Making end-of-life decisions for a loved one is a very scary thing.
Yet families are the ones that most often decide.
This is a part of caregiving we didn’t think about–or think all the way through.
No one wants to feel responsible for deciding if another person lives–or doesn’t live.
But you may find yourself in this very situation.
What do you do? How do you make such a monumental decision?
What if you decide wrong?
What if other family members disagree with you?
How will you live with yourself?
These are common questions that can absolutely paralyze you.
How do you decide?
First, if you’re not quite to this point, then do everything you can to get your loved one to sign a living will. Force it (Lovingly coerce) if you have to, if you feel you’re coming to the end of your window of opportunity. You’ll be glad you did. I highly recommend The Five Wishes living will.
If you cannot get them to commit to something on paper, then listen, take notes, and then decide on their behalf. They are essentially asking YOU to decide by them NOT deciding.
Know that you are not killing your loved one!
I cannot stress this enough. One of the greatest gift that working with hospice can give you is to reassure you that allowing someone to die is not the same thing as killing them.
Doctors will in many cases make you feel guilty. Their “oath to save” can get in the way of their humanity. I’m not trying to bash doctors, but it’s as if they don’t use their higher intelligence, intuition, and good horse sense to realize that we all will die–no doctor has ever saved a person from dying.
I know how scared you feel. How angry you are to be put in this situation.
I know what it’s like to feel like you’re carrying a cement block of guilt in your chest wherever you go.
My mother, who had Parkinson’s and Alzheimer’s was coming to the end of her life. She was 91, almost 92 and she had been living with me for the last year and a half of her life (and mine). It was tough.
My mother went from being unbelievably vivacious, cantankerous and demanding to being “lost” in Alzheimer’s, out of control, didn’t know me, and my caregiving had come down to sad to say, I felt as if I were caring for a wild animal at times.
I don’t meant that offensively–please don’t take it that way. I just felt as if I could not reach her. She was not there. I was performing a set of duties or functions, and that the mother I knew laid safely tucked away in my heart and my memories–but she was not this woman in front of me with a void in her eyes and an almost blankness to her soul.
She had signed a living will and had specified that she didn’t want a ventilator, but she did want pain medicine. The problem was, that was about the extent of it. She wasn’t in pain, she didn’t need a ventilator at the time, but the question of a feeding tube wasn’t addressed.
What was I to do?
I was beyond the end of my hope.
I had to decide. I was an only child. I was not about to pull in out of town relatives (none of whom had been involved with her care in the last 18 months) to then put their two cents in.
It was up to me. Hospice helped alleviate some of the guilt. They gave me–and my mother permission to let go.
That’s the day I became a woman. An adult.
Not the day I got married, not the days birthed my children–it was the day I had to decide how much longer my mother would live.
I knew rationally I was not kiling her. Parkinson’s, Alzheimer’s and heart disease had done that. But I knew that I could shorten her time. That was in my control, whether I liked it or not.
I thought long and hard about the feeding tube. What it would mean for her, for me, for my family. I knew the toll my caregiving had already exacted on all of us. But this was not a decision I felt I could necessarily make based on the good of the many…I had to decide about my mother’s life.
Whew. Tough. I did not want this. I did not want this decision. This responsibility. I wanted to run. Literally run, but I couldn’t leave my husband with this–as unfair as it was for me, it was even moreso for him.
It came down to this:
Even with a feeding tube, I couldn’t reverse the effects of these diseases. She would still have Parkinson’s. Still be lost in Alzheimer’s. Still had already had three heart attacks.
It was time.
Did having faith help?
Yes, it did, but I can also say that just about everyone fears and dreads death–we’re meant to love this world, love our bodies, our life and our families. Letting go is hard–no matter what’s to come.
Ironically, deciding wasn’t to be the most difficult part of my journey. It would be living with my decision. Sitting beside her as my choice played out before me.
I stop here not to be coy. Not to play a writer’s trick on you. I stop here and will pick up with this blog tomorrow because I feel like–if you’re here, or you know that you will soon be making these kinds of decisions, that I’ve given you enough to mull over for now.
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
Family Advisor at www.Caring.com
Syndicated Blog at www.OpentoHope.com
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