Tag Archives: Hospice

Grief postponed

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My first day here, around the middle of last November, I didn’t think she’d make it to her birthday. I walked into the Fogies’ little house at the retirement complex, and there was noise and excitement and hellos, and a hug from the Old Buzzard, and the Girl Child finding a vase for the flowers I’d brought, and she stood quietly waiting behind all the fuss.

She looked so small.

I put my arms around her and it was like hugging a baby bird. So small. So fragile.

IMG_20151201_170217Those first weeks, when I sometimes wondered whether she’d even make it to Christmas… they were hard. There were days spent waiting for x-rays, for CRT scans, for medications to be ready to pick up. There were arguments with the medical aid, whose protocols  demanded this, that and the other painful and pointless test. There were tears and Serious Talks and figuring out what-to-do-about-Dad. There were visits to doctors who were compassionate but not encouraging. There was Hospice, a nurse who was warm and so kind, who gave us things to read with titles like “How to cope when someone you love is dying”.

There was oxygen. It perked her up. There was time working together on editing her book. That tired her out, some days we couldn’t manage more than a few paragraphs, but it made her smile. There were flowers. Visits from friends. Meals she enjoyed, at least for a few mouthfuls. A whole chocolate milkshake at the end of a morning’s shopping.

When we finally saw the oncologist (actually we waited only ten days for an appointment, but it felt like forever – Christmas was close, and I wanted, needed him to work a miracle and ensure she was able to celebrate) I pummeled him with questions. “Should we change her diet? Cut out sugar? What about exercise? Is it good or should she rather rest? We have a source who will sell us cannabis oil – she doesn’t like it but… will it help?”

He looked at her and said, so gently, “It doesn’t matter what you eat. You can eat as much ice cream as you like – and if you don’t feel like eating, you don’t have to. Exercise if you want to. Rest when you need to. Don’t let anyone bully you – you can try whatever magical remedies you like, but you don’t have to do anything that makes you feel bad. Rather, spend time with your family. Enjoy the time you have left.” And then he prescribed hormone therapy, since that worked 20 years ago during her second bout with breast cancer, along with various other medicinal compounds, and he went off on a skiing trip, and it was Christmas.

She celebrated with us.

At the beginning of January we went back to the oncologist. When she walked into his consulting room, still small and somehow fragile but walking on her own two little short stubby legs (sorry, Ma – you passed them on to me; I can be rude about them if I want to) his eyes lit up with surprise and pleasure. The x-rays showed that her lungs were almost clear of fluid, and she was breathing just fine. He didn’t stop beaming at her the whole time we were there.

When I came to Johannesburg in November, I thought for sure we’d be planning her funeral by January. Instead, we went on a road trip.

Look!

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The tiny church in Reenen

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A walk in the woods

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A stroll on Ballito beach

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Paddling in a rock pool

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A visit to my nephew’s boarding school. He played one of his own compositions, which he had written specially for her.

Last week, when we visited her oncologist again, he told her to get more exercise. He said, “You’ve been really sick, and now you’re going to have to put some work into getting better.”

Of course, technically she’s still sick. Stage 4 cancer doesn’t just go away. So she uses a wheelchair if she goes anywhere that requires a lot of walking, she takes her medications, she rests often, and she spends around 12 hours a day hooked up to oxygen.

But she’s not letting a mere disease take one flicker of the sparkle out of her life. Last week she had cataract surgery, because it looks like she’ll be needing her eyes for a while yet and she doesn’t want to miss seeing anything. On Thursday, undeterred by her eye patch, we celebrated her birthday by wrapping up the edit of her book, then we went out for dinner with the rest of my siblings. On Sunday we celebrated again with a picnic for 25 friends and family at one of her favorite places, the Walter Sisulu Nature Reserve.

Just look at her.

Isn’t she lovely?

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The discipline of trust

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Two weeks ago I visited my friend for the last time.

Yesterday at the church her son gave me the woven shawl she would use when she rested on the couch in her living room. I used to love how soft it felt when I sat at the end of the couch with the shawl over my lap while I massaged her poor, swollen feet, back when her liver began to fail. Now she doesn’t need it any more, and I can wrap it around myself like a hug any time I want to.

I asked for something to remember her by. When he gave me this, my heart broke. Then I came home and wrapped it around me, and was comforted.

I asked for something to remember her by. When he gave me this, my heart broke. Then I came home and wrapped it around me, and was comforted.

We didn’t get to talk the last time I visited her. She was uncomfortable but she couldn’t speak above a whisper, just a few slurred words at a time, so I didn’t know what to do for her. I retreated to the big easy chair she kept in her bedroom and let the Hospice aide tend to her. The aide was kind and competent, but my friend wanted pain medication and the aide wouldn’t (couldn’t?) give it to her.

“You have to wait until 4.30,” she said, again and again, in response to my friend’s broken, insistent whispers. (It was then two o’clock.) The aide went away and called Hospice then came back and said it again. While she was out of the room I sat beside my friend, stroking her hand, bereft of words – because what are words for if not to advise, encourage or inform? I could do nothing but sit beside her and stare at the drawer of her bedside table, inside which she had 15 or 20 bottles of pills. She knew which ones she wanted but I did not, and even if I’d had the courage to give them to her I could not understand her.

In movies, drugs for dying patients are kept on the far side of the room, out of their reach. I have always thought that was wickedly cruel. If I were dying and in pain, I have thought, I would want to have my medications right next to me, and if I wished to take an extra one or two – and so speed the process – that should be my right.

My friend’s pills were right within her reach, but she was too weak to get them out of the drawer, too tired and confused to read the labels, and much too feeble to open the cap on the pill bottle. I did not know it was possible to be that weak.

I do not know how it is possible to be that strong. I understand now that even then, when her need was great, if she had been able to take an extra pill and so end her struggle she would not have done so. Years ago, long before I met her, she entrusted her life into God’s hands, and she left it there. Something I have learned about God is, when you hand Him your life, He doesn’t lift it out of reach. You can take it back any time you choose – and choosing not to can be an act of extraordinary discipline. My friend was the most disciplined person I have ever known.

At last she wearied of arguing with the aide. I could see she needed to sleep, and I had errands to run and nothing to offer her anyway. “I have to go,” I told her, “but I’ll pray for you first.” It was just a little prayer – there was nothing to ask for but rest, freedom from pain, and for her to go home, home, home – “Please,” I whispered, “Let her come home!”  And she sighed relief as the lines of tension in her face eased, and it seemed to me that she relaxed into her Father’s arms.

But it was a whole hard week before He finally took her home, and during that time she didn’t want visitors. It was painful to be shut out, reminded daily that I could do nothing for her. But thinking back now I’m grateful that memory is the last one I have of her. I’m thankful that in that little prayer I did after all have something, however fleeting, to give her.

We said goodbye to her yesterday, in a service she planned to the last detail just before Thanksgiving. The first hymn said pretty much everything important about who she was and how she lived, right up to her last breath.

More people came to the service than I expected. She was the kind of person one always pictured standing alone – not aloof or lonely, but serenely self-contained. I knew, of course, that she was active in volunteer work, and that she deeply loved her family and spent as much time as she could with them. But until a few weeks before she died, when I was with her it was always just the two of us, and during those times she was so completely present that it never occurred to me that anyone that calm could possess the time or energy to have so many other friendships that ran as deep. But my friend never wasted her energy or her time, and so she had precisely as much as she needed for what mattered to her.

It was beautiful but humbling, yesterday, to realize that she had also been completely present within the lives of many other people. As they spoke about her I learned things – ordinary facts about her and her history and thoughts she had shared in conversations with others – and I was amazed by the complex, rich beauty of her life and personality. I had thought I knew her well; I know she didn’t hold back in the conversations we shared – and yet there was so much more to know than I had ever imagined. In a way, she was like her shawl. I always thought it was purple, and it was only after I brought it home that I noticed all the other colors in the weave.

And now it is the day after her memorial, and she really and truly is gone from my life, and it is time to move on. Except…

Except I find myself still wanting to honor her. Knowing her and losing her has changed me, and I find myself wanting to live that change, to give it breath. A month ago, watching her quietly yield up the elements of her life, I thought she was showing me how to die, but I see now that she has taught me far more important things about how to live.

The art of dying

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Over the past few months I have watched my friend craft her death like a work of art. It is nearly complete.

She started with abundance. She spent frequent weekends watching her beloved grandsons compete in athletics events. (She was a runner for years – she told me she started running to beat breast cancer the first time it sneaked up on her.) She cared for her mother, at first in her home; later, after her mother moved into a facility, through daily visits and outings. She volunteered all over town – at the Cancer Center, the library, our church, a low-cost clinic. She traveled and went on a cycling tour.

She had a fat orange kitty named Peaches. In summer, her garden was full of roses. Her home was always immaculate, and friends were always welcome. Every day she ran or cycled, except on the worst days of chemotherapy. On those days, she walked. Every single day, summer and winter, busy day or not, her alarm woke her at 6.00AM, and every single morning she spent an hour or more in prayer and quiet, thoughtful study of her Bible.

Her mother died last year, and some months after that the doctors told my friend they had worked through every treatment option available and had nothing left to offer her. Then Peaches died early this year. My friend kept right on volunteering, running or cycling daily, waking at 6.00AM, welcoming friends, tending her roses, seeking to know God better.

And day by day, stroke by stroke, using her disease as a chisel, God carved away her life.

(Pic from Dollar Photo Club)

The master craftsman at work. (Source)

Or so it seemed to me. Only, when I started really paying attention, I understood that something different was happening. I watched how she stood before her God and He said, “Will you give me that?” and she said “Yes”  – so that running gave way way to walking, striding for miles gave way to a careful stroll down the block leaning on a walker.

He asked and she yielded – the library, the clinic, the Cancer Center, church activities, traveling to be with family, working in her garden. She stopped driving and depended on friends to take her shopping, and then to do her shopping for her.

Having been always quietly, insistently independent, she let her neighbors mow her lawn, take her garbage to the curb, collect her mail. Hospice sent someone a few times a week to help her bathe. Then they started sending someone to help her get ready for bed in the evenings and do a bit of cleaning, although she fixed her own dinner. A few weeks ago she started having a caregiver with her all night, but she still got up at 6.00AM every day so she could be dressed and see them through the door in plenty of time to sit down with her Bible after breakfast, just as she had always done.

“Are you afraid?” I asked her once. It was not a foolish question. I watched her closely and never saw her flinch, so I thought maybe I was just too stupid to understand. She thought about it, then said, “I’m afraid it might hurt. And I worry about losing my dignity.” That evening while I was helping her get ready for bed (it was a Sunday, when she sought the help of friends rather than the folk Hospice sent), as she leaned forward she farted. It was loud and unexpected and we were both startled, and it was entirely impossible to pretend it hadn’t happened. “Well, there goes your dignity,” I said at last, and we both fell about laughing.

Her liver failed. Her features have always been sharply chiseled with strong, prominent bones. She yielded her profile and it sank into puffiness. She yielded her clear, direct gaze as her eyelids swelled and she became too weak to open her eyes wider than slits.

Last Saturday Hospice sent her a hospital bed. We watched a movie – “The Gods Must Be Crazy” – while we waited for it to be delivered. I massaged her feet and told her how that movie had inspired me to abandon my own career as a journalist and start a mission school in a rural village in Africa. She ate a shortbread cookie.

On Sunday she was tired and weak. She wouldn’t eat, and spent much of my visit in her new bed, sleeping while I read my book in the chair she had bought for visitors. Her son called, but she couldn’t speak without slurring so he asked her to give the phone to me. He told me he planned to drive over on Thursday. I hesitated, then said, “Not until then?” I heard his breath catch. “Oh,” he said. “I’ll be there on Tuesday.”

On Monday she was alert again, happy at the prospect of seeing her family. She knew the lift in her spirits would be short-lived, so she told Hospice she was ready to go onto 24-hour care. We sat in the living room and watched another movie – “As Good As It Gets” – and made plans to take a drive, get her out of the house, just as soon as the weather improved a little.

On Tuesday she couldn’t walk further than the distance between her bed and her toilet. She drank from a little sponge on a stick that she dipped into a cup of water. I learned that she hadn’t been able to sit up to read her Bible for a few days, so I sat beside her bed and we flipped through Psalms, and I read everything she had highlighted – her trove of prayers and promises. Sometimes I thought she was asleep, but whenever I stopped reading she opened her eyes, so I would carry on.

Yesterday morning I looked at her lying on her bed, as insubstantial as a quick sketch in soft pencil. She has peeled away and yielded all the rich clutter of her life on earth, and what’s left is the pure essence of a woman whose trust in her Maker’s love has not wavered.

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I finished reading the Psalms and, at her request, started 2 Corinthians. I have promised to continue today, but she did not promise to wait for me to come.

How to talk to my friend who is dying

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My friend is dying. The doctors have given up on chemotherapy and switched to “palliative care”. They say she may have six months, but really they don’t know how long it will be.

It has been so hard to know how to talk to her.

Two girls sit on the bench against the backdrop of the mountains

Several years ago, when she told me the breast cancer was back and had metastasized to her bones, I didn’t want to be the kind of person who avoids difficult conversations and blocks people from expressing themselves by trying to keep everything nice. So I jumped in with both feet and asked how she felt about dying, and we talked about that a bit, but it turns out there isn’t a lot to say on the subject.

The years passed and she continued to be active in our church and to volunteer for a free clinic serving our community, and she started helping at the local Cancer Center (she still volunteers there). She quit running, but she still walks almost every day. She lost weight (although she’s always been thin, so it wasn’t that obvious) and gained two attractive wigs. (She doesn’t need them any more, but she told me the other day that she quite missed the convenience of using a wig. Her hair is still very thin, and it annoys her to have to get it cut.)

I got used to the fact that she was sick, and although I loved the respite of quiet afternoons drinking tea in her immaculate, dog-free home, I saw her rarely. I checked in every now and then to make sure she was okay, and she was always busy and contented. But I avoided visiting her because it didn’t feel right to talk to her about the anger and frustration I felt as I got more and more engaged in dog rescue … because, after all, she was dying. In the face of that unyielding fact, the chaotic jungle of my life didn’t seem important enough to share.

Then, as my life spiraled further out of control, I simply did not have the capacity to help shoulder her burden. This year I hardly contacted her at all. (I don’t know why I thought shouldering her burden was my job.)

A few weeks ago I called her. She was glad to hear from me, she said, but she was too busy to visit that week. “I’ve just had people in and out non-stop,” she explained. Her sons visiting, with their families. Her sister. A steady stream of friends. Her sons again. And the folk from Hospice.

Hospice?

“Yes, I’m in Hospice care now.”

And suddenly it hit me. This is real. A day is coming, in the very near future, when the sun will come up, and set again, and in between there will be weather and traffic and conversations, but my friend will be gone.

I went to see her after her visitors had left. I took her some eggs, new laid by our hens, and nectarines off our tree. I was so scared – of what she would look like, of how I would hide my reaction if she looked like someone who was dying. I wondered what we would talk about, and reminded myself that I would encourage her to speak freely and openly about what she was going through.

She was sitting in her front garden when I arrived. Free of chemo, her hair has grown back, and there was a glow of color in her face. She was radiant.

I sat down, and asked her how she was doing. The pain is bad sometimes, but she takes meds when she needs to. It’s hard to sleep, but she has an iPad, and she spends the long nights reading emails and Facebook and checking in with friends. She’s given up driving because she doesn’t think it’s safe, with the drugs. She’s sad that she can no longer travel to other parts of the state to watch her grandsons compete in athletic events, because it’s just too hard to spend hours at a stretch in a car. She is getting lots of visitors, and although sometimes they stay too long, she loves having people around.

I told her that if ever she wanted company without having to make conversation, I’d be glad to bring my laptop to her home and simply be there. Her face lit up, and she told me she had just bought a big, comfy easy chair and installed it in her bedroom, for precisely that purpose.

Our conversation lagged into silence. I felt helpless and tongue-tied. It seemed self-indulgent to complain of the bleak wasteland my life had become toward the end of last year, and selfish to chatter about the tender green shoots that are emerging as I enter a new phase of my life. But… there’s only so much you can say about dying.

Then her phone rang. She glanced at it, clicked her tongue, and told me about an annoying problem she was having – calls from companies wanting to sell her “death stuff”. She wondered what contact list of terminally ill people they’d bought or hacked into. That triggered a memory of a telephone scam I had recently evaded – a too-good-to-be-true offer of a free cruise that culminated in a request for my credit card details.

Little by little, our conversation picked up. We agreed that neither of us was much interested in going on a cruise, and I told her about the cruise ships that annoyed me when Himself and I were visiting Alaska. She told me about her trip to Alaska a few years back, and how disappointed she’d been not to see a glacier because the weather was bad the day they were supposed to go. “I’d like to go back,” she said.

“Ja, me too,” I said. And then we were silent for a while, and I thought about what she’d just said. Because, of course, she’s not going anywhere. And then I thought about the glaciers I had seen, and about their pure, perfect blue that is like looking into God’s eye. And I thought about where she would, in fact, be going – and I remembered that there would surely be glaciers there, and every imaginable and unimaginable other kind of beauty, all shining in the direct light of God’s eye.

Alaskan Glacier

And that’s when I finally got it. There is no topic I can’t raise with her that we wouldn’t have discussed five years ago. Yes, she will soon be moving on. Yes, it’s scary, especially as the transition is likely to be painful. But she has made her preparations, and is confident of her destination. And right now she is still most emphatically alive.

I will visit her soon and let the conversation meander where it will.