whadda yah think?

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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ROBO Pop
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whadda yah think?

Post by ROBO Pop » May 24th, 2019, 12:09 pm

Not to be melodramatic or anything, I, and my lovely bride sense my time is winding down at an ever accelerating rate. And perhaps Chrissie's recent departure highlights these thoughts for me.

As I recognize time is running short I find myself asking questions about what to expect and how to deal. Sure I've thought a lot about this but as change happens new questions arise. In researching, while I'm finding some decent information I recognize there is very little first person feedback on this topic.

Not to be morbid, I've been contemplating doing a thread on what I'm experiencing and going through as I progress, to share with my friends here. I can't promise much as I struggle daily and may not be able to follow through, but I would do my best to share what it truly feels like and perhaps help others who follow.

I like and respect this motley bunch of misfits and would appreciate any thoughts?

Robo
Broken Heart
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mykidsmom
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Re: whadda yah think?

Post by mykidsmom » May 24th, 2019, 12:52 pm

my da used say....you come into the world alone...you go out of the world alone.........so this dying process is really something thats yours...yours alone...so yes...if you want to set up a thread...as far as im concerned go for it....I would do it if it was me...I have questions....and issues i cant and dont think i ever could talk openly and honestly with among my family........chrissie did it......so did bob....and robo this is about you....and even putting thoughts down is good for the soul....

Now i dont even want to think of a time your not here.....you could have at least got the decency to wait till im gone....i always thought id be gone before chrissie to be honest....and i feel sorta that death...like mental health issues is a huge taboo subject and to be avoided at all costs...it shouldnt be......hugs.
I think.....Therefore I am.!!!!!

Grammaram
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Re: whadda yah think?

Post by Grammaram » May 24th, 2019, 3:20 pm

I have spent final hours with several loved ones, and have shared my experiences with many others, although the topic can be difficult for some. I’m sure the perspective from the outside (watching) is far different from that of the one experiencing it. It is something we don’t often hear, but I think it is something worth sharing. Ultimately, we all have our own unique experience passing.
I would add this, though. In my experience working with the dying, I had to stop seeing a “dying” body of a loved one, and focus more on the “living” spirit of the person I knew and loved. Along with the grief, their was the joy of a wonderful life lived (and in my belief system, continues on.) Perhaps you could share some of your wonderful memories of your life along with the hardships you bear. Wishing you peace dancehearts

Margaret wavhi
Congenital Heart Disease - Tetralogy of Fallot - repaired Sept. 1966
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mrag
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Re: whadda yah think?

Post by mrag » May 24th, 2019, 7:36 pm

Sounds like an excellent idea and you are a good writer for the most part. Still confused about your topics. Will you be including recent conversations with Chrissy and Bob? Was there anything Bob posted during his transition that would give you a headstart? Do you have a subject title yet so we can find the topic once you get going?
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

Stella Blue
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Re: whadda yah think?

Post by Stella Blue » May 25th, 2019, 1:51 am

The idea makes me incredibly sad, but it is a good one. Freckles and Chrissie were both very open and honest about their feelings and experiences, and I am sure I will draw upon what I learned from them when my own time comes (assuming I have advance warning, of course). Your situation is more difficult in a sense, as your issues are all heart issues and I always have to fight back the impulse to wish that you had decided to go the transplant route. In any event, I hope you are with us for a long, long time.

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ROBO Pop
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Re: whadda yah think?

Post by ROBO Pop » May 25th, 2019, 2:47 pm

mrag wrote:
May 24th, 2019, 7:36 pm
Sounds like an excellent idea and you are a good writer for the most part. Still confused about your topics. Will you be including recent conversations with Chrissy and Bob? Was there anything Bob posted during his transition that would give you a headstart? Do you have a subject title yet so we can find the topic once you get going?
Funny, I pushed and encouraged Bob to post his EOL experience to help others and hopefully himself on the final journey, but I haven't decided whether to do this myself.

Of course I would talk about my emotional component but think most focus should be on symptoms and signs. What to expect, what to do. For example the difference between sob and SOB, believe me it ain't the same. I will share my only real concern/question - is the end really approaching soon or is this much ado about nothing.

Waffeling between calling it "In the end" and "tears in Heaven"

Stella, I have never regretted the path I chose. I am just thankful I was able to choose.
Broken Heart
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Re: whadda yah think?

Post by InSync » May 25th, 2019, 6:31 pm

Maybe you could call it Highway to...….nono I mean Stairway to …..

Seriously, though, I thought about this a lot since we lost Chrissie. The two aspects I'm most stuck on are:

Why didn't I realize how sick Chrissie was? I knew she had health challenges that weren't going to get better, but how could I not realize how close she was to the end? She just didn't seem that sick. I'm not sure how you seem sick online, but that has troubled me.

The second thing that gives me heartburn is ......I hope Bob's family doesn't check in here.....I felt like Bob was impatient for it all to be over. He really seemed to get weary, and maybe even a little angry, that it was taking so long. Maybe that was just my perception.


My only real experience with watching the process is with my mom who died of cancer. She got progressively (non political intent) weaker, and lost functions like sight, the ability to walk, etc. but that was over a period of months. I know everyone has a different experience, but I was unprepared for Chrissie and a little perplexed by Bob.

Good discussion, for sure, Robo. But don't feel you owe us that intimate look at your life.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12

St. Jude CRT-D 7/19
The beat goes on.....

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ROBO Pop
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Re: whadda yah think?

Post by ROBO Pop » May 25th, 2019, 9:15 pm

InSync wrote:
May 25th, 2019, 6:31 pm
Why didn't I realize how sick Chrissie was? I knew she had health challenges that weren't going to get better, but how could I not realize how close she was to the end? She just didn't seem that sick. I'm not sure how you seem sick online, but that has troubled me.

...I felt like Bob was impatient for it all to be over. He really seemed to get weary, and maybe even a little angry, that it was taking so long. Maybe that was just my perception.
Even actively participating it's sometimes difficult to gauge where we arevin the journey. Chrissy was very sick for a long time and miraculously bounced back time after time so it hit all of us hard. But remembrr she fought hard and had a good run, now she can rest in peace.

I'm where Bob was so I can relate. You said it well, we get weary and just want it to be over. I understand how people choose to end it, it's hard to keep going. I don't believe in suicide because of the impact on family and loved ones, but as things progress I understand it more
Broken Heart
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Leedur
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Re: whadda yah think?

Post by Leedur » May 25th, 2019, 9:53 pm

Having both parents die from CHF (Dad age 60 and Mom 89) and in my 5th year after diagnosis, I would possibly expect the same ending. Unless an accident or some other illness takes me out. With the ICD it's not likely to be Cardiac Arrest. Would assume someone that had the defibrillator feature shut off might be subject to this. From numerous posts here SCD seems to be a preference if one has a choice.

Stella Blue
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Re: whadda yah think?

Post by Stella Blue » May 26th, 2019, 1:54 am

I had forgotten Bob's weariness towards the end, but it came back reading these posts. That is one of the things he wrote about that was most helpful to me, as I started to understand my mother's state of mind. She kind of checked out pretty suddenly at a point where she was ill (CHF) but could have had some additional time if she'd gone to the hospital, etc. (She did not kill herself, didn't mean to create that impression, she just announced it was time to go, stopped eating and died within a three-day span.) Both my brother and I had some difficulty dealing with this, and the fact she was so ready to leave us all behind, but after reading Bob's posts, I started to get it.

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mrag
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Re: whadda yah think?

Post by mrag » May 26th, 2019, 2:02 am

Have you Googled “how to die by chf”? Some interesting articles. I’m not yet fully absorbing your particular goal, but I enjoyed your introductory summary of how you got here by crashing into a tree so I’m sure there will be some pleasure on reading how you’re leaving. :big-hug:

Meanwhile, anyone see the documentary How to Die in Oregon? I initially thought it somewhat misleading and boring. On reflection, I now better appreciate the stories of the people facing death and having the option of a “death with dignity.” It can be streamed on FandangoNow for $3 or for the cheapskates, join and get it on Kanopy for free.

Eventually your topic and related posts will apply to everyone. Maybe even spark some intelligent discussions which I realize are frowned upon, but can be insightful to those still functioning in society?

And for fun, anyone watching Chernobyl on HBO? Very intense. Ancillary to the core story line you may get a real perspective on the humanity of suicide under the proper conditions, of course.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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ROBO Pop
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Re: whadda yah think?

Post by ROBO Pop » May 28th, 2019, 2:57 pm

mrag wrote:
May 26th, 2019, 2:02 am
Have you Googled “how to die by chf”? Some interesting articles. I’m not yet fully absorbing your particular goal, ...
Yep, googled and oogled lots but felt the articles were somewhat lacking especially from a first person (AKA third finger) perspective.

Really the purpose would be ... ah crap I forgot again. Let me get back to you on that.
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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whiteheadjf
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Re: whadda yah think?

Post by whiteheadjf » May 30th, 2019, 8:47 am

I encourage you to follow your heart (your metaphysical one, that is) as to recording your thoughts and feelings during this time. I see it as an extremely courageous thing considering the difficulties you're experiencing. Over the last 10 years I've been off-and-on this forum, but the time I've been here I've learned and laughed at your comments and insights. Thank you and bless you for considering to continue that to the end. :big-hug:
non-ischemic cardiomyopathy
Medtronic Maximo II 2009
Boston Scientific 2015 (generator replacement)
Boston Scientific CRT-D 2016

slk123
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Re: whadda yah think?

Post by slk123 » June 4th, 2019, 6:09 pm

I think it's a good idea to post. I'm curious as to how it all goes. It's hard to read and imagine what Bob, Chrissy, and now you are going through, but it gives me insight into what could happen down the road. I hate knowing that they were and you are close to the end, but the unknown has always been more frightening to me than the known. I may not comment or lurk too often because this subject has always hit me rather hard, but I will still stop by to see how everyone is doing. I enjoy reading up on what's going on with us all.

It's been 4 1/2 years since my SCAs and I'm still trying to get back to a better way of life now that I'm living with CHF and am limited with it and LBBB. I know I think too much about what I can't do as opposed to what I can do, and the topic of death doesn't put me in a good space. But that is my issue to deal with and shouldn't stop you from doing what you want/need to do.

In the meantime, I'm hoping you get some relief from you SOB and gurgling and other ailments.
:big-hug:
Best wishes,
Stacey

CHF Jan 2016
ICD Nov 2014
LBBB Nov 2014
Sudden cardiac arrest Nov 2014
Arrhythmia Aug 1982

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