10 Things I Learned From Caring For My Dying Mother

HandHandThe morning never seemed so quiet at my parent’s house. I strained to hear the compressor pumping air into the mattress on my mom’s hospital bed in the living room. “Ker Phhhhhhhhh, Ker Phhhhhhh,” as it drew air in and out of the mattress, keeping my mom’s blood circulating evenly through her body. My mom had a rough night the evening before, waking up at 2 a.m. after soiling herself in her sleep. Not able to move from her bed, she was forced to defecate where she lay. And not wanting to wake anyone, she remained in that position until she finally couldn’t take it any longer. She woke my dad who was sleeping on the couch next to her. My dad started the clean-up process, but overwhelmed, woke up my sister and me to help him clean my mom, remove her nightgown and change and wash her bedding. She was embarrassed and frustrated.

“I just want to die already! I can’t live like this any longer!”

“Mother, we’re here for you,” I assured her. “Don’t be embarrassed and don’t beat yourself up. This is why we’re here. We love you and we aren’t ready for you to die.”

As my mom lie naked from the waist down, I lifted up her legs like a toddler, while my sister slid a pad under her hips. I got a diaper out of the package left by the hospice nurse, and placed it on my mom. Never having children, this was foreign to me. But I had diapered plenty of baby dolls to know the general vicinity of where and how this thing should go on. This would be the way my mom would relieve herself from now until the end. No more portable potty. No more humiliation having to crap into bucket in the middle of her own living room. No more night time accidents. Self-contained bowel movements were much easier to deal with than unexpected explosions. I pulled her nightgown down over her hips and ran a baby wipe over her legs for a final cleanse.

“Just let me go to bed. Okay? Just let me go to bed.” She turned her head away from us and I could see tears rolling down her cheek.

I pulled the covers over her, kissed her goodnight, and my sister took the soiled linens down into the basement to wash. Peeling off my rubber gloves, I discarded them in a plastic bag that I tied up and threw into a garbage bin in the garage. I washed my hands, then coated them with hand sanitizer, something I had been doing at least 15 times a day since adopting the job of caretaker. We all went back to our rooms, my dad retiring back to the couch.

As I walked away, I could hear my mom weeping.

(A excerpt from “14 Days — A Memoir”)

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Parent/Child care giving begins in the womb. A mother gently strokes her own belly to soothe her baby’s restlessness, watching what she eats and staying away from anything that might harm her child. When the baby is born, it’s a 24/7 vigil of care — swaddling, diapering, anticipating cries and deciphering what they mean, feeding, cleaning, keeping their child comfortable, happy and healthy.

Parenting doesn’t stop when the child is able to care for themselves. As my mom once told me, “I’m going to worry about you and take care of you until the day I die, so get used to it!” And she did. Until she couldn’t care for me any longer and the tables came to an abrupt turn.

The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you — not to mention literally gave you life — and taking their fragile body in your hands like a newborn, tending to their every need.

I learned a lot while going through this process, including a lot about myself. Perhaps some of what I learned can help you through your personal journey:

1. When the going gets tough, you will get going — No job is too dirty, personal or embarrassing. A part of you steps in that you never knew existed. You never think twice about the tasks at hand and lovingly carry them out, no questions asked. Don’t be afraid. When you love someone, caregiving comes naturally.

2. No one wants to be a burden — Especially our parents. So keep this in mind through your journey. When you feel frustrated, walk away. Go outside and take a walk — breathe in some fresh air. Don’t let your loved one feel your frustration because, through this entire process, they’re burdened with enough frustration of their own.

3. People are good — So many friends and relatives stepped up to help during this time. Some bringing food, others cleaning my parent’s house, many sending words of support, several gathering around my mom’s bed to send her off with words of love. Don’t be afraid to ask for help. And keep a strong circle of love around you. It’s what keeps you going.

4. Hold on to memories — A nurse told us about a patient of hers who recorded messages for her loved ones before she died. My mom loved this idea and asked me to videotape messages for her friends and relatives. Some were recorded with my mom lying alone in her bed, others were recorded with the person at her bedside. After my mom’s funeral, I edited the videos, uploaded them to YouTube and sent individual, private links to everyone she sent messages to. It’s a gift so precious that you’ll cherish forever.

5. Ask questions while you can — At some point during the last 14 days I had with my mother I realized that, when she left, she would be taking a wealth of knowledge with her. Who do you call when you have questions about family, recipes, history, life? You call your mom. Losing this link is losing a link to your past. Make a list of questions, write down the answers. This is your family history. Chronicle it while you can.

6. Laugh…a lot — In light of the inevitable, a lot of laughs were shared during my mom’s last days. We told stories, jogged memories, brought out old photos and laughed until we cried then laughed some more. Not only did it help my mom forget her circumstances for awhile, it helped us get over those moments of stress we were all feeling. Just remember that to laugh isn’t to disrespect the situation. Even at the funeral, laughter helped us all get through. My mom would have wanted that and she’d want that for you, too.

7. Share — Share feelings, share stories, share recipes, share responsibilities, share tasks, share hugs. Whatever love can be exchanged, exchange it. You’ll all feed off of each other and sharing is a way to keep the energy flowing.

8. Be kind — Be kind to yourself, the patient, your loved ones, and those around you. Tensions can run high at this time. Old wounds can open. Siblings can — and will — rival. Remember that you’re all in this together and everyone processes fear, sadness and grief differently. What may be right for you, might not be right for others around you. Don’t lose sight of goodness. Remember to hug.

9. Keep an open line of communication with nurses and doctors — If your loved one is receiving hospice care, and is not in a hospital, be sure to have a list of names and numbers to call should you need them. Coordinate care with nurses, keep doctors in the loop with all communications and don’t be afraid to ask questions. Our hospice nurses laid the dying process out for us so nothing was a surprise. We were prepared for every milestone. We knew, ahead of time, what to expect and what to do to deal with each circumstance.

10. Love — Above all, keep love in your heart throughout the process. Love is contagious and is its own antidote.

Lisa Goich-Andreadis is the author of “14 Days – A Memoir,” a chronicle of her mother’s final journey. To read more about the memoir, and receive information about the book’s publication, visit: www.14daysamemoir.com.

This story also featured on the Huffington Post

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