying, changes you. It affects each person differently I am sure. My experience is that it’s a very sacred time and a deep honor to be with someone in their last moments. It’s a peaceful and beautiful process and to think, this person CHOSE me to be the last person he sees. How amazing is that? Yes it’s sad and it’s heart breaking of course. A piece of you dies with them and then you lose another BONUS piece because it was so painful to see. But I still feel honored to have been with several people and many more animals as they said goodbye. I think that’s an important role to fill and I truly do feel that it’s a gift to have that time with them.
I’m going to get through this episode. This isn’t a sad or depressed post. This isn’t a feel sorry for me post. It’s just my reality. Some days are better than others, both with the chronic pain AND the grief. When they come together, it takes me down sometimes. I’m actually in a positive and hopeful state of mind, and I’m feeling REALLY content and at peace. I know that sounds weird with all the crap I just described. But in spite of these speed bumps, at my core behind all of that – that’s where I feel at peace. Speed bumps don’t matter. They just make the ride a little bumpy if I don’t slow down.
In happy news, the MN house is going on the market this Friday!! Let’s ALL put our hearts together and send vibes for multiple offers/ bidding wars/ under contract WELL OVER asking by Monday! LOL is that so much to ask?
I’m going to expand on this topic of being a Rememberer in future posts. I think it’s interesting and a completely different take on grief.
“Yes, we are the rememberers…and we will always be.”