30 Apr No One Told Me Dying Could Take So Long
An account of caring for a dying loved one and things I wish I would have known
I’m caressing my grandmother’s placid thinly skinned skull in her assisted living apartment. I have agreed to be here for the next 36 hours while my uncle takes a much needed break. My back aches from bending over to her left side, where she’s angled towards me propped up with pillows to reduce bed sores. There is a spilled dark chocolate Ensure stain under the side table; it’s old. Maybe two weeks? I’m sure it is contributing to the dirty diaper, old milk, and death smell. Most of her stuff has been packed up or given away except a few books and wall hangings. What’s left in her closet are shirts because that’s all she wears now. Under sheets and blankets, diapers and socks are all that dress her bottom half.
The room is messy. Clothes strewn about from my uncle who has been here for over a month, living on the couch while my grandmother dies. On the wall is an old greeting card that’s been laminated and unfolded so that the entire Irish blessing in many green colors can be read. I put it there and realize it’s out of place. It was always in her guest bathroom for as long as I can remember. I see her cherished family vase is packed. I wonder who will inherit it. I’m glad that I was able to spend time with her only a few months ago to write down where it came from, and in a note warn, that it cannot actually hold water.
The knick knacks are gone, there are crumbs in the carpet, and not long ago Grams would be disgusted. Cleanliness and orderliness must have been in her top five values. But she doesn’t care now. She is unresponsive. She has been bedridden for over 7 weeks. In the last few days she has stopped opening her eyes.
Four weeks ago she asked me, “Who’s driving?” Where Grandma? “Who’s driving?” I am. “Ok, well I’d better go to the bathroom before we leave.” Grams, you can’t walk on your own. I know it’s hard, but you can go to the bathroom in your Depends. She looked at me and then closed her eyes, leaning her head back down on the pillow. When nurses came to change her, she said, “We’re getting ready to leave.” Then looking at me, “She’s driving.”
Losing her independence was a long slow process. It started when she had knee problems. Eventually we asked her to stop driving, although she never turned in her driver’s license. She loved being independent. It was her independence that brought her out West, away from the well off family in Minneapolis and into the shack of the fish farmer with no income. Being the main provider for her family she pioneered female breadwinning.
For the last decade she told every family member that she was ready to go, to die, that she didn’t know why she was here. I would tell her, “You’re here for me Grams.” She had her books, crosswords, and the regular visits from family members. She also could use the bathroom on her own.
Several years went by before she needed help making meals; her hands were not dexterous enough to open cans or strong enough to reach cupboards. At 96 my uncle found her on the bathroom floor and from then on she couldn’t walk.
About two weeks ago we were doing arm exercises, and with her outstretched mostly bone arm she was able to do three enthusiastic upward movements. She even pumped her toes five times on her bad leg. She was sitting upright; I had opened the blinds so that the sun poured directly onto her skin. She asked me, “Do you think I’ll be able to walk again?” I hated that question. If I had said yes, would she have kept doing the exercises? Would that answer have given her the motivation to get better? To continue living? But I had to be honest with her. The bluntness of the question demanded the truth. “No Grandma, I don’t think so.” Before I left that day, I had the audacity to tell her to keep doing the exercises.
Going to the bathroom in her bed was the last straw. She would close her eyes disassociating from the experience of others wiping her privates. I made sure to watch; as the female caretaker I wanted to make sure she was clean and dry.
She asked the nurses, “How long is this going to take?” And another time, “Is there a magic pill?” The nurse answered, “No, that’s between you and God.” She started to sleep a lot more and sometimes I wondered if she slept because she didn’t have anything left to say.
The chaplain told Mom that sometimes people stay with us because they are waiting for reconciliation. The chaplain had only been at this for two years, but she hadn’t seen someone take so long to die. We got hints at some of Gram’s concerns. Coming out of what was likely a dream, Grams told me that “no one was there.” She told Mom that she was worried. And all the while the hospice nurses were taking her blood pressure, checking her feet, and listening to her heart claiming, “Her body’s doing great.” Her body, that beloved fleshy creature, evolved and adapted for this Earth walk, is strong.
The best way her spirit knew how to end was to stop eating. Mom and my uncle mostly agreed with this course of action but if she asked me for something, I would give it to her. But Mom and my uncle were hesitant. By feeding Grams aren’t we prolonging this?
Imagine: Your mother wants to die. You are responsible for her. You are tired. You have come to her bedside for weeks and weeks. She had bowel movement issues with severe pain the last time she ate. She hasn’t eaten in two days. You don’t want her to suffer anymore. She asks for some food. What do you do?
I didn’t want to pack up her belongings. My uncle asked me to take something every time I left, but I said no. I didn’t want to do the practical actions that would solidify a belief in her demise.
Wanting her to die. Not wanting her to die. Is there a right way to feel?
There are plenty of resources out there to know what to expect when you’re expecting… death, but what no one told me was that it could take so long. Long enough to feel complex emotions, like celebrating for a drop in blood pressure, a sign of the inevitable and welcome end. Long enough to feel like death can be a choice, a struggle between a healthy body and a determined spirit. Long enough to feel grief while the dying are still alive. Long enough to get bored from waiting, bored from doing the same thing over and over. Long enough to wonder what really happens after the last breath.
The process is almost done. We sense it. Touching her body helps. I feel her and somewhere in there, I know she feels me too.
Savoring. Relishing. Cherishing.
I wash her sun-spotted, wrinkled, beige skin. Until now she has always made some indication that she loves the warm washcloth on her face. Is she reminded of warm baths and mineral hot springs she soaked in at Lava Hot Springs? Does she relish the tender caresses and attention to every curve of her face from her beloved granddaughter? I kept telling Grams that she looked younger and younger every time I saw her. That much attention to her skin made it glowing. I got at least one chuckle out of that.
As much as it is terrible to not have independence, having your son live with you, your daughter come and spend time with you every day, and your granddaughter take tender care of you can’t be all bad. There are some beautiful things going on.
And isn’t this a holy time? Unlike playing cards, or making dinner, this is a once in lifetime occurrence. My grandmother lived 97 years and counting. These precious last moments will not be duplicated.
When I’m crying and holding her hand, it comes to me to pray. And considering I don’t know what she needs, I pray for me – out loud. Because that’s what I do know. What I need. I pray that every cell within my body knows how much I am loved. I pray that with ease, comfort, and compassion, I will relax into what is. I pray that our ancestors and God(dess) wrap their arms/wings of unconditional love around us so that we may feel their presence. I visualize Grams, her children, and me whole, connected, and at peace.
I sing to Grams, and it’s a sad tune. I hold her hand and hang my head between my knees. I’m going to miss you Grams. From my heart I say, there is no other place I’d rather be. When I come up to clean out some gunk on her tongue, I see she has small tears in both eyes.
I am sad and present. I am wholly devoted to every sense occuring. I take her soft hands and arthritis jointed fingers into my own and place my plump lips against her fragile, white and purple skin. I sense the electrical connection – my pulse off beat to hers.
Is this heaven I wonder? Is this the moment I have always been waiting for? Here I am in the most intimate of moments with the elder who contained my pre-egg material in my fetus mother – all the potentials of who would be her grandchildren.
What is better than this?
Perhaps the delightful moment when she saw how many people came to her 95th birthday after she’d told us “No one will come. They are waiting for my funeral.”? Or perhaps when I cut her toe nails, long, curved in and discolored from years of hiding behind socks? Or when I cooked her a baked potato, her favorite, in her trusted summer arts and craft fair fabric pocket that boasted a 4 minute microwave cook time?
Now I see these moments for what they are. And this one too. This is it. This is what I came to Earth for. This moment. Not to be happy, or to be successful. But to be present. To be with Grams. To be with me. To be with all of these emotions that cannot be summed up in an essay. This. Now.
I wonder if birth filled with the adrenaline rushes of a new soul, so many healthcare workers around, the stimulus of the machines, and the expectations of a new life would be as serene, spacious, delightfully attentive as this. I have not been present for a birth. But I can say that the sacredness of death and the honor of being present to its arrival is a privilege.
The staff come in and change her every few hours and they bring me snacks. When I’m napping on the couch, they quietly ask if I need anything. After they leave, I take a moment to feel loved. Because that is what caring for another person is – loving them.
I can smell a bit of her on my hand. I inhale deeply. I don’t know how much longer I’ll be able to smell her. A hint of carrot, vanilla, and warm milk.
My mom is coming soon to take the next shift. A part of me wants to stay, because I know the end is near and I know this time is precious. Another part of me knows I need to stretch, take a hot shower, and sleep in my own bed.
I’m looking out the window of my grandmother’s smelly room. I see hundreds of small neon orange flags flapping Southeast in the grass. They weren’t there a few days ago. It looks like gophers are staking claim of the field, all for the same country.
I smile. The wind has shifted to the North.
*
Grams took her last breath 15 hours after writing this, each hand held by two of her children’s and me holding her feet.
Tips for being with your dying loved one (DLO)
- Take care of yourself. Ask yourself, what does my body, mind, and soul need?
- Eat well, sleep lots, stretch, move. Even though you do not know how long this will take, you still need to take care of yourself.
- It may look like you’re sacrificing your health for your dying loved one (DLO), but in the long run it’s not helping anyone. You being healthy is a gift to you and everyone around you, including your DLO.
- Express your feelings. Even the weird ones that sound awful. Behind all of them are good intentions and the earlier you are able to express those, the sooner you can get to the root of them.
- Buy a journal, talk to the chaplain, talk to others who have gone through a similar experience, a grief group, a therapist. Do it on a regular basis. Find a safe and trustworthy place to express regularly.
- Oftentimes what you need is a physical way to honor your loved one. Write their obituary or write them a letter of gratitude. Draw a picture of them or create a poem.
- Express how you feel about death and the process of dying. Remember your feelings are not the same as the ones of your DLO. Just because you aren’t settled or ok with the process, just because you are suffering with anxiety and doubt, doesn’t mean your DLO is.
- If your DLO is ok with touch, touch them as you would an infant. With tenderness and love and often. Touch is a physical way to connect and communicate your love.
- Lean on your support team. They are there to help and are eager to meet your needs. This includes nurses, family members, therapists, hospice care, Chaplains, Pastors. If you can’t identify your support team, reach out to get one.
- Your loved one is the boss. Get good at asking questions. Their desires are hopefully laid out in a living will. Follow their lead. It can be normal for you to want your DLO to follow a specific course of action. But when that doesn’t happen (because they are not you), go with the flow and allow it. They’re the boss.
- Get good at listening. The slightest head movement can be a yes or no when they become less conscious. Remember this is a holy time, their death is as sacred as their birth. Honor them in their decisions.
- Be patient. They will go when they go. Using force isn’t how nature does things. Imagine that you are taking care of an infant, swaddling them into the next world from where they came. Take as much tender care and loving and enjoying from this time as you can.
- It’s ok to cry in front of your loved one, to feel the authentic you is a gift to them.
- Ask the question, how can I make this enjoyable for me? Singing? Reading poetry? Dancing? Watching an online comedy show? Watching sad movies? Verify that it’s ok with your loved one and then go nuts!
- There’s no rush in the inner process of grief but don’t stop. Be as compassionate to yourself as you are to anyone else.
- Suffering is an option. Pain and dying aren’t. How do you feel about these? Understanding these in yourself will help you be with the process.
- We project our insecurities, our sufferings onto others. If we are struggling with boredom, if we are uncomfortable with the nothing-ness, we may assume others are that way too.
- If you can’t handle pain, then you aren’t going to be a great helper to your DLO.
- If you can’t handle dying, then you aren’t going to be a great helper to your DLO.
- It’s ok to not be a great helper. Remember the first point. Take care of yourself.
- Remember we are all evolving.
- Wherever you are at is ok. There is no destination. Because getting around that bend just reveals another bend.
You are a gift. Thank you for loving yourself and another.