After all the caregiving, all the hospital stays, doctor visits, baths, pills, and exhaustion, you have one more hurdle–the dying process itself. One of the toughest decisions you’ll have to make is whether or not to insert a feeding tube.

This occurs when you’re at your lowest. Beyond exhausted. Numb.

You call hospice and more decisions need to be made.

Do you have or need to make a Do Not Resuscitate order?

Do you keep your loved one at home? Do you place them in hospice “hospital”?

Do you choose to put in a feeding tube if they can no longer eat/swallow…or do you not?

I chose not to.

My mother had Alzheimer’s. She had lapsed into a coma. A coma isn’t exactly what most people think it is. It’s not that I couldn’t rouse her for a few moments with a lot of effort, but then, for what? For her to be aware of her surroundings? Aware of me?

I began to say my good-byes. I didn’t need her “awake” or alert for this. I could trust our spirits to do the job. I whispered my prayers, my good-byes. Forgiveness was no longer an issue. I felt at peace–with our lives, our journeys, our mistakes. I read her a Psalm, and kissed her forehead. I urged my family to say their good-byes.

Hospice came to our home and did their assessment. I chose not to do a feeding tube.

Why? She was 92 years old, and had had Parkinson’s for close to 15 years, and active Alzheimer’s for the last three, if not longer. I couldn’t see sustaining this life when she could no longer remember to eat, to swallow, to know anything or anyone.

Still, wasn’t it wrong not to feed someone?

Two books that helped me were How We Die by Dr. Sherwin Nuland–this book was my Bible, and A Handbook for Mortals by Drs. Joanne Lynn and Joan Harrold.

Hospice assured me this was natural. The body would shut down itself systematically. It would finish up, just as if it were the last day at work, and it would close shop. They assured me that “starvation” is different. We were not keeping food from her that she wanted or needed. She was not hungry or hurting.

I needed their reassurance. I wanted to bolt. To call 911, to have them bring in paddles and electrical equipment and scream, “STAT.” I needed them to jolt her back to life.

Could they? Had I been watching too many ER re-runs? Life ends. It does. At some point, it ends.

Hospice had set up a bather, but after a couple of sessions, I told them to stop. It was too invasive. I did a little warm sponge bathing as I changed her diaper, but I chose to keep things quiet, in the flow, and peaceful. The weeks waned on.

As much as I grappled with this decision, I couldn’t bring myself to change my mind–and I was the one sitting by her bed 24/7. I watched for signs of pain or discomfort, for her to rouse, to ask for something, even with her eyes. We remained steadfast, me in my vigil, her in her dying. ING. The act of doing something. Present tense. She was dying, not dead.

It took three weeks. I swabbed her mouth with Vaseline, I moistened a cloth and drizzled water into her throat. She’d gag. I stopped. Still, I feared that someone would find out about the horrible thing I’d done. How could I not feed my mother? I wanted to go confess. For someone to tell me I was bad and then to rectify this horrid situation.

The hospice chaplain came. More reassurance I was doing the right thing. I needed it.

She prayed, told mother it was okay to let go now, that I’d be fine. She’d be fine. Go on to heaven, go to your beloved Willie (my dad). That seemed to help us both. Funny, how we have to ask and receive permission to do anything in this world, especially die.

I sat. I prayed. A little. You think you’ll be super spiritual. Quote scriptures. All I could do was just survive. My prayers were not words. Maybe they were there in my molecules, but I couldn’t even form thoughts.

I thought about that tube. What it might be like if she lived a year or two like this, with a tube in her stomach, with me dumping liquid sustenance in three times a day. Even in my thoughts it seemed futile. More futile than sitting still and witnessing death. I had to allow this to happen. Allow my mother’s passing. Allow.

I wrote my way through it. My pen and journal had been my guide and I needed it more than ever. No one could tell me what it was like to sit beside someone dying. I couldn’t find it. I had scoured literature, medical books, self-help, and they all seemed to skirt around it. I needed a step one, step two. I needed insight, foresight, hindsight.

HOW DO I DO THIS? I asked God, myself and the page.

My mother passed away quietly. A few gulps. Three very long weeks. It took all my resolve. It took fighting guilt, regret, fear, sorrow. It took all I had.

In the end, it was just my mother and me on a warm June day. I held her hand. Kissed her.

Allowed her to die.

***

The first year was hard at times. The questions. Did I do the right thing? I did. I know I did. Still, I felt like the police might break down my door in the middle of the night and haul me away. I had let my mother die. This may be a natural part of grieving, to question yourself, to mull over guilt, but you have to move past it eventually. I had to trust and believe that I was not in charge of my mother’s fate.

How arrogant we are to think we have that much power.

Slowly, I began to be okay–with us, with our time together, with allowing, with not inserting a feeding tube. Slowly, I came to a deeper place of peace, acceptance, and resolve.

***

Each family is different. Each situation unique. If it had been my husband, if my mother wasn’t 92 and at the end of Alzheimer’s, if it had been my child, I might (pretty sure I would) have made a different choice.

It came down to this:

I chose against a feeding tube because I couldn’t justify what I would be bringing my mother back to–I couldn’t change the facts–she had end-stage Alzheimer’s and Parkinson’s. I couldn’t make that go away, and prolonging it seemed even more cruel than the decision of not putting in a feeding tube.

Dying is part of living. We just don’t have much experience at it.

Once you have grappled with your choice and know that it’s the right choice, just a hard one–then trust.

Trust your gut. Trust your good heart. Realize that your peace about this will come and go, and eventually, it will stay.

~Carol D. O’Dell

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

http://www.amazon.com/motheirngmother

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