Visiting a dying person: It’s not you, it’s me

man struggling in water

As I’ve written recently, my strength and mobility have declined sharply in recent weeks. This decline has rendered me housebound, although I am working on that. The walker has helped, as will the wheelchair we hope to borrow through palliative home-care services. J. is willing walk the dog with me in the wheelchair–sounds like quite the workout to me–which will allow me to leave the house without overexerting myself. We are trying to think of other ways I can get out of the house. As summer is now in full swing, it is hard to be stuck at home.

The other problem is that my time at home is spent primarily watching television and sleeping. Would I feel more alert if I had more to occupy my mind? Using the computer is still a challenge. Typing is still difficult, as is surfing the net because my fingers still jump around randomly. I’m more restricted in what I can do. I don’t read much, except for the newspaper or the odd magazine. I’ve lost the attention span that a novel would require.  Trust me, I’m sick of mindless reading and TV. The distractions have lost their appeal.

Since I am mostly homebound, you’d think I’d want people coming to visit, but, surprisingly, I’m finding I don’t. The odd person has dropped by, and I did ask the rabbi to swing by before he heads off on vacation, but mostly I’ve kept to myself. Visitors are exhausting for me, not just because making conversation can take all I’ve got, but because I don’t know if I’ll see that person again, ever.

Something that may be hard for you not-dying people to understand is that I am constantly thinking about whether this is the last time I will see you. Imagine the emotions this raises in me, and maybe in you too. I’ve had plenty of tearful hugs following visits, and those hugs have not been easy.

And so sometimes I’ll say no to a visit, not because I don’t love you or care about you, but because I’m not up to the emotional turmoil a visit will raise. I’m not up to my own emotional reaction, let alone yours. Will I have to support you emotionally through the visit or will you know how to manage those emotions without my help? I don’t know, but I do know I’m not up to being anyone’s support right now.

I know that I can barely keep my head above water emotionally right now, and I’m not up to being anyone’s lifesaver. It sounds selfish, I know, and it is. I don’t know that I’ve ever been so selfish in my life than I have these past months. But I’ve spent many years supporting other people, in- and outside my office, and those days are done. I wish I could still offer compassion but I’m admittedly self-focussed.

I lack emotional energy for anyone but myself. I trust you’ll understand, but if you don’t, I’m afraid you’ll have to catch the next bus. This one has run out of gas,

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Decisions, decisions….

Person deciding on which path to take on the road

Dear Patient Followers:

Thank you for all your support after my last post, which wasn’t easy to write. It was hard to abandon you for as long as I did, but I wanted you to know I have not died. I was at home on my couch on a weekend pass from the hospice. Yesterday I had to decide whether I would remain at home or return to the hospice.

While I was at home, my lovely friend, K.. loaned me her mother’s walker, which I’ve used both in and out of the house. I still need J.’s help going up or down stairs, but can now walk short distances with the walker. I’ve also scored a generous friend’s deluxe toilet riser and a little stool for the bathtub. Yeah, old people stuff.

I’m not embarrassed to tell you about these physical supports because they’re helping me get up and move around on my own. I can’t believe I can’t push myself up from the toilet, but my decline in strength over the past few weeks has been profound.

This is what happens when anemia progresses and there is not enough oxygen to feed my muscles. I am weak because my hemoglobin is likely very low. I can’t tell you how low because I have not had my blood tested in some time. Without transfusions–which unfortunately will not make me feel better at this late stage in my illness–I will continue to get weaker. Nevertheless, I did leave the house today, and not just to move from hospice to home. That felt great.

Yesterday we had to decide whether I’d return to the hospice. The hospice was kind enough to hold my bed over the weekend. So J. and I talked. It felt better to be at home with my little family, and although I know the hospice has more supports on site, we both decided I’d prefer to be with my family right now.

If my situation changes, I will seek out the hospice again, and hope that they will have a spot there. (This hospice is small, with only 14 beds.) I will accept the risk that they will not have space for me if I want to return.

How do I ever know what the right decision is and what my needs will be today vs. a week from now? I don’t. That’s what makes decisions like these hard ones. But as it stands, being at home seems right, despite knowing my health could turn anytime. At home I can wake and sleep without interruption.

I don’t miss the middle-of-the-the-night hospice checks involving flashlights shining in my eyes, or the nurses who were a bit too chatty some days, forgetting that they were to be caring for me. Lovely people with poor boundaries. It is difficult to ask a kind but overly chatty nurse to leave my room.

So home it is and we’ll see how it goes. Our palliative home-care nurse is coming this afternoon to check in. I know I’ll feel more comfortable in my own bed. And you know I’ll keep you posted if my situation changes, or J. will if I can’t. Thanks for being tremendous supports to me during this difficult time.

 

How many mitzvot does it take to change a life?

All it takes is one good deed--doves flying around world with banner

It has come to my attention that I need to clarify last Friday’s post. Do you really think I’d hallucinate a perfectly braided six-strand challah? Or a hockey pool trophy? A prize-worthy freshly baked pie? Is my hockey pool win that unfathomable?

But do you really think I’d go so far as to fake a morphine hallucination? Would I stoop that low? No, kids, I was not hallucinating. I’m sorry if my tongue was not implanted firmly enough in my cheek. Despite my persistent proclamations otherwise, I am sad to report that I would lie to you after all. In the coming weeks, perhaps we can work on rebuilding trust.

The last week has been a whirlwind. Out-of-town visitors, two units of red blood cells, a baking extravaganza, and not just one but two blood donor clinics held in my honour last Saturday. After weeks of preparation, Supercousin in Toronto and Superfriend in Calgary pulled off the impossible: they gathered donors near and far to give the Gift of Life in my honour.

Those who could not give blood contributed in other selfless ways–they provided home-baked goods, singing, and moral support–while those who could donate made time, some overcoming paralyzing needle phobias, in support of an important cause.

Those donors who were not available at either site that day made appointments to donate on other days. There were many first-time donors who breezed right through, realizing that the process is easy peasy and wondering why they’d never donated previously. I wouldn’t be surprised if they found themselves donating again in the future.

The generous donors, young and old, first timers and repeat attenders, who participated on Saturday, know that I am dying. They want to feel they can contribute to prolonging my life in whatever way they can. Our dear Calgary friends who happened to be in Toronto this past weekend dropped in on the Toronto clinic so they could participate, roping their relatives into donating on their behalf. Many of the mensches I had not even met before.

So how many mitzvot does it take to change a life? One would have been enough, but there were so many freely given on Saturday, I lost count. All of these mensches taking an hour or two or three out of their day to give that most precious gift, not just of life but of hope and support. Were our roles reversed, I’d only hope I would do the same for you.

This week, when I may well need a red-blood-cell top up yet again, I will be thinking of all of you, whether you donated or not, knowing that you did whatever you could for me.

For the months leading up to Super Saturday, I felt loved and nurtured. People understood the urgent need for blood, not just for me but for others in my predicament. I’m not the only one benefitting from mensches like you.

So thanks. A lot. I wouldn’t be alive without you.

I’ve decided it takes only one mitzvah to change a life. Everything else is icing on the lemon-poppy seed cake. And I’d hope, were our roles reversed, I’d give as freely to you as you have given to me.

A night to remember and cherish

Plate of latke, salad, and bagel with lox and cream cheese along with brochure for cooking class

I try not to speak for others, but I daresay we all enjoyed ourselves at last night’s Jewish cooking class. Thanks to the we’ll-try-anything attitude of 14 special friends, and Judy’s powers of persuasion, the previously cancelled class ended up filled to overflowing with dear friends from all walks of our lives. They mingled and fumbled and helped one another to assemble rugalach and knishes, ending up with substantial overflow to bake up at home.

The instructor made a mean knish. Sure, the potential knish fillings he provided included bacon, but at least he acknowledged the irony. My conscience allowed me to add a few porky bits. (Any moral superiority implied in adding a few vs. a ton of bacon is questionable.) I didn’t ask, but I imagine the other two Jews present added bacon to theirs as well. J. added a lot more bacony goodness, and hers tasted better for it.

The instructor also demoed latke making, which we weren’t expecting, for good measure. Sure, Bubi would never have added garlic to her latkes, but I granted him creative license and choked that fried deliciousness down. We were there for tasty Jewish food, but more importantly, the company of good friends.

Could it have been a more perfect evening? When I looked around the room, I saw people having fun, enjoying one another, and glad to be there. I could not have asked for anything more.

But the wonders of the evening didn’t stop there. One friend secretly sewed me a gorgeous apron that all attendees signed. The inscriptions were beautiful, and J. had to wrest it from me at bedtime before I put it on over my pyjamas because of the greasy, floury mess I’d made. What a beautiful and thoughtful memory of the evening.

Another couple shared news of their long-awaited pregnancy, complete with ultrasound photo. I have been biting my tongue until it bleeds not to ask if there are any challah buns in the oven. Parents extraordinaire they will be.

Kudos to every person there, who showed up simply because it was important to us.

At the end of the class, the instructor pulled me aside to ask if I was happy with the outcome. I told him I was indeed, and explained that the class was especially important to me because I didn’t expect to live long enough to attend. He told me he was happy to be able to provide a distraction from my reality for at least a few hours.

A few hours?? How about the whole week leading up to the class when, after being so distressed over the cancellation, I learned J. had resurrected the evening with a little help from our friends? The joy I felt when J. described the immediate responses to the invitations? The friends who regretted they could not attend but offered to pay for a spot to ensure the class would happen? The excitement of anticipating everyone’s enjoyment of the evening, and creating memories for all?

The distraction is not over yet. We have a lot of baking left to do. Anyone want some porky potato knishes hot from the oven? I’m sure J. would be more than willing to share.

 

The elephant grew and grew until it didn’t fit in the room anymore

Picture of seated elephant taking up the bulk of the roomI’ve had an elephant named Leukemia accompanying me to every large social gathering for the past 6 years or so. I am inevitably preoccupied with who knows Leukemia, who doesn’t know, and when I’ll be asked a question that forces me to disclose Leukemia’s presence.

Over the past few months, Leukemia has been consumed by his bigger, more imposing cousin, Dying. Dying is clingier than Leukemia; wherever I go, he’s always by my side. It’s not a secret that Dying is there–you, my readers, are well aware–but not everyone I encounter knows. So when I arrive at a get together with unfamiliar people or those I haven’t seen for years, I’m on high alert. Who will ask the first question that will force me to introduce my imaginary friend?

Last Friday, we were invited to a lovely celebration for a friend who had been recently granted Canadian citizenship. We wouldn’t have missed it. I tried to leave Dying at home–this was our friend’s special night–but the elephant is clingy.

What I failed to consider was how emotional I’d find being at this gathering with Dying by my side. I’d be seeing a number of people I hadn’t seen in some time, only some of whom would know about Dying.

Soon after the initial greetings and congratulations, I became teary, which surprised me. I realized that I would not see many of the guests again after that night. Then came the awkward questions from the ones who did know Dying. “Are you still fostering dogs/doing yoga/working?” Some who knew about Dying avoided me altogether. I get that; who wants to talk about Dying at a party? Still, if you can see the elephant, I’d be grateful if you’d acknowledge him. It’s not like Dying is great company for me either.

Then my guardian angel appeared: the sister of the host, who, despite her rushing around laying out food, visited with J. and me briefly when we arrived. She greeted us with a big hug, and, in the process of offering us drinks, acknowledged what I was going through and expressed her sadness for us both. Her kindness couldn’t have been better timed, and more needed, in that moment. We were away from the group so my unbridled tears did not destroy the evening for everyone. She gave me a chance to be sad, which I’d been trying unsuccessfully to contain, and she shared her sadness too.

A while back, a palliative home care nurse told us how dying people’s worlds shrink as they become increasingly ill. She was right. I leave the house less, and, other than medical appointments, my calendar is sparse at best. No more yoga classes or PALS outings, rare social engagements, and lots more time at home sleeping. Social outings with unfamiliar people are simply too stressful now that Dying insists on joining me everywhere I go.

Congratulations to my dear friend and may he enjoy many happy years as a Canadian. J. and I were grateful to be included in his celebration. I do wish that Dying hadn’t insisted on crashing the party. Trust me, I’d turf him if I could.

Never say never again

Freshly baked rugelach, a Jewish rolled pastry

Monday was a tough day. I called to enrol an interested friend in the upcoming Jewish cooking class, only to learn the class had been cancelled for lack of enrolment. Then I was chastised for not signing my friend up earlier. Are there not 16 Jewish-food-obsessed people in this whole town? This class was important to me, not only because it was a Jewish theme, but because I’d set it as a goal to work, or shall I say “live”, toward.

I had been hesitant to enrol because I thought I’d be dead by that date. J. encouraged me to take the risk so I did. No wonder I was heartbroken when I received news of the cancellation. The bearer of bad news encouraged me to maintain my credit at the school rather than receiving a refund so I could take another class in the future. I insisted that a refund would be preferable, but appropriately withheld my rationale. You would have been proud of me.

As I moped around the house over the following few days, my much better half–perhaps we should call her Jane Bond today?–started scheming. Guided by one of her favourite mantras–it never hurts to ask nicely–she took action. Unbeknownst to me, she called the cooking school and asked whether they would reinstate the class if she could muster up sufficient enrolment. Then she emailed a number of our foodiest friends to let them know how important this class was to me, and asked if they’d consider signing up. The response was overwhelming. Within 5 minutes she had 7 definites. By day’s end, she had 19 takers for 16 spots. Sorry to those who were too late to make the cut but you gotta be quick with my girl.

Late yesterday afternoon, J. told me what she’d been up to. I’d noticed that her phone had been pinging off the hook with texts, and she seemed in especially good humour as the day progressed. A more astute person than me would have sensed that something was up.

In the late afternoon, J. let me in on the secret. She told me that friends had responded immediately and excitedly and that already she had enough people to hold the class. For the rest of the day, she kept me in the loop as the class filled with our friends. My tears took a sharp turn from sad to happy.

Kudos to J. for making this happen. When an obstacle arises, I lay down and die (pun intended) while she rises to the challenge. As the class enrolment shows, J. can be very persuasive.

And kudos to our incredible community of support, who jump whenever called into action. J. shared how important this cooking class was to me, and to us, and our friends wanted to make that happen. What a precious gift.

I am so grateful and excited, and not just because I can almost taste the knishes and rugelach we’ll be making. Sure, gravlax is Swedish–I imagine our teacher is not Jewish–but it’s a close enough facsimile to lox. The night should be a spectacular. I hope that everyone who attends will enjoy both the food and the memories we create together.

 

 

Even when things are going well, thoughts of dying sneak in.

Picture of new Calgary Central Library

So many wonderful initiatives are happening on my behalf, I don’t know where to start. Supercousin has already confirmed 24 family and friends in Toronto, and many more who wished they could donate but are unable, for the June 16 Toronto blood donor clinic in my honour.

Now Superfriend in Calgary has stepped in to arrange for a donor clinic here on the same day. She has already confirmed 10 people, many of whom I don’t even know, to fill the 15 chairs she’s holding. Contact me if you’re in Calgary and you have it in you to give; I’ll connect you with Superfriend. I’m sure we can fill those chairs. Those who can’t donate for whatever reason have offered moral and culinary support.

As if that’s not enough, over the past few months, my Superkin have been arranging another special honour. You know what a library nerd I am, how I worked in libraries for years and how I still love to hang out in the stacks. Every so often I even reshelve a book that’s out of place, for old time’s sake.

On November 1, 2018, Calgary will be opening its architecturally stunning new downtown library. As a fundraiser, people can buy windows for inscription. So my Superkin arranged to buy me a window, which will be inscribed for the next 25 years with my name and a few descriptive words of J.’s choosing.

But Superkins’ donations were so generous that they quickly purchased one window, and, with the overflow, decided to purchase a second window for J. Truly, she deserves a window more than me,. She’s been by my side through years of illness, caring for me without complaint, patiently adjusting to my slowing pace, and never abandoning ship. I was overjoyed to come up with her inscription, which not surprisingly ends with, “Never an overdue fine.”

I am trying to see only the joy in all of this, but there is something hanging over me: I’m going to die, and it may happen before any of these events transpire. It didn’t help that I woke up with a visible lump on my neck this morning, perhaps a lymph node saying hello. My mind immediately went to dying, as it tends to do. J. called the cancer centre and the nurse told us to hang loose until we see Dr. Blood Lite tomorrow. No need to contact the funeral home after all.

Since I’ve learned that I am palliative, I’ve tried to keep living my life, planning for events down the road as if I would be there to participate. No one has given me an exact end date, and even if I knew the date, wouldn’t I want to keep living until I die?

There’s a Jewish cooking class being offered at the end of May, and I signed up, after some hesitation. How often do you think Jewish cooking classes are offered in Calgary? Never. Signing up for the class gave me a goal. Then there’s the blood donor clinic in mid-June, and the library opening in mid-November.

Hey, do you think they’d let us don hard hats so we could view our library windows before the official opening? I might just have to inquire.

 

Desperately seeking eulogy, or maybe not

Woman in jeans holding crotch to stop self from peeing

Remember how the rabbi tasked me with writing my own eulogy? He wasn’t expecting me to deliver it at my funeral–that would pose one obvious logistical problem–but thought my input could guide him. Some have suggested he was trying to get me to do his work for him but I disagree. He was simply exercising his due diligence. How better to get to know me than by soliciting my input on the eulogy?

I like this rabbi’s philosophy. He prefers to deliver the eulogy because, by so doing, he is allowing those attending the funeral to focus on mourning. If I didn’t like him or trust him so much, I might have trouble with his assuming this task, but I think he’s the perfect man for the job.

That being said, I’m sure many of you are dying to eulogize me. I’m sure you all have a funny story or ten that I’ve neglected to share in my blog, where I’ve been incredibly difficult or my outside voice has said something outrageously inappropriate. Everyone has an Annie story.

Also, I don’t want to be idealized after my death as so many are; I want you to retain a balanced picture of me for eternity. I’m sure your words would highlight many areas where the rabbi would appropriately fear to tread.

I was texting with a dear longtime friend the other day who kindly reminded me of an incident soon after we’d met. I had invited a few friends to my home for a social evening. (Once upon a time, I socialized.) I recall hours of raucous frivolity. I laughed so hard that, late in the evening, I ended up wetting my pants.

Remember I recently disclosed that I bleed a little when I cry? Well, it turns out, on very rare occasions, I also pee a little when I laugh. My dear friend has never let me forget this incident, and with good reason. He is the elephant who never forgets.

As we were texting about this special memory, I mistyped, “I understand your vivid recollection of the pee incident. That’s why I’m now asking you to do my eulogy.” But I meant to write “not” instead of “now”. My friend received this text while he was in a work meeting, which elicited tears and a barrage of texts about how we’d have to meet to discuss what he’d say, and whether he’d even be able to speak without weeping.

After several perplexing exchanges–I didn’t ask the elephant to do my eulogy, did I?–I reviewed my texts and realized my grave error. My correction was swift and firm. No, dear friend, you willl never be tasked with my eulogy because your impulse control is poorer than mine (if that is indeed possible)! Plus, I’ve herein already shared your favourite memory, the pee story.

For the rest of you lining up to speak on my behalf, thank you for your interest but the position has been filled. No hard feelings. I’d prefer we stick with someone who does not know me well enough to humiliate me completely in front of a crowd. As you well know, I am perfectly competent of doing that myself.

The mystery of the angels in my midst

Patti Labelle quote: You don't have to be an angel, you just have to be someone who can give

When I think of angels, I often think of the heavenly ones with gauzy wings and glowing halos. Kind of like Tinkerbell. Recently, however, I have come to realize that there are many angels here on earth. Don’t worry, I’m not getting all religious on you; I’m making an observation based on personal experience.

Angels have been jumping out of the woodwork recently. There are the long lost friends who have heard I am dying and are reaching out with loving letters of comfort and support.They have shared happy memories of our time together and reminded me of what our relationship has meant to them. Others who live closer by are sharing similar sentiments with me face to face. It’s uplifting to learn I am loved before I die.

I can’t imagine it is easy to communicate these feelings, whether in person or in writing, but these friends are pushing through the discomfort to share frankly and honestly. Knowing that I have had a positive impact on their lives, or that I have brought them joy, or provided support when they’ve needed it–these acknowledgements make me feel my life has had value.

Then there are the doers. The deliverers of lasagna and grapefruit and other various and sundry delicacies, the visitors who drop in at the cancer centre on short notice to pass the time of a transfusion, and the dog lovers who ensure Jelly is cared for if we are waylaid or slip out of town for the day. Their importance cannot be understated.

But there is one particular angel, hereafter named Supercousin, who takes the chocolate cake this week. Supercousin has arranged a Canadian Blood Services clinic in my honour in Toronto on Saturday, June 16. She has initiated this clinic  because she, like many others, feels helpless from afar and wants to do something tangible to show that she cares. She has announced the clinic to close friends and family, and the response has been swift and magnificent. Already 20 donors have stepped up, plus several others who unfortunately are ineligible to donate at this time. Through this venture, Supercousin is raising awareness of the critical need for blood donations. I know I am using more than my fair share of blood products of late, so any efforts to replenish the stocks I deplete can only help others.

If you happen to live in Toronto and would like to donate at this clinic, let me know and I will connect you with my awe-inspiring Supercousin. (To reach me, you can comment on the blog, text, or email me.) If you do not live in Toronto, but would still like to donate, let me know. Maybe a group of us can crash the Calgary clinic (or wherever else you live) while the scheduled Toronto clinic is underway. We may not be able to add to the official Toronto-clinic tally, but I have a feeling the overflow of blood products will find good homes.

I’d love to be in Toronto June 16 to cheer these generous donors on, but my horoscope stresses that travel is out. You can be sure I’ll be there in spirit, however, or Skype, or maybe even FaceTime, assuming a young person can show me how.

What [inappropriate thing] would Annie have said?

Not long ago, my fourth blogaversary and 600th post passed without fanfare. I can’t believe I missed an opportunity to laud my accomplishments; I must have been distracted by other matters. I’ve told you all many times how grateful I am for your keeping in touch through my blog. Your reading has spared me recounting difficult news, especially of late, to each of you individually. I plan to keep you in the loop of my life by writing for as long as I can.

Lately I’ve been thinking about how my life is going to end soon, and how the story I’ve been telling over these four years will end with it. In my blog, I will continue to share my difficulty accepting my prognosis, the end-of-life decisions I have made, and other honest details of my decline. I imagine you may regret my oversharing, but you’ve kindly hung in there with me.

It saddens me that you will know the end of my story, but I won’t know the end of yours. I want to be there to see how your life turns out, but I won’t be. I think of all my beloved nieces and nephews who are nearing or already settling into adulthood, and I will miss watching their lives flourish. If they get married or have children or grow in other ways, I will not be there as witness. I’d like to think I’ll be cheering from above, but will they be able to hear me?

And if any of you experience hardship, I won’t be there to offer comfort, as you have done for me and J. so magnificently through my illness. I won’t be able to lend an attentive ear or drop off a lasagna or just be there, to do what good friends do. I’ll be leaving you high and dry.

When I was helping a client through grief, I’d often try to bring the person they’d lost into the room with us. No Ouija boards or empty chairs; we’d simply talk about the person. I might ask, “What would your (now-deceased) loved one say about your current breakup/job struggle/pregnancy?” Some clients thought I was crazy, but others took comfort in imagining how their beloved might have supported them through their struggle. Conjuring up that person’s voice when they were stuck helped them move forward.

And so I wonder, could I be that voice of love and support in your ear after I’m gone? If you are feeling low or alone or upset, could you imagine how I might comfort you? You know I’d want to be there, and I’d be overjoyed knowing I might help you muddle through, even after I am gone.

I realize that trying to enlist my help after I’ve died may backfire altogether. There’s the risk you may conjure up Loose-Lips Annie, who has blurted out countless inappropriate statements over her lifetime that she wishes she could retract. Hopefully not, though. I’ll try my hardest to contain my overly blunt persona, even from the great beyond. That is, unless I think you could really use a swift kick in the pants. Then all bets are off.

Basset hound on bed comforting person in hospice