Dear Family Advisor

My sister wants to pull the plug on Mom.

Last updated: Aug 03, 2010

Our mother, who has end-stage Alzheimer's, has been on a feeding tube in a nursing home for six months. Although it's very sad to see my mother this way, I just can't reconcile myself to what my sister wants to do: "Pull the plug."

Removing my mother's feeding tube means she'll basically starve to death. I just can't see doing that to her -- it feels so wrong! My sister says that keeping her alive this way when she's close to being a vegetable (her words, not mine) is even more cruel.

It's tearing the two of us apart, and I don't know if I'll ever get over this. Is there any way I can stop her? She has power of attorney and is the oldest.

You've hit one of the toughest times in caregiving: having to make end-of-life decisions. I'm assuming your mom doesn't have a living will, because if she did, you'd know what she would have wanted and could honor that. Please remember that even though you and your sister are in conflict about the feeding tube issue, both of you love your mother and want to do what's best for her. In that respect, you're on the same side.

Ultimately, since your mother is unable to make this decision for herself, and your sister has power of attorney, she's the one to decide what happens. But this is your mom, too, and I respect your feelings. I strongly encourage you both to reach out to hospice for guidance. Hospice workers specialize in offering the support and expert counsel you need right now -- and will continue to be there for you after your mother passes.

I was in a similar place with my mom. At 92, she had Parkinson's and Alzheimer's and was even forgetting how to swallow. In the end, I chose not to insert a feeding tube. Her living will stated that she wanted pain medication if it appeared that she was in pain, but that she didn't want a ventilator. Even though she didn't state anything specific about a feeding tube, I felt that I knew her well enough to know that it was time to let go.

It was the hardest decision I've ever had to make.

I didn't choose this because I was cold or heartless. I, too, grappled long and hard with the thought that I would be starving my mother, and it felt like a boulder in my heart. Thank goodness I had requested hospice by the time we got to this point. I began to read information they provided and Sherwin Nuland's wonderful book, How We Die. I realized that although modern medicine has the ability to keep someone alive longer than ever before, it's not always wise to do so, for the patient or for family and friends.

I came to the revelation that aging and disease had taken my mother's life, not me.

I also gained insight into how our bodies handle the end of life. With a disease such as Alzheimer's, in which we stop eating, the body naturally starts to shut down, organ by organ. It isn't painful, but it can take weeks. In fact, it's actually more painful to introduce food or liquids back into the body once it's begun this process. Even if I could feed my mother with a tube or jolt her back alive with CPR, I couldn't stop what Alzheimer's and Parkinson's had already done to her mind and her body. My mother had a good long life. She lived well. She loved well. And now it was time to die well.

I put the rest of my life on hold so I could be there during her last weeks on Earth. I did everything I could to bring her comfort and peace, and to say goodbye. It was sweet and quiet, but it was by no means easy. Still, it was one of the most profound times in my life, and I'm grateful that I somehow had the courage and guidance to witness this sacred event and to truly be present -- for my mom and for me.

I share all this with you not to sway you one way or the other; this decision is very personal and very difficult, and every family situation is different. I don't feel in your case that one sister is wrong and one is right.

About a month before our daughter got married, I sat my family down and said, "This is going to be a wonderful and stressful time -- and we won't do everything right. Feelings are inevitably going to get hurt. So I suggest that we chalk up anything that happens in the next month to stress and immediately forgive one another. Let's come out of this loving one another more than we do today." It helped (a little) -- we're an opinionated bunch! Maybe something like that would help you and your sister.

Try to "put down your guns," sit together, and really express your heart and your fears. Say everything you need to say. Listen and try not to get defensive. You so need each other, and you'll need each other even more after your mom is gone. Vow to work through your concerns and come out closer than ever. After all, isn't this what your mom would want?