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

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,

Decisions, decisions….

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.

 

Should I stay or should I go?

Good news! I’ve learned how to use voice-activated dictation.

I’ve been struggling with my fine motor skills, including my typing. This has made it difficult for me to communicate with you, my dear readers. Were my hands steadier, I would have posted to my blog sooner. I feel like my thoughts are trapped in my head and I am unable to share them with you. Being unable to text on my cell phone, something I didn’t think twice about doing previously, is tough too. Just yesterday I learned how to use voice activated dictation. I am clumsy but I will get it.

Because we have been questioning whether I need to be in the hospice–I am less sick than I was when I was admitted there–I am still alive, although it has been a difficult week. I am less steady on my feet and do a lot of sitting around. And sleeping, often through the mornings. My poor balance frustrates me. Judy needs support me as I walk. I am often more alert in the afternoons but my days are shrinking.

The hospice has granted me day passes so I can spend time at home, where I am more comfortable. Also, I have a pass for this long weekend. With this pass, J. and I will be able to determine whether I need to be at hospice or whether, with her support, I might be able to function at home. It would certainly be less exhausting travelling between hospice and home every day.

Here’s my bigger dilemma: do I stay at the hospice, where the resources are immediately available if am in medical distress, or do I take the risk of moving back home, knowing I may not be able to access those supports when I need them? Also do I stay at a place where I am comfortable knowing I am waiting to die, when I would rather be at home with my family?

By the end of this long weekend, we will make this decision. I am not in denial about my impending death and neither is Judy. I arrived at the hospice sicker than I am today. So I have the weekend to decide where I need to be, and am lucky that the hospice will hold my bed. If I need to return to the hospice, even over the weekend, that’s what I’ll do.

If we decide we don’t need hospice yet, I will reengage with the palliative home-care team and they will support me in the home as needed. Maybe that will mean home viisits or telephone calls with the palliative home-care nurse. Either way I will have supports available to me.

It is strange to check into a facility assuming I would never check out, except perhaps by checking out. But we may decide my dying at home is a better option. So I’ll have the weekend to decide where it would be best for me to die (assuming I don’t die over the weekend). Some time will help us to sort this out.

Brace yourselves for a bad news post

I’ve been a little quiet lately, or at least quieter than normal. That’s because I’ve spent the week wondering whether I was dying.

I am writing you from one of our local hospices, where I was moved on Wednesday, after three days of sleeping day and night. I spent three days sleeping on the couch, then moved to bed and slept through the night. Three days of profound fatigue and a very sore throat.

Initially I thought it was the flu but J. called the palliative home care nurse, who suggested  I’d enter the hospice. I put my name in for a bed here and by that evening, we knew that a spot would be available the next morning. So after three days of sleeping day and night, on the morning of day 4, an ambulance transported me to my new home.

I will be honest with you: moving to a place I will be in until I die has been tough. It may be the right decision but it has been scary and overwhelming to move in. I don’t know how I’ve not died from the emotional upheaval of moving to a place like this, even though the care has been exemplary. J., bless her soul, has been sleeping on a cot by my side. She has been fed generously at mealtimes, the same meals as the residents, and is welcome to be here as much as she wants. And this place starts the day out with the best iced water around, and there’s nothing I like as much as a good cold glassa iced water. These folks know what dying people need; I couldn’t be in better hands.

After a few days of lazing around in my new bed, I’m questioning whether my admission was premature. I believe I am dying, and that it will happen sooner rather than later, but my death does not seem to be as imminent as it was when I was admitted. My mornings are fatigue and naps, but by noon I’m alert and even up to a visitor or two.

Late this afternoon, we spoke with the doctor. She heard my concerns and suggested the best of both worlds, for now at least: a day pass to see how I’d function in the community. If she takes me home, J. will be responsible for caring for me, but she seems up to the task. I am not incontinent, I do not need help with self care, and, although I am weak, I can make it to the washroom and fridge on my own. J. will need to feed me and do my laundry, but she’s been doing that for some time already. If my condition declines, I’ll return to the hospice pronto.

Blogging is low priority now. J. has access to my blog, and you will know if I die. But know that the end is near and, day passes or not, I imagine I will die in this spacious room with large windows and caring staff and great food. (If only our hospitals fed us so well! Two meals with bacon so far.)

I will be writing as long as I can. If I do not respond to your comments, I trust you will understand. I am grateful for your persistence and support. You have motivated me to keep going.

How many mitzvot does it take to change a life?

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.

And then the hallucinations started….

After that long day receiving red blood cells at the cancer centre, I was pooped. I had been forewarned that my wonder drug, morphine, might cause hallucinations. I have slowly been increasing my dose, and had recently taken a booster dose upon experiencing breakthrough pain. That’s when strange things started occurring. 

First, my non-Jewish friend with Jewish baking prowess unexpectedly showed up at our door with a six-strand challah. Yes, you read that right, six strands of gorgeous challah braided to perfection. I have never seen such a gorgeous loaf, even at a Jewish celebration. This is the same friend who outdid all of us, Jewish or not, at the recent Jewish baking class, assembling those bacon-filled knishes adeptly as she did. She’d also dropped off a chocolate babka she’d made one day long ago, as if she whips together Jewish gourmet offerings all the time. I knew her history and her skills and YouTube cheater videos, yet I was sure I was hallucinating the challah.

The friend brought the challah in, removed her shoes, and settled in. I figured it was all a dream. Then, as the morphine took hold, I tried to keep myself from nodding off altogether, while another friend appeared unexpectedly with a trophy-like object in one hand, and a gorgeous rhubarb-apple pie in the other. How odd. I couldn’t recall winning the Spelling or Grammar Bee (I would have been a shoo-in had I entered) or tried out for Name that Classical Tune. I was becoming very confused.

I took a closer look at the trophy and realized that the figure was holding a stick of some kind. Was it lacrosse or hockey? All I knew was that this friend too seemed to be expected, and he too assumed a place on the couch. Then his wife, Ms. Challah Bun in the Oven, arrived to join the festivities. Everyone else seemed to know why we were gathered, except for spacey old me.

If you thought you could easily pull off a surprise on me before, imagine how oblivious I am now. With morphine, I am off to La La Land, and I won’t be back for some time. A nap would have helped, but that seemed rude in present company, if indeed present company was not a mirage.

At some point, I was informed that we were celebrating my hockey pool win, that unfathomable victory I’d secured the week prior. Judy had chosen me such an excellent roster this year that I’d left even her own team choices in the dust. I’d have jumped for joy at the victory–surprise, surprise, this Jewish lass had never received a sports trophy in her life–but injury would have ensued. I can’t even walk in a straight line right now; do you think I can lift both feet off the ground simultaneously without risking serious injury?

This morphine is a potent drug. In no time, I’ve had my greatest dreams fulfilled. There I sat Tuesday afternoon, celebrating my first ever major sports victory, as I lay dying hallucinating. No, I will not share my morphine with you. Dying people are selfish.

 

P.S. I’m so excited about tomorrow’s Blood Donor Clinics in Toronto and Calgary. Your support has been tremendous.

Pain, pain go away. Don’t come back another day.

I thought I could stop boring you with all this drivel about pain management, but I was wrong. Prepare to be bored. My pain is escalating again. Despite my slowly raising my morphine dose, what the professionals call “breakthrough pain” is becoming a problem. The pain has started interfering with my sleep. When I awoke in pain yesterday and my early-morning morphine dose did not kick in for one hour, I was mad.

Off we were headed to the cancer centre. Before I was strapped to a bed for 5 hours receiving two lovely units of red blood cells, I discussed my situation with Dr. Blood Lite. His suggestion, as I anticipated, was to bring in the big guns. He said that beyond prescribing the short-acting version of the drug, his capacity to help me with a long-term pain-management plan was limited.

Who, would you imagine, are the big guns in pain management? The palliative team, of course. Remember they call themselves the Pain and Symptom Management Team for those dying people who fear the “palliative” word. I am only making fun of those avoidant people because I am clearly one of them.

It’s one thing to know the Dying Team is assigned to my care, but another altogether to actively involve the Dying Team. I had delayed engaging the team for as long as I could. Judie, the Dying Team’s nurse assigned to care for me, is a lovely woman but her job is to deal with dying people. And thus far I’ve managed to avoid addressing my impending death.

But call Judie I did, after I arrived home with fresh red blood cells coursing through my veins. I almost asked J. to do it–she’s better equipped to get through the tough calls without crying than me–but I rediscovered my inner grown up and called Judie myself. I was the one with the problem, I can best describe my pain, so why dump the call on J.?

After all that fretting, Judie was not in yesterday. Upon hearing the word “pain”, her receptionist encouraged me to speak to the nurse covering for my nurse. “No, no, no,” I said, “I will survive another day.” I will continue to pop short-acting pills until Judie can help me with a long-term plan. I need help, Dying Team receptionist, but not urgently. Leaving her a voicemail would be fine.

Early this morning, Judie called me back. She wanted to visit today–all Dying Team members are clearly in the no-suffering camp–but J. and I had other ideas. We had planned a nice drive to the mountains, followed by dinner with friends. Judie will come by tomorrow, assess me, and we’ll go from there. In the meantime, I will start track my morphine dosing for her information.

I’ll admit I’m bummed. I’m sick of pain, and I question whether it will be under control before I die. I don’t want to spend my remaining time fiddling with my optimal dose, the one that will allow me to function without sedating me excessively. No point eliminating all my pain if all I want to do is sleep. Judie agrees. She may be on the Dying Team, but so am I, it turns out. And she’s the one best equipped to help.

There’s a reason we call them magic mushrooms

Last week, I replaced codeine with morphine in my pain-vanquishing arsenal. Dr. Blood Lite prescribed me a low dose that I could take up to four times daily. He then sent me away for a week to give it a try.

The first day, I took the drug at the prescribed dose. I can’t tell you if I had any pain because I was busy sleeping. I had 4 deep couldn’t-keep-my-eyes-open naps during the day. I couldn’t even make it through a half-hour Food Network show. My eyes kept closing, and one hour later I dragged myself back to life, until the next wave of exhaustion took over. At bedtime, I was sure I would not be able to sleep since one of those naps was in the early evening, but as soon as my head hit the pillow, I was out cold.

I realized that I would have to manage my morphine dosing so I could stay awake during the day. There’s no point eliminating my pain if I’m too busy sleeping to notice. So I tried to split my hard little pills. This was not easy. I made a mess. The little line on the back was deceptive; I ended up with chunks rather than halves, and considerable white powder was left behind on my cutting board.

So what did I do? I took one of the small halves I had created, and then, like any true addict, I refused to let the remaining pill residue go to waste. I was not going to lose one microgram of my dose. At this point, I could have retrieved a mirror and a straw, like I see addicts do on television. You may find this surprising, but my life experience does not include snorting high-potency drugs.

Instead of inhaling the drug (and I’m not suggesting I took a more civilized approach), I licked my finger, dragged it through that residue, and stuck it in my mouth. Really, I was trying to ensure the next time we cut vegetables, we didn’t get high from dinner, although I realize that washing the cutting board might have been just as or more effective to this end.

Then I told J. how much trouble I was having splitting my pills. She responded with, “You didn’t…” Yes, I did. She started laughing as she envisioned me sucking drug residue off my finger.

Need I remind you that most people do not become addicted to pain medication used to target pain? Sure, those more prone to addiction may develop an drug dependency over time, but I am addiction phobic.

I decided it would be best for all if I took the pills to the pharmacist and told her I did not want to waste my remaining days mangling my pills. The pharmacist agreed with me and assumed the task willingly.

I’m still working toward 100% pain elimination but I’m close. Turns out, some days the pain is worse than others, and I have to adjust my dosing on those days. I am so much better that I can assure you I will no longer start crying if you ask me how I am. Also, if you come for dinner, I can assure you our mushroom lasagne will not result in hallucinations.

 

Pain management for idiots like me

True confession: last week was miserable, and it needn’t have been. Anyone who asked me how I was feeling instantly regretted it, since I responded by weeping. Sorry for that, dear friends; I wasn’t coping well.

I spent the week suffering through debilitating pain unnecessarily. I know better, and you should too. I failed to follow a critical principle of pain management: catch it early and obliterate it before it consumes you. I am passing this wisdom onto you so you don’t make the same mistake I did. Don’t suffer when there’s help available.

Over the past few weeks, I have developed escalating pain in my legs. I don’t know what’s causing the pain, and I’m not sure the cause matters. If it’s a sign that I’m dying, I frankly don’t want to know. Over time, walking and standing became excruciating, and it got to the point where I couldn’t sleep or eat.

Pain is not okay. I cannot imagine the life of a chronic pain sufferer. I was trapped at home, since elevating my legs was the only thing that eased the intensity. Going out doing the simplest of errands, or even being active at home, increased my pain. I couldn’t even bake, which for me is tragic.

I had been trying to manage this pain with over-the-counter drugs, which were helpful initially, but not for long. On Saturday, after a brief walk, I arrived home in such discomfort that I reached for the codeine. Remember how I’d recently given myself permission to take the drugs I needed to manage my symptoms? Why wasn’t I doing that? Because I was an idiot.

I’ve been taking a variety of pills for years, all prescribed by my team of physicians. My granny pill cases are full to overflowing. I take what a doctor prescribes, but I’ve always been resistant to adding to that long list with over-the-counter pharmaceuticals. I had enough toxins flowing through my body on a daily basis; why would I want to add to that mess?

But pills can help. Within half an hour of taking that one dose of codeine, my pain started easing. It didn’t vanish, but it was muted significantly. Why had I waited so long for relief? What was I thinking??!!

My medical team has stressed that I need not experience pain while I am dying. I’ve been offered codeine and even morphine, yet I refused it all since any pain I had at that time was minimal and manageable. Why would I need opioids to manage pain I didn’t have? But I had a prescription for codeine just in case I changed my mind, and it’s a good thing I did. One little pill broke the cycle, and three little pills now gets me through the day.

If you see me walking down the street, I may look a little drunk. I’m wobbly and a little dopey at times. That’s codeine for you. Oh yes, and I’ve relinquished my car keys to J. Reluctantly. Before she had to wrest them out of my hands. Safety first, kids, safety first.

 

A night to remember and cherish

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.