I do not want to be kept alive or kept on mechanical support if I have a permanent and severe condition where I am not able to take care of myself, and I am not expected to recover.
Whoa. This is ME I’m talking about. Not my elderly friend, not my mother, not my daughter who died. It’s also about some of you who have no devoted partner or family member who you feel absolutely certain will step in and make all the exact right choices if you lose your ability to make your own health care decisions. Who will take care of us, and how?
I’m watching a lone duck swimming in my pond where the ice is closing in on her, and imagining that one day I, myself, may be cornered into an ever-shrinking world with limited options. A world where I am no longer in control. Facing pain. Dementia. Death. My gut suddenly feels like I’ve swallowed an iceberg.
Years ago my daughter, in the throes of cancer, appointed me to be her health care proxy. Not understanding what that meant, I was thrilled to be chosen over other family members, and I carried that document with me like it was a certificate of merit. But I was clueless. We never talked about quality of life, pain, comfort, dying. What she might want or not want. I flubbed the job. When her health eventually crashed, and the doctors wanted to shove scaffolding through her ribs to bolster her collapsing lungs and—well, who could have predicted the myriad of sudden frantic decisions and all the things that could go wrong in a short time? I’m screwed if there’s such a thing as bad proxy karma that catches up with you when your own turn comes.
Having witnessed enough human deaths, and played god for too many pets’ endings, I do not take this health care proxy thing lightly. As the New Year tumbled in, I lost sleep worrying about how another person could possibly make life-or-death decisions for me, ever. When a friend finally looked me straight in the face and said, “That’s going to require a very long conversation,” I practically wept with relief.
If you were close to death with no hope of recovering, and you could not make decisions or communicate your wishes, what would you hope for from those who are caring for you?
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Thanks for sharing this and the need to act. Yes, a long conversation. Even though I knew what Vic and Virginia wanted, I had no idea of the responsibility–especially with Virginia who went on and on and needed more and more care and decision making to stay with her desire. She was clear from start to finish, so that made it easier. I was constantly trying to keep her out of the ER when she was in her own apartment and a nursing home.
We all need someone to trust that they will follow through. I got lots of help from Hospicare and from my family doctor in making these decisions and getting them in writing. Good luck! It’s important.
Oh, Elaine. That whole thing with the ER, coming and going and going again every other day, mostly in the middle of the night. It was a nightmare. My mom didn’t want Hospice, refused it when they offered their services to her. Then, luckily, something made her change her mind. Maybe it was the scariness of not being able to breathe. Maybe it became apparent to her that they were not going to be able to fix her. I don’t know, she wouldn’t talk to me on the phone or answer my emails. The only communication I got from her was here on my blog. One week she wrote I shouldn’t give up on her, that she wasn’t ready to go. Then the next week she wrote she’d be happy to go. And she wanted Hospice’s help. Hospice in Pompano Beach was different from our Hospicare but it was still wonderful. They treated her like a queen and made her so comfortable. She suddenly had a new mission – to die quickly and peacefully. She got her wish. Mom waited long enough to see all her children, then asked to be helped into the sofa she had stopped using because she could never get up out of it herself, and simply went to sleep, and died. Sigh.
I want hospiICE—-HOW DO i GET I
I’m ready to transfer all my financial responsibilities to my children and to go quietly into the next world. There is nothing more for me in this world . I have lived a good life,, more or less.and am ready to go quietly into the next, All that is left is being short of breath at every attemp[ to breathe. — so this is painful for me and I could be happy to go quickly and quietly to be at peace. That’s the best you could do for me at this point.Don’t struggle to keep me alive — I am happy to go. I love you all.
Hi Mom. So my website seems to be the only place where we can hear each other these days. I love that you are keeping up with my posts and responding. I wrote my next post for you, publishing on Monday. I know that you are Ready. I am on the way. I will see you tomorrow, Thursday. I’m sorry it is getting so painful for you to even breathe. Please, let’s reconsider calling Hospice to help. It doesn’t have to be this painful. I want to help you get through this and make it as beautiful for you as I can. Quietly, peacefully – okay. but I hear that you can still party a bit and are still excited about going out to a nice restaurant. So, if that’s the case, let’s live it up a little. Let’s make your last times magnificent. Lots of love.
Like you, Robin, I do not wish to be kept alive through medical means if there is no chance of recovery and I’m in pain, etc. My living will makes this clear, which will help my health-care proxy (my daughter) when the time comes. I’m thankful I was able to help my husband at his end of life by calling in Hospicare.
Yes, that Hospicare is so amazing, Lynne. I don’t understand why people are afraid to make use of the wonderful, helpful, warm folks there. People wait until the very end to use their services when they really should take advantage of all the ways they help families live better before dying better.
Bravo, Robin! Facing difficult life decisions with bravery and realism. And educating all the rest of us in the process!
Oh, you are very generous, Suzanne. But I’ll take all the compliments I can get right now. Something tells me I’m going to need every bit of support I can get in the next few weeks. Thank you!