ELDER MUSIC: Peter Paul & Mary
A TGB READER STORY: A Perspective on Time

The Busy-ness of Dying

Except for people who are caregivers to an ageing friend or relative (there are many), we don't know much about getting sick in old age and dying – at least, not in the public sphere.

It has been decades since Americans commonly lived in multi-generational households so we don't see the changes, the work, the anxiety, the worry and even the relatively minor but ongoing irritations of keeping an ailing person's body and soul together until time to leave.

In the United States, we keep most of this stuff private, unmentionable, as though it is not fit for discussion in polite company. Even in what is now, arguably, the worst period of time during our lives, the Americans really do insist on behaving like Good Time Charlies about old age and health.

And that doesn't help anything.

I could apply those thoughts to our current political/virus/POTUS situation, but I would rather be personal today. Although it has been building for awhile, I realized recently that I haven't been this busy since I worked full time.

Hardly an hour passes in each day where there is not a requirement to attend to the treatment or maintenance of my diseases. From comments over the years, I know I am not alone in these procedures so feel free to join in below.

It starts when I wake in the early morning. Sometimes it feels like I can't find the energy to go through the morning readiness ritual. I feel weak, sometimes I think my legs are shaky. They are not, but they feel that way. I work through it.

Wandering slowly into the kitchen, I start the water for coffee, count out the first three pills (two for pain before it appears, one related to breathing). Then I set up the nebulizer – 10 minutes of breathing an infusion that gets my bronchial tubes working.

That finished, coffee is ready and I settle in at the computer to check email, news, the day's to-do list. If taking out the trash and going to the mailbox are on the agenda, I remind myself do it following the 2PM nebulizer treatment – I can walk more easily for a short time then.

Sometimes there is a morning phone call with a friend, always welcome. I drink coffee, think about breakfast and sort out the pills related to food and digestion that need to accompany meals.

Sometimes now, I lie down for half an hour after breakfast, using supplemental oxygen while I rest. By then, it is almost 10AM and time for the next nebulizer treatment.

One morning a week, my hospice nurse comes by to consult with how I'm doing, offer suggestions, order medications and generally have a nice visit. Every two weeks, the social worker comes by one morning.

By then I am alert and active enough to think about writing the next blog post. Or, at least, make some notes for it.

Whatever I'm doing at the desk, in the kitchen, with the paraphernalia of my disease maintenance or household chores, I am careful to keep a tidy area around it all because it takes so long and so much of my reduced energy to clean up if I let it go beyond what mess I can make in about 10 minutes.

Sometime in the morning, I check my supplies of medications to see what is getting low. Hospice supplies them now but I need to track my needs for them.

After the 10AM infusion, I'm ready for some serious blog work or household accounting or some other boring but necessary chores of life. As the time ticks by, I'm keeping an eye on the clock for my noon pain pills followed by lunch.

Eating now has its own complications in terms of appetite and, sometimes, pain. If I get off schedule, I'll not eat at all and after a lifetime of fighting the same excess 10 or 15 pounds, I am now in more danger of too much weight loss. I don't think my thighs have been this small since I was 12.

From somewhere around noon until 4PM is my golden time. I mostly feel good, am pain-free, can feel a decent amount of energy flowing and can get a lot of writing or any other kind of non-physical work done. It's also when I take out trash and check the mail – my short walk of the day.

From then on, I'm slow. I might take a nap. Mostly, I lose track of time during these couple of hours. I might walk back to bedroom and then see that 20 minutes have passed when all I did was pick up a book I left there. I never have any idea what happens to that much time.

Six o'clock brings dinner, more pain and other pills, another nebulizer treatment and I am finished for the day.

It strikes me that this is an incredibly boring inventory of one sick-old-woman's daily life - yet there is plenty I have omitted. There is hardly any time left for me to just be.

One of the larger considerations in recent weeks as the daily chores have increased, is wondering when I make time to consider those end-of-life drugs sitting in a cupboard across the room.

When what seems now so long ago that I decided to take that route to my death, I don't believe I understood how difficult it would be to choose the time – I thought I would just know.

Of course, I wasn't nearly as weak and sick then as I am now. I hadn't even considered that I could feel fatigue so deeply as I do sometimes.

Nevertheless, it is the route I have chosen. There is not an option, like my mother had, to just stay in bed until I expire. There is no me to take care of me in that circumstance as I did for her.

All the medical professionals I have talked with about this, all of whom have been present at patients' use of the drugs, tell me they believe each one chose the right time. For several months I have trusted them in this. Right now, today, I am not so sure I will do that well.

Meanwhile, I am so damned busy.

Comments

Good morning Ronni.

I've been pondering on those little moments here and there that seem to just disappear into the ether. Wouldn't it be nice if they went into a time bank and could be used to call up experiences once again of the best moments of our lives - joy, rapture, passion . . . what ever their source may be, one last time before going over to the other side. For me, one would be walking in the warm waters of Padre Island on a bright sunny November day with a warm salty breeze and feeling as completely one with the universe as I can ever recall. Time bank or no time bank, I'm hoping that same one-with-the-universe feeling is what we experience as we make that transition.

You certainly have a full schedule caring for yourself and your predicament, Ronni, and are fortunate that you/we now can access teams of caregivers from outside of our families.

Matrilineally, in our family, my grandmother cared for her mother who had previously cared for her mother. (My great-great-great grandmother had died prior to my birth, so I don't know how she fared. One brother cared for his wife for the last year, until her last month. At that time, our mother flew out to help care for my SIL. Otherwise, our family members have been fortunate enough that they have not had a lingering illness/incapacity. Oops! I failed to recall that my mother cared for my father for the last few weeks of his life. He could not have had a better caregiver.

Stay busy, I love your notes, and wishing you the strength to go on, until maybe you don't need to make the decision, didn't we used to say we'd like to die at home, in our sleep, it makes sense. Have you tied up all loose ends, written to us in your blog things like todays messages, and not have to worry over those meds. A Good Death experience.
Sending love to all this Monday morning..........

Your talent for expression is such a gift. Thank you for putting your experience into words for those of us who cannot.

As a caregiver for my husband, I know how difficult it would be. It is impossible for him to care for himself. I do most of it and our children pick up the slack. I don't know what I'd do without them, and I know (or think I know) you couldn't do it for yourself. I feel for you, Ronni. I hope the decision will become easy, at some point; but don't let yourself suffer too long. We will miss you, but we don't want you to suffer.

I didn't realize the amount of time consuming, mind consuming self care you need to do each day, it's really a mountain! Wish you had a care elf to hand you the right thing at the right moment, including your coffee. Totally understand how you could lose faith that you'll know the right moment to move on, but I really believe you will. Have seen many animals come to that moment, and, as we're learning, (the ancient spiritual masters, and many indigenous people have known forever, but not us) we too are animal/plant/mineral. Thanks, again, for your honesty..............it's helping, and will help a lot of others.

Last year, I spent time with old friends while the husband was setting the date to take his final prescription. He rescheduled a couple of times, and then settled on October 1. When the time came, he was more than ready, saying "I think I overshot the runway!" as he thought perhaps it might have been better to do it a bit sooner. The last few days had not brought anything worthwhile for him or his family. I do think you will reach a point where the decision will not be difficult. When the time comes, go in peace, knowing you have made such a difference in the life of others. In the meantime, keep on doing what you're doing and keep us posted!

Dear Ronni,

I absolutely do believe you will know when it is time. Since you don't know yet, it's not time. Also I think busyness and that choice are on opposite ends of a spectrum. When you no longer have the strength or the will to continue to do your days as you are now doing them, then that seems like it will be a decision point. I just don't think you should make the decision before 2 in the afternoon!

As always, I am sending you love, clarity, patience, and joy. And my gratitude.

Thank you so much for taking some of your day to share a story with me that I am so greatful to hear.

I too think you will know the right time. With love and gratitude to you.

Thank you so much for writing all thise out when you're tired. I do appreciate your effort. I'll save this blog post.

I can only suppose (and maybe I missed a post about this) that you prefer to be at home, rather than in a hospice. I understand the comforts of home, the benefits. However it is a lot to do for ones' self. How honoured we are that your writing is a priority.

I see my gerontologist every three months and my vital numbers have remained fairly constant. Not 100%, but within an acceptable range. However, this year, the year I turned 75, my usually steady stats have become a bit wobbly. The BP is up, my kidneys aren't doing that well and I'm retaining water like a reservoir. For the first time in my life I feel I'm heading downhill. Fortunately, my heart and lungs work well so I don't anticipate the end will be sudden or unexpected. But, who knows? I, like you, would like to go when I'm ready and I hope when that time comes, the state I live in will allow me to do that.

Thank you so much for making writing your blog a priority; reading it is a priority for me.

You mention your meals in passing. Are you cooking for yourself, or using frozen meals, or having them delivered? Good nutrition and delicious treats would be so important, I think. If you have already covered this in your blog, I apologize for missing it.

The blog is important. We all read it. In my case, first thing in the morning (I'm in Bremerton). I take all my pills in the morning and before bed. I notice more changes, not good, since I turned 72. Time is running, not out yet. As I tell my listeners, I have anywhere from 20 mins. to 20 years. Oh well. Life was fun and I locked in many good memories. Declining health and maintaining your blog, Ronnie, is commendable. I guess it is well that you have done writing for so long, it may make these final months easier. I now know why we all retired, some sooner that later. We need time for all these stupid pills and the doctor appointments! B

ANYTHING but "boring". Thank you for sharing a glimpse of your reality these days. And no mention of bathroom issues but there are almost always bathroom issues. It's not just the physical but also intellectual and emotional time it all takes up.
What's amazing to me is that you still care enough to share and give us a show and tell that will be one of those gifts that keeps on giving.
Thank you, dearest Ronni. Like everyone else here, I will keep on wishing for golden moments for you in each day.

It seems to me that you are not close to ready. You get enjoyment from a bunch of things....this blog, talking on the phone to your NY friends (there is nothing like NY friends). I too lived 65 years in NY....now in Vermont...I can’t find people to laugh with. Maybe when you can’t get the mail anymore you will start to think about the end of the last chapter. But now.....you are more alive than some that are not even sick. I too, feel certain you will know. You are very self sufficient...I believe you will be for quite awhile.

You are a WONDERFUL woman
o/

Thank you for these posts. I have been a reader since your NY days and consider you a friend altho I rarely post. I appreciate your great research on many topics over the years and even now as you give us so much to think about. Peace to you my amazing friend.

I, too, wonder where my days go. I can tell you about my "bad" days, when there is pain and weariness and I wallow and self-pity a bit. My "good" days, when the CBD and Tylenols alleviate the pain to the point of my walking to my car in one stretch feels like I'm in an alternate universe. I can visit a cafe and sit down like a real person. And smile. They are becoming rarer.

I do find the time to "be" on my good days and think myself to more positivity. I try not to be morbid, but death seems closer now. I cherish the moments I feel are not coming again. A good way to live for anyone.

The Covid has darkened everyone's outlook.

With you in spirit.

XO
WWW

Fortunate are those who have family or friends living nearby and able to provide assistance as might be needed. Anticipating this sort of help if needed would not be available to me, so my considerations of the pros and cons for choosing to live in place in my home included that scenario. The last time I had been ill when single and living alone was when i was in my twenties. The next time decades later after my husband’s death I remember well my feelings and thoughts when i became quite ill for a few days in bed at home, barely able to get to the bathroom but not the kitchen one day.

I keep reminding myself and reassuring my children who live across the country from me this is a grand experiment from which I learn when unexpected circumstances arise with which I must cope. I don't want to move back to snow country though they invite me to do so. Since Covid-19 I’ve also told my children should I become ill they are not to fly out here — I’ll pull through or I won’t, but I don't wat to jeopardize their family health. Whatever happens to me, will happen and I’ll do the best I can to care for myself in the meantime.

Recent years, at an age younger than I expected, I’ve had increased occasions when I’ve been challenged to stay at home, avoiding the ER. I’ve had to adapt using telemed on a couple occasions, also using home health services once for a period of time. Too many chores are not getting done but the woman who came to help but only one time decided she was going to cease working in people’s home when the area virus spread worsened.

I’ve been forced to realistically recognize and accept my limitations, reassess what is really important for my own peace of mind instead of fretting over what I can’t do. Getting adequate sleep, even with an occasional daytime nap if necessary, is a top priority. Eating adequately, drinking lots of water, and keeping bodily functions regular is vital. I note many tasks takes so much longer than they use to and some just have to be postponed and even eliminated.

I’m not facing a medical diagnosis or respiratory problem as you are, Ronni, but I do identify with decreased endurance and have had to face pain, mobility limitations. Meal preparation is not a pleasure so I’ve welcomed microwavable fresh and frozen meals, soups. Items for ordering on the internet for delivery, pickup are a boon. I guess I’m fortunate these services are all available at this time in my mid-eighth decade.

I wish you continued satisfaction in what you can do, guilt-free acceptance of what you can’t, adequate sleep, pain free days and nights, the joy of friends interactions, and the delight of doing what gives you pleasure even if it consists of doing nothing for a time.

My dad was diagnosed in August and gone in February. Had no option of surgery due to heart and lung problem. I took care of him and Hospice was involved too weekly. Only morphine and oxy helped. I wish when I would make him coffee or give him meds he too would have had pain free moments. His last words were I love you Lindy...so I feel I did right by him.

Late as usual so why repeat the eloquent and relevant comments already submitted by TGB readers?! Am I lazy at times? Of course!

Oh Ronni, you made me want to cry with this sentence. “ There is no me to take care of me”
I can’t explain why that hit me so hard.
I can just imagine how you must feel even with the hospice care you are receiving, you still need the reassuring presence and comfort you provided for your Mother..
(((Hugs)))

Thank you for the time you set aside everyday to give strength, knowledge and comfort to others through your writing. It is most appreciated. From me to you, love.


Ronni, when your “golden time” ceases to be so, that will probably be the clue you are looking for. Even if you know it’s your time to go it doesn’t mean you won’t have moments of sadness at the thought of leaving it all behind. It sounds as though you have had a good life, and that is no small thing to say goodbye to.

Thank you for your raw honesty about the realities of eldership and hospice placement. How wonderful is the hospice care since most of us no longer live in multigenerational settings.

I greatly appreciate your frankness and realize that this is a possible future for many of us. I do believe that we have insight about the "right moment" for key times in our life and have every confidence that you also will KNOW when that time is right.

All I can do, really, is agree with what others have so eloquently said. There is so much wisdom in these posts and the comments of this tribe here. Thank you, again. I learn so much!

Roberta's comment: "When the time comes, go in peace, knowing you have made such a difference in the life of others." I hope that knowing that you've helped so many of us brings you satisfaction, for it is so true. It remains amazing to me that you are still sharing so much of yourself and your experiences with us. Immense gratitude.

Ronni - your writing has drawn me into your lived experience the same way I might slip into my favorite pair of slippers. Always a period of novelty and adjustment, leading to a period of increased familiarity and comfort, but as with all well-loved things, the hard truth that this favorite piece of my life has its limitations. We don't know when, thankfully, and so we push ahead with hope. Life is sweet, even in suffering. Slippers analogy aside, I visualize you taking a victory lap with your blog, as your adoring readers heartily cheer you on just a little farther!

My only experience with Medical Assistance In Dying is with a dog. It is totally acceptable to choose the time of death for a pet, but actually choosing the right time is hard. I know people who say it was a very clear choice at the time, but my experience is otherwise and I still hold a bit of guilt for choosing the "wrong" time. For some, choosing the right time for MAID will be easy, but for others, not so much. I hope it will be easy for you.

Cathy J. talks about a Time Bank. It is within the realm of possibility to have one: a journal, or diary. I've been writing journals since I was 21, and I was amazed when I started reading them last year. There were many things in my life I could recall again! I could relive so many experiences, the birth of my three children, carefully registered on the diary; I "heard" my babies talk (I used to transcribe their conversations when they were stil toddlers), I felt again the thrill of new countries, new smells, new cultures, new food!! new people. My graduation party from law school, my first case in court, my children's graduation days!
It has been a thrilling experience, I'm so fortunate I had those experiences and reading them first hand makes life worth living again. I'm 74 years old.

"There is hardly any time left for me to just be."

That's what we miss when we're still working, too!

Once again you've nailed it, and once again you're breaking trail for us, Ronni. I had never really thought about how, in a day of serious illness, there could still be a window of time fit to think and write and communicate in—the things I too have lived for—if the body's needs were cared for methodically, matter-of-factly, and compassionately.

Just a guess, but I bet they're right that you'll know when it's time, and the fact that you think it will be hard to know means it's not time yet.

Thank you Patty-in-New-York and Roberta for saying what's in my heart:

Roberta's comment: "When the time comes, go in peace, knowing you have made such a difference in the life of others." I hope that knowing that you've helped so many of us brings you satisfaction, for it is so true. It remains amazing to me that you are still sharing so much of yourself and your experiences with us. Immense gratitude.

I can't imagine how you or anyone makes the decision that "it's time". Is there always one more thing to read, one more event to watch ( like the election and subsequent actions), one more article to write, one more person to talk to, one more sunset, one more starry night, one more birdsong to hear, one more task to do or just one more hour to hold on to? Or does the next thing become so unimportant that saying goodbye is easy? I wonder. And I wish that once you are gone, you could come back and tell me.

When I became ill at age 37, and left to figure out how to recover pretty much on my own, I found myself saying often, "This is a full time job!" Ronni, your words came to me with such resonance. Often the work is doctor's appointments, blood tests, and such, but what you describe of daily "stuff" to keep oneself going is so spot on. I have been granted the grace to live far beyond what was expected, but life is lived at turtle speed around here, and cooking is done with minimum fuss and lots of "get it on the stove to simmer and come back to check later." Thanks for articulating so clearly what life in the slow and slowing down lane really is, even as we are still able to find joy in small things like a call from a friend. Blessings and prayers as you invite us along this difficult road. It is a privilege. HUgs.

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