Posted by: carolyn / through a widow's eyes | March 7, 2014

On Dying At Home

Warning: Trigger Alert

On Dying At Home
jeff on the phone with matt

~Jeff on the phone with Matt. Home hospice~

I received a missive the other day: “Chemo over. Pain management on. We are on to the new normal, full speed ahead. For as long as it is.”

Oh, my dear. My heart weeps. For you. For him. For my own ragged self, who sent a similar note. For all of us, over and over and over. Knowing our lives are finite is so much easier in theory than in practice.

If I may say a word to the caregiver from having walked some similar path, it is this. To one who will soon be left behind: Live this time, each moment of it, even the dreadful ones. Live gently, following your loved one’s lead. Live, and give, so that later, you’ll regret nothing. I say that because I spent too much time trying to keep the house tidy for visitors and not enough time sitting in the sunny afternoon bedroom with my own dear husband, sitting there talking or lying there not talking (kudos to Joni).

Take care of only the true essentials and let the rest fall away. Essentials include taking care of your own sweet self. “Put the oxygen mask on yourself first” is the standard line. This is not selfish. You have been and surely will be required to give much of yourself, and you cannot give from a place of emptiness. There will be enough emptiness later.

Tell people what would help most, let them do it, and take a few moments for yourself when you can. Take a bath, get a massage, call a friend who doesn’t want your stiff upper lip but only wants to give you what YOU need at that moment. Maybe you need to shout at the injustice of it all; or scream; or shake, helpless with sobs. Maybe you need a cup of tea, or to take a walk in someone’s garden.

To those who hover around the outer circles of this twilight time: if you wish to be helpful, you must show up. Show up. Take it upon yourself. Saying “Please let me know….” does not work. It places the burden on the very people who are way past burdened already. It’s quite likely they will never call you or ask for help. They may not even know what would be helpful, until you offer it. May I walk the dog? I can be there at 6 pm. May I pick up something from the pharmacy? Could I take your trash to the curb and bring the barrels back in tonight? Oh yes, that would be lovely! Thank you very much.

We had three cords of firewood piled in our driveway for months; it was just one thing of many that fell by the wayside when Jeff was sick. As fall wore on, I developed a stock response. At every “Let me know if I can…..” I would say “Terrific! Thank you very much! Could you come over and spend half an hour with me stacking firewood?”

It was really quite enlightening to see what happened next. Most people never stacked firewood for half an hour, or made any other overture. That’s fine. Really. Then I knew that their offer was a social nicety, or maybe an inoculation against their own loved one dying, a kind of knock-on-wood moment. Some people simply could not show up. They had their reasons. Maybe cancer was just too scary, or too close, or they missed someone too much to come witness. I have done that myself – sometimes it just hurts too much to be present when somebody is in trouble. I get it.

But what I remember most from that blurry time is the people who did show up. To help – it hardly mattered how. Even sitting, silent and still, can be helpful. People want to be of service but they don’t know how. They don’t want to intrude or be a bother. One way a person can truly help is to be clear: make a specific offer for a specific thing at a specific time. Not someday.

My sister Emily, who knows, understood this. Her response was, “Gee, I can’t help with firewood, but how about if I bring over supper tonight? I’ll leave a cooler. I was thinking X with a side of Y. Would that be appealing?”

Our friend Dennis stacked firewood for hours. He stacked row after tidy row, singlehandedly. In the rain.

Ellen called me every single day from diagnosis to death and beyond. Every day. Many times I did not answer, but still I knew she cared.

My mother showed up with armloads of groceries, week after week. The bulging bags contained treats: flowers, wine, crackers, ice cream, as well as the basics we ate every week.

Ann brought a delectable platter of her own tomatoes and basil layered with fresh mozzarella, and a tiny jar of vinaigrette to sprinkle over. So simple, yet so beautiful and nourishing and thoughtful. No tomato ever tasted better.

Magda cleaned the bathroom before I even knew what was happening, and hung up loads of sheets to dry fragrant in the sun. I could have kissed her feet. Bless you, my sister.

I recall talking with Mike, who had been in the habit of coming over to play music with Jeff on Saturday afternoons. But that Saturday, Jeff’s fingers were too numb to play his guitar – one more chemo-induced complication. I said “You will never know how much this means to Jeff. It’s the highlight of our week over here.” Mike said: “It is the highlight of my week too. And we will keep it up until he can’t play any more. Then I will come over and just sit with him.” And he did, too. He may have been the last friend to be with Jeff. Because he showed up.

Lisa also knew about showing up. She had been there – was there still, a recent widow of only a few months, a cherished new friend. We met in a caregivers’ support group; our husbands had been diagnosed with different cancers around the same time. I don’t know what I said or did to elicit this, but she arrived one hot summer day with a large bowl of chilled orzo salad bright with lemon,  spinach, and feta. It was the perfect thing. I’ll remember it forever. It served as a main meal, a side dish, or just spoonfuls shoveled in while standing in front of the open fridge. It was the most nourishing thing I’d eaten in days. Afterward, we sat  in my yard as bright poppies waved their fuzzy undulating necks in the June breeze, and we talked about death. As one does. I couldn’t remember the last time I had been outside.

These crystal moments of loving kindness are brilliant gems in the surreal nightmare world of The New Normal. So if you can, show up.

jeff and mike

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