In much the same way that some families self-isolate after the birth of a child, our family is encompassing Jeannie with a cloak of compassion and love – the very definition of palliative care. So we don’t have much to share this week.
But we can tell you that several months ago – and regularly since – Jeannie and Annie and I have read this poem. We have it taped up beside a window in the kitchen, another copy in the lovely room we have set up as a hospice. Jeannie continues to say that it accurately represents her reality. Though composed to explain the experience of a person with Alzheimer’s disease, it perfectly fits Jeannie’s loss of cognitive function as she moves into a more mystical reality.
“Tell me again about the Gold Gate,” she said this morning.
Cultural anthropologist Angeles Arrien wrote about the common passages people experience around the globe. Of the eight gates of wisdom, embracing death is the final gate.
Non-attachment, accepting the death of my human body, and turning to the numinous light are the Gold Gate.
We had been reading the Arrien book before the events of Thursday showed that Jeannie is nearing the end. After the initial confusion, Jeannie started tutoring us in her care as she passes through the Gold Gate.
Non-attachment is difficult of course, but she trusts Annie and me and a palliative team to care for her needs. Her new vocabulary includes a “medical drink” of ice cream and root beer. Or rum and ice. She says “surprise” every time she sees her freshly squeezed morning orange juice. And when she says “overtop” she wants her sheets or blanket or comforter neatly arranged over her.
She talks about the death of her physical body and accepts it. Her decreasing capacities, inability to walk more than a few steps at a time, more confusion, loss of strength. She sighs and cries, sometime laughs about the losses too. And hugs us often.
The “numinous” light thrills her. She knows she is moving into the mystery and awe of a mysterious spiritual light, even saying she could feel it on the couch with the sun shining on her. Through tears she asked me if I am a “stay with me” or a person who will be with her to the end. Yes, I am her companion to the end. As is Annie.
It’s all anyone wants. To be touched and loved and have a “stay with me” to the end. The Gold Gate.
“Tell all those people,” she said this morning from the hospital bed in the music room in our home, “that we had a chair set out for them for a visit. But that’s all not going to happen now.”
Jeannie’s condition changed on Thursday the 25th of June. Quiet in the morning, she’d asked for extra sedative to help her rest. After her nap she got quite dizzy in the bathtub. Garbled speech. Confusion. She did not recognize any of us.
Last night after I helped her eat her favourite dessert – root beer and ice cream float – she looked at me and said, “You are flirty, flirty, flirty!” Though she did not know who I was she pursed her lips and demanded a kiss.
This morning she knew our names. What a relief. But the confusion continues. She’s most lucid just after a sleep, but talks almost non-stop. Our confusion seems silly to her at times.
This morning she told me to write this blog, today. To tell you not to worry.
“I don’t think it matters that they will get information that’s grief laden,” she said, then breaking into a smile she continued, “it’s okay…. They will be stepping away,” from the grief, she said through broken thoughts.
You will have each other. Grief will diminish.
But for now, just hold onto the idea that there is a chair or two – three if someone wants to sit on the commode – in Jeannie’s hospice space here in our home. Visits are over, of course, but she wants you to know she is thinking of you. Loving each and every one of you. In her way.
Listen to the song Love by Joni Mitchell if you want to know what she listens to three times in a row as she falls off into a nap or evening sleep.
Two years ago I signed a Personal Directive, just before my brain surgery. It gave responsibility to David, when making personal decisions on my behalf at the end of my life, to use his best judgement as to what he believes may result in the best quality of life for me.
We are at that stage now.
These days, I’m saying goodbye at another layer down. And it’s hard.
For my whole life I have closely guarded my power and control, my safety and security and my need for affection and esteem. Here are some thoughts as I contemplate stepping away from these areas we all consider essential to life.
Stepping back from power and control releases me from worry. The hand-off may seem awkward and things may fall through the cracks but they are no longer mine. As a veteran home-body and nest-builder, the hardest piece to pry my sticky fingers off of is the household portfolio. But these last several months my brain has struggled with executive function—making and carrying out plans. As it all becomes harder to do, my overwhelm mounts.
Feeling safe and secure still involves some responsibility on my part. No one will be happy if I take a header down the stairs or wander away from the property unassisted. Thankfully I still seem to enjoy some sober judgement but I need constant monitoring.
I am blessed with enormous affection and esteem from David and Annie. They love me, touch me, read to me, laugh and cry with me. This allows me to rest in their decisions. David created a manifesto of sorts titled Permissions and Limitations. It lists nine helpful encouragements. The first three are “Want what you want”, “Dreams are good” and “You are not crazy” (my current favourite). The list ends with “Julian of Norwich’s “All shall be well, and all shall be well, and all manner of thing shall be well”.
So. That’s life in our little corner of Calgary. Again, so many have graciously stepped up. Friends supporting us in so many ways with prayers, kindnesses and notes of encouragement. I am truly gob-smacked by your care and commitment. All I can say is Wow! Wow! Wow!
Air hugs all around – I know, so unsatisfying as hugs…
Jeannie’s still making her nests, as she calls them, puttering around the flower beds. Tidying the lawn and keeping the grass free of pesky dandelions. Making things just so. It’s her way of feeling comfortable. At home. At rest.
She’s also napping more. Winnowing down her time on FaceTime as all activities just take so much more energy. And writing love letters to a select few family members and friends. Jeannie’s life is narrowing.
As Jeannie’s primary caregiver I’m getting more weary. It’s been two years since the cancer diagnosis. The kids – what we call Annie and her partner Chris – took over Jeannie’s care on the weekend for 48 hours. It was almost enough.
I slept. Took naps. Visited friends. Napped. Wrote in my journal. Napped. Did some reading. The respite from constant caregiving was a relief.
When I got home Jeannie was so glad to see me. But I’d been gone too long. As much as the kids did all they could to provide for her care, they are not quite the same as Jeannie’s sweetie.
How do I do it? Good question. And most caregivers I ask say they didn’t do it very well. I suck at parts of the role – excel at others.
Why do I do it? Many partners leave cancer patients. Terminal illness is hard on relationships. Running away is always attractive. The grief is unrelenting. Escape beckons. A third of all caregivers die before the patient.
Other caregivers tell me they stayed the course due to commitment, marriage vows, duty. Many other reasons.
For me, none of these ring quite true. I understand them. Appreciate them. They are part of why I hang in as Jeannie’s caregiver. But they are not enough. And even though she’s also my best friend, that alone is not enough either.
This is just the hand I’ve been dealt. Nothing less. Nothing more. I’m not a saint. Don’t get it all right. I am constantly being called to do more and be more than I ever thought I could accomplish. The work is exhausting.
Jeannie wonders how attentive a caregiver she would be if our roles were reversed. I know she would do things her way. Different things would fall between the cracks. That she too would accept the hand she was dealt.
My encouragement to you today is that you will do a good job as a caregiver too. Many of you already are caregivers. Accept the hand. Learn from others. Take advantage of the great medical and social programs available to help us as we approach death’s door. Lean on me.
A white board runs Jeannie’s life now. And timers on her iPhone, and little batches of pills. It’s a process of adapting, continually, to a new normal.
“Sorry for the mind loop,” she says with regret when she asks a question I just answered a few minutes ago. “Maybe you can give me a sticky note with the answer on it so I don’t ask again?” It’s no less frustrating for her than for her caregivers.
Time is short. We don’t know how much longer until Jeannie dies, and the hours she has each day are limited and decreasing. Morning is usually best. From about 7 until 11 her brain is as sharp as it will be that day. She gets things done off her white board – and erases them, always a great pleasure. And arranges FaceTime visits with her sisters and best friend from childhood, LuAnn. A retired chaplain in the US Navy, LuAnn did a socially distanced sharing of the sacraments with us on FaceTime recently. What a dear, dear friend. What a tender gift of love in the middle of Covid19 and wrapping up a life, and living with dying more and more each day.
I read to Jeannie each night as she falls asleep. One of her favourite authors is Chris Duff, a long distance kayaker. We’ve read all his published books, and he even graciously allowed us the chance to read his unpublished book about his recent adventure on the Atlantic. Leave-taking happens often in his books, given that he meets so many interesting people in his travels.
Kind of like life. “Ties to the point of departure are cast off,” he writes on page 21 of On Celtic Tides. Jeannie chose this passage for the blog this week. “The handshake of a friend or stranger is loosened as reluctantly as the line tied to the dock. The boat drifts from the land and the wind or tide hastens the months of planning. Solo suddenly means exactly what it says.”
Jeannie is experiencing this part of life solo. Drifting away. And with you as her witness. Thank you for your love and care and communications. It all means so much more than you can ever know.
Jeannie’s dangerous dream came true! She got out on the water on the weekend with John in his new craft. A kayak. Built from a kit of plywood parts. SONIC by name. Very fast.
The hour-long drive to The Pond was hard on Jeannie. Her head just can’t take the jostling, her brain gets shaken, and she arrived exhausted. Luckily she fell asleep quickly.
When John arrived he wanted to paddle. “Come on Grandma, let’s go paddling,” he said none too quietly while jumping on her. Down jacket. Down pants. Down sleeping bag. Hat and scarf. Staying warm at all costs.
“I’ll shed some layers in case I fall in,” Jeannie said. As a paddler with decades of experience the chances of a dip were slim. Gum boots – John was wearing his – made getting in and out of the flooded pond easier.
And they’re off! “What a pretty boat you have John. I like how it matches your paddle blades,” Jeannie said. One of her many endearing ways of supporting John is to narrate his life. Reflect back to him what he’s doing. Engaging him in ideas. Telling him of her love.
“So Grandma, where do you want to go?” John asked. “I’ll follow you,” her reply. So they paddled to the far side, got out of their boats and stomped around in the outflow where the waters flow off into the Red Deer River.
John may be a professional guide one day. But first he needs to learn not to forget his client. While re-launching, Jeannie’s little cedar strip canoe got caught broadside to the current at the outlet. Makes for a tippy boat. Oops. A little water over the gunwale soon turns into a lot of water.
Grandpa waved John back to rescue Grandma, who was by now standing up in knee-deep water and muck, trying to extricate her boots. “I thought she was right behind me,” John replied as he scurried back to help dump the little canoe.
A large canoe helped get everyone back to the cabin. Dry clothes, a cup of soup, tales of the rescue. “I’m not cold,” Jeannie insisted. But after the appetizers she was back in her down, nestled into her bed, eating hot food served on demand.
It was hard, really difficult, to say “Goodbye” to The Pond. It’s been a friend, a sanctuary, and special place of retreat to us for nearly 40 years. Gracious friend Richard Harding allows us access. And we return the favour by doing chores.
We could have stayed home last weekend.
And yet, we counted the costs of the energy required to live out this dangerous dream. We knew we’d get exhausted. Hoped we would not fight too much. Chose a precious experience in the middle of the process of dying.
“Come on Grandma,” grandson John says over and over. Calling. Again and again. “What a pretty life we have,” Jeannie replies in so many ways. Gifts all.
Not much to report this week. And yet, there is more news than you might think. Living with dying can be pretty boring – ask anyone who has done it – and yet we are enjoying our time together. Sacred time.
We have three things to tell you.
Rest is so important. Just how important often becomes apparent after the collapse. When exhaustion overwhelms. Trying to do too much, not getting enough sleep and naps when required, and thinking too much is overwhelming.
Being kind is so important. We’ve always known this, but as Jeannie’s ability to be rational declines we need to cut each other more and more slack! She calls it uber-kindness. We encourage you to try it. Today.
And so, we end up saying sorry a lot. Not as an apology, but more as a mantra. Sorry that what I said was confusing. Sorry that I just asked you the same question for the third time in half an hour. Sorry this is all so hard. Sorry, sorry, sorry. Through tears and smiles, sorry.
Jeannie has a faint hope, a dangerous dream. During this process John and I have been building him a new watercraft, a kayak. It’s nearly completed and we are rushing to get it finished. With luck, good weather, energy for Jeannie and a lot of care and compassion for each other, we might launch the kayak at The Pond. We’ve been blessed with access to a beautiful bit on water on a wild piece of land to the northwest of Cochrane. Maybe we will post photos of John in his kayak – he’s named it SONIC – and Jeannie in a canoe, out playing on the water in the next edition of the blog.
Or maybe we will just stay home, stay still, rest, be kind to each other and rejoice in all the wonders that are included in this particular version of living with dying.
We love you all. Enjoy reading your comments. And welcome anything you want to write us. Love you so much.