When someone is sick in our society, we do everything in our power to make it better. Our survival instinct is very strong and our whole health care system is set up to “cure” the sick. I hurt my back a couple of days ago. All I wanted to do was to make the pain go away, to be back to full mobility again, to do everything I could including icing, heat, exercises, rest, visiting the Emergency department, medication anything, ANYTHING…. to make it go away.
Looking after someone who is in palliative care is like doing a total 360 degree turn in thinking. You literally have to rethink everything you believed about health and getting well. Instead of fighting tooth and nail and forging ahead like a bull with it’s horns ready to fight, fight, fight…. palliative care requires us to step back. To take off the boxing gloves and don gloves of the softest cashmere to caress and comfort instead of fight.
To my autistic brain this doesn’t make sense. It’s not logical. When you love someone you must do everything in your power to keep them, to preserve them. To me it seems like giving up. I’ve spent my whole life having to fight to keep going, to survive that to suddenly step back and just let nature take it’s course is as foreign as being on the planet Mars.
I have to admit I am having a real hard time with this. I have had several conversations with the palliative care nurse about her blood sugars or her not exercising or not drinking enough water. She has to each time gently remind me that this is not about these things any more. This is about keeping her comfortable, and letting her make her own choices about how she wants things to go. I listen but in my head I cry out NO, she has to do these things. I can control what she eats, I can control whether she does her exercises. You are telling an autistic she has to let go of all control. Stepping back is a huge NO NO. An impossibility. Not logical.
How do you let go of someone you LOVE? I know, I know, I have heard the saying about if you love something you let it go and something about it will come back to you BUT… Mom is not going to come back. She will be GONE. I want to cling to her, hold her so tight and NEVER let go.
Stepping back is like turning your back on all that you care about. I feel like I am standing high in the air on the very edge of a diving board. I step back and I spiral down and crash into the water sinking deeper and deeper. I can’t breathe and I struggle to find my way in a strange watery world to a world that makes sense to me and I can breathe. But I can’t make it to the surface. I’m drowning, drowning in sorrow and loss.
Stepping back is the new reality for me now. I have no choice. The only choice there is, is to keep Mom comfortable and happy. So can I somehow, turn my fight into fighting to do this in the very best way possible for her. I think that will be my new goal. That is the only way I can see to go through this and not drown in the process. My mantra will be “comfortable and happy”. I have to let go of the old way of fighting and embrace this new way of fighting for my Mom. The only thing that’s different is that there is no winner. And the grief goes on……