October 28, 2022
Dear Ken --- I am pasting in below a letter I recently wrote to an Arizona friend …
“I’m wearing my beloved grandmother’s wedding ring now … I called/call her Mammy, my true mother …. because I’m begging her for help. I have some things to tell you. Since about the first part of August, my physical body has gone downhill really quick. Just almost overnight. First, I couldn’t lift my leg to get in the tub/shower. Was puzzled … why can’t I lift my legs? … and from there things just got worse. Then I couldn’t get into bed, couldn’t get in the car, legs just not working.
To back up a little and probably tell you things I’ve already told you … I was born with lipedema
which morphs into lymphedema
as age progresses, causing varicose veins
, ruined knees, major swelling, etc. (Such fun.) I also was born with scoliosis
, and other back problems then came along for the ride, one of which is spinal stenosis
. Now that’s a real fun one … prevents walking, a biggie. Other major things happen as you get older because spinal nerves are being impacted.
Truth is, I’ve lived way too long. I really thought I would be outta here before those nerves got into a tangle. Never thought I’d live to almost 90. Now I’ve got to deal with it. There’s more …I can’t breathe … was just diagnosed with pulmonary fibrosis
and pulmonary hypertension
. Oh, and that’s not all … add congestive heart failure
to that, and even more attacks from lymphedema on now my whole body, torso, arms, more on already deformed legs, and, oh my tummy looks like I’m overdue pregnant with quads. All of this swelling makes the skin very tight and painful.
This body is worn out …I hurt almost everywhere … and, frankly I don’t want to be saved and will NOT go to a hospital. I always wondered what would take me out, and now I guess I know, but it’s so many I don’t know which one will do the deed! Was hoping for a quick heart attack … or slipping away in my sleep somehow.
That said, I’m ready to go and am begging my beloved grandmother, my Mammy, to please come and get me. That probably won’t work, so don’t get out your crying handkerchief just yet. If I’d been smart, I would have somehow gotten something long ago to take to stash away until I wanted it, but just couldn’t imagine living this long.
My strong determination to hang around until the pandemic was over and until Brenda has a somewhat normal life again has wilted. The desire to not leave her here by herself in this house with no one but Bootsie ... her dog … has kept me motivated to stay. (I had 2 years of almost complete isolation while living in K., and nearly went nuts and don’t want her to experience that.)
But I have now wimped out. And what lies ahead is not easy to think about. I don’t want to put Brenda through my care-taking which is going to be intense if I keep on living forever and ever. Already she’s remodeled the bathroom for me, and I probably won’t be around long to use it that much … I hope. Have I told you that Brenda is an angel?
Just thought you might want to know all of this but there’s no need to fret … unfortunately, I’ll probably live long enough to spend lots of time regretting even more my multitudes of mistakes and errors throughout this too-long lifetime! ---
PS … My grandmother’s wedding ring is a gold buckle ring, Victorian/Edwardian style … they married in 1909. One time she lost it in the garden and found it a year later … in the garden! I love wearing it, and hope that it calls her to me … soon.”
So, here I am, Ken, telling you that I’m on hospice
now and so grateful for their assistance and care. Hospice now doesn’t mean what it used to mean. Mostly it’s about comfort, right to the end. And the end can’t come soon enough ... As you probably remember, I’m ready, just so ready, to leave this worn-out body.
Since I wrote that pasted letter (above) to my Arizona friend, things have gone downhill even more. Am now on oxygen, 24/7, and breathing is a real problem, even with oxygen. Sometimes I’d like to cry, but it takes too much breath to cry!
My legs have gone numb up to my hips, although I can still walk with a walker … more like hobbling … but can’t even begin to get in bed by myself … Brenda has to lift my legs into bed. So embarrassing.
The hospice team checks on me and are guided by my doctor. Hospice provides most of whatever I need for comfort. Yes, morphine
. And I take it gladly. I’m now a druggie … would you believe?!?!! ☺ There’ll be no hospital, no “saving.” All of my paperwork is in order, right down to ordering my urn from Amazon!!
Thankfully both of my children are supportive and totally understand that I’m ready to leave, and they don’t want to see me suffer. We’ve had talks about it, and even some laughter, and I am so fortunate to have them. My son lives far away, so I don’t see him daily like I do Brenda … who is stuck with me and has been wonderful.
Ken, I do have a great fear, though, and that is that I just keep on living, going more downhill every day … oh, gosh, I’ve just got to get outta here, so if you have any “pull” with anyone in the “wherever” … please use it to help me leave!!!! I’m so disappointed every morning when I wake up and I’m still here.
From reading your most recent blog, I am so pleased to see that you are handling this old age thing with cheerfulness and nary a drop of sadness and that you still enjoy the small niceties of life. That makes me happy. No one should have to deal with the roughness of my end-of-life
time. So, please keep writing those blogs … we old ones … those of us who are still tottering around on this woeful planet … need your cheer!
Maybe I’ll beat you to that “wherever” place? If so, let’s have a nice chit-chat when you arrive. However, it’s been so long since I’ve heard from you … maybe you are already there? (And wrote your blog ahead of time?)
Because he doesn’t want to say the words “goodbye”, my son came up with this goodbye line for whenever he visits and leaves to go home … so I’ll use it here ….
See you next time! … Love, Bonnie ♥
And, ha ha, if you answer this, I’ll probably still be here ... unfortunately … and you’ll get a reply if I am!
October 29, 2022
Oh, gosh, Bonnie — what dreadful news!
Actually, before hearing from you, I had been planning to write to you, not just to find out how you were doing, but also to ask you for your advice since I’ve been having increased difficulty in walking and exercising lately. My legs feel like dead weight now. But when I read your lachrymose letter, I forgot all about my own problems.
Your situation and physical state sound so wretched, I want to weep. Nobody should have to bear this kind of torture. Old age is not just cruel; it is an obscenity.
At least you’re now under hospice care, and that's clearly is helping you some, but only death will cure you. Maybe you could ask one of your hospice volunteers if they could score some Fentanyl
for you or something else to take you out. Or jack up your morphine. Otherwise, you just have to pray that your Mammy will come to your aid soon. If you begin to see her or other deceased relatives, it will be a sign that they are waiting to welcome you home. I pray that it will be soon. Your letter was almost unbearable to read, but it is obviously incalculably worse to be experiencing all the hardships with your body that have no cure but surcease.
At least you are blessed to have Brenda there, but I know this must be hard on her, too, and I know how much you didn’t want to leave her before the pandemic subsided. But you are subsiding first and you need to go. I will pray for your release, Bonnie. I wish I had some connections with the boys upstairs, but I will do what I can to help you get home before too much more time passes.
Once you do, I will probably be along before too much more time passes. Save a seat for me.
In the meantime, Bonnie, which I hope won’t be long, do you want to stay in touch, even briefly? If so, I will hold your hand, at least virtually, until you go. I will always reply as soon as I can, so please write when you can, if it helps you in any way. For now, you have all my love, dear Bonnie, and my prayers that you will soon be spared further suffering. A much better, brighter and loving world awaits you.
Love and courage
October 30, 2022
Thank you for your lovely compassionate letter … it brightened my spirit, such as it is. And, yes, am still here. You’re absolutely right … old age is an obscenity.
First, as to your question about your legs feeling like dead weight now, I regret to have to tell you that this is normal for spinal stenosis. The spinal nerves get all tangled up in old age (!) and the legs are affected. In my case, it got worse almost overnight. Hopefully, yours will follow the normal progression of most cases … slow progression with the possibility of slowing it down with physical therapy.
But it’s too late for me. You do have some choices, though, and perhaps you need to decide if you’re going to try options … which could be painful … or say “to heck with it” and just let it do what it must. For me, I decided that I’d let it progress because I’d already had too many failed surgeries and other treatments including some of the newer alternative things.
Was hoping that I’d die before it got too bad … and so here I am. Didn’t die. And it’s bad.
It may not turn this bad for you, Ken, because you don’t have the genetic conditions that I have and that are just piling on, making it worse.
Sadly, the hospice folks and/or Brenda would get in major trouble if they over-dosed me. We do have the morphine here, and Brenda keeps records when she gives it to me. Am sure it’s not worth jail-time to put me out of misery. We’re much kinder to our beloved pets, aren’t we?
I’ve not “seen” Mammy or anyone that could help me, and, believe me, I’M LOOKING. My massage therapist, who is also a death doula
, has been visiting me … just for talk and comfort, and that has been a good thing … although I get very tired. Am exhausted most of the time … just walking to my room wears me out.
To answer your query, yes, please, let’s keep in touch and please hold my virtual hand … and so much gratitude for doing what you can to get me outta here!
(Will save you a seat!)
October 30, 2022
Before turning to you, I am sorry to tell you that I’ve had just a wretched day myself. Not so much with my spinal stenosis, but for days I’ve had bad shits and today was even worse with diarrhea, too. I’ve had this problem, on and off, for about two months, and it is really wearying and worrisome. I will have to try to get some medical help with it ASAP. So I’m not at my best tonight, alas, but still much better off than you are, dear Bonnie.
I know that Brenda can’t really give you enough morphine to take you out without risking her own situation. I just wish the hospice people could do it. In some of the blogs I’ve written about the Right to Die Movement
, I’ve read of a t-shirt that says, “I want to die like a dog.” Indeed, we treat our pets compassionately with there’s no hope for them and when they are only suffering. Why we don’t do this for human beings is a disgrace and is itself an obscenity. I just hate the thought of your having to drag yourself through your days waiting for the days to end. I just hope that you don’t have many more days to wait, dear Bonnie.
Thanks for trying help me with my spinal stenosis, but PT hasn’t helped me. Today, despite how lousy I felt, I was able, with difficulty, to walk partway down my block and back, but then could do 20 minutes on my bike, which surprised me. But I haven’t been able to do that every day. Some days, I just can’t do squat. I also find that I run out of breath doing routing household chores.
But I don’t want to wimpier about my own situation when yours is so desperate. Where is your Mamma when you need her? I hope she’s waiting in the wings for her cue.
But mindful of your request, I banged out a blog this morning before I started to feel too bad. I expect it will be posted later this week, perhaps on Thursday. I actually hope you won’t still be here to read it.
Don’t worry about me, Bonnie. Even when I am having my own troubles, I’ll still be here to hold your hand, virtually, and otherwise keep you company until you are released from your body’s bondage. I will continue to pray for you, too.
November 1, 2022
Dear Ken --- I do hope that you’re feeling better by today? The ****** are not fun, and take the zip out of life, such as it is. (Morphine can mess you up, too, but the opposite.) That T-shirt you told me about is great … I totally agree!
This is a quick note (maybe) because I think I’m just going to crawl back into bed in a little bit. Not breathing properly makes me feel so weak and there’s a “I don’t know what to do with myself” kind of thing.
Have read most of the disgusting news on my computer just now. Have stopped watching TV because it’s so difficult to get this numb body into my recliner, or in any other chair or couch. Haven’t even watched the last episode of “Good Fight
” or the late night guys lately, but it doesn’t seem to matter anymore, although I could watch on my desktop.
And what use is it to read what passes for news these days? I guess I still have a need to know what’s going on in the world, even though it only makes me sad.
What makes me even sadder is that Brenda and I have a habit of watching TV together after supper, and now she’s in the den by herself and I’m in what we call the computer room, by myself. I know she’ll have to get used to it sooner or later. But …..
So bed will be my option for today, right now. That’s about the only decision I can deal with at present! Just had a half dose of morphine. It would be nice if I don’t wake up ….
I hope that something can be done medically for you, Ken, so that you can somewhat enjoy your life and continue to write for us all. Looking forward to your blog on Thursday if I’m still around. Am definitely impressed that you can still do some great pedaling on your exercise bike at times!
Thank you for being with me through this … it means a lot to me, and I know that you understand totally, at depth. --- Love, Bonnie ♥
November 1, 2022
I stopped what I was doing — reading a book manuscript online (which I hate to do) by an old friend with whom I recently reconnected. It’s about a swami
my friend met and studied with during the 1970s who used music as a tool to engender enlightenment. I’ve only read the first few chapters, but it’s no problem to lay it aside for you, dear friend.
Yes, we live in dark times these days. Even the swami commented that this is the time in the Yoga
tradition known as the Kali Yuga
— basically, the spiritual pits, an age of endarkenment. You’ll be leaving it all behind soon. Where you’ll be going there is no darkness. I remember an NDEr telling me that — “There was no night there,“ he said.
But I can see that you are bored and dismayed at the state of the world, and feel even worse about the state of your body. Nothing to do but wait, just marking time until you leave time and enter eternity. Meanwhile, at least there’s morphine to get you through the day. I hope you can rest soon and find some measure of at least temporary oblivion.
It’s sad, though, to read that you and Brenda can no longer watch TV together, and that you find yourself isolated more than you would like. I wonder if she could read to you, however, just to do something together and have something to distract you.
As for me, I didn’t have a great night’s sleep last night, but at least it was better than the previous night. I’m still waiting to shit. I did have to see my dermatologist this morning and got the full freeze-dry treatment of my face. Not the most fun I’ve ever had. But, all in all, it’s been about as good a day as I have had lately. I’m grateful.
Maybe you’re sleeping now. Why don’t you write me tomorrow, if you feel up to it. There’s an old Beatles
’ song that I’m sure you know that begins, “I want to hold your hand
….” I want to hold your hand, Bonnie, and not let it go until you’re free. I love you.
November 4, 2022
Dear Ken --- Yes, still here, regrettably … thanks for checkin’ on me. This will be short … am wearing a rubber glove on my hand in order to type without drowning the keyboard, so there may be some typos floating around. Explanation --- my massage therapist came here this afternoon … she is also a death doula and has been visiting me lately … because, well, you know … that death thing that is on the horizon.
Today she massaged my swollen, lymphatic legs … very lightly, legs only. After she left, I started dripping lymph
from all over!! Like turning on a hose. It drips from my fingertips and my legs, arms … everywhere. My son’s wife who is an NP … told us that’s sometimes a sign of the body shutting down. Rejoice, Ken! Maybe I’m going to beat you “There!”
What’s going on with you … hope you had a good day, sat in the sunshine (if there was sun there) and enjoyed a good book or music? Yes, we can definitely compare our many woes, can’t we? I might have you beat on the lymph dripping though! ☺
Heading for shower now … so as to mix water with lymph fluid, I guess. And hope it stops before time to get in bed. I may have to sleep somehow without my bed. ☺
November 5, 2022
OMG, all that lymph fluid! You’re leaking, gal, but, as you say, maybe despite the mess and discomfort, it may signify that you are starting to head toward the exit, which I know at this point would be a relief. But how are you doing and feeling today, Bonnie? You’re welcome to send me an update later if you have time or tomorrow.
Since my focus is on you, I don’t want to natter too much about my own troubles, which of course pale into utter insignificance compared to what you’re dealing with. Let it suffice just to say I’m tired today and still have my messy shits to deal with. Small beer in the scheme of things when you are having so much to cope with. I’m just so sorry that you never seem to have any relief from the woes of your body, Bonnie.
For now, I just hope that you’ve been able to stem the lymphatic fluid flow and aren’t in too much discomfort today. Anyway, please give me an update when you feel up to it. All my love to you, dear Bonnie.
November 6, 2022
Dear Ken … yes, maybe starting toward the end … very uncomfortable … heading back to bed now …. Even though my son is on the way here …. He'll just have to wake me up. This is probably not goodbye, Ken, see ya tomorrow … you get a good sleep and feel better! Love always and deep appreciation. Love, Bonnie. Hold my hand. ♥♥♥
November 7, 2022
Are you still hanging on, Bonnie? Thinking of you, still holding your hand. Love, Ken
November 9, 2022
This is Brenda, Bonnie’s daughter. Bonnie peacefully crossed over from her earthly dimension yesterday around 5:00 pm. She enjoyed your friendship, correspondence, and support very much. I want to tell you that I found your messages to mom very touching ... that you were holding her hand. I know she felt that even though it was long distance. May your end journey be as smooth as possible and just know that mom will be holding your hand from the other side. I am sure you and mom will connect on the other side someday!