I am facing a major life decision and am anguishing in scenarios. I use to think that as long as my mind is working I would want to keep living. But now I am facing kidney dialysis and possible 24/7 oxygen hook-up in the very near future.
I cannot imagine living tethered to a machine.
I don’t know if it is better to have these life options presented ahead of time or if one is more fortunate to experience a major medical emergency and then find oneself hooked to machines suddenly with little choice.
I am leaning to quality of life over quantity of days, weeks, or months via modern medicine machines.
What are the advantages? What are the disadvantages?
It has been my observation that when one allows invasive procedures one is at more risk than if one lives ‘naturally’.
What would you do?
I do not want sympathy here, I want your thoughts. Please.
I want to make this decision myself and not have it left to a loved one. I really need to hear how others think on this.
Thanks.
to say the least.
I’m sorry to hear about your health issues. WHile I don’t yet have them myself, I’d like to tell you about someone I know.
This lady is the most vivacious 80 something I’v eever seen. At our local rock club she engages all generations, and everyone flocks around her. She holds meetings at her house and no one minds a bit when it takes a minute to get her and her oxugen down the stairs. And when she moves the cord aside to start the rock we know we’re in business.
This is you decision. I just wanted to let you know one of your options.
Peace
This is a hard thing to talk about dispassionately as if there isn’t a specific person’s life involved and real sadness but I will try to do what you have asked and tell you how I feel.
I think my mind is more me than anything else about me so as long as my mind is functional, I want to go on living and to take any reasonable steps which can keep that mind alive. And I also believe that as long as I am able to be “me” that is what my family would want as well.
I know I would be sorry to lose my freedom and mobility but I would more sorry to lose the time I could have with those I love, with ideas I haven’t considered yet, with books I haven’t read, with people I haven’t met yet.
There’s no going back from the decision to do nothing but if I found that the decision to take the invasive steps turned out to be wrong, I believe that I and my family could find the courage to have the machines removed.
And now that I’ve done what you asked, I do want to say that I am so sorry that your illness has come to this and wish you the best possible result with whatever decision you do make.
This is exactly what I am waivering on. I use to think that as long as my mind was working I would be ‘happy’. But now seing the restrictions of living tied to machines before me, I just don’t know.
Yes, I think about my daughter, grandson and want to ‘stay’ for them, but will my being tethered tether them unfairly? It’s a mental dilemma for me right now.
I guess it’s come down to a moral issue. Can I morally refuse to stay alive longer?
It might be helpful to talk to someone who is in the situation you would be or someone who has lived with an severe mobility limitations like a paraplegic or quadriplegic — to get an idea of what you will be losing and what you won’t be losing and how to people reconcile that. And also find out how their family members deal with and feel about the “tethering”.
and took care of a quadrapalegic. I particularly watched her family. Her father couldn’t do enough, her mother could barely look at her.
I also had a dear friend with scleroderma chase cures, had so many surgeries, machines etc trying to stay alive and she just got worse and had no quality of life. I also saw the toll it took on her husband.
I am at that fork in the road and just don’t know which way to go. I need to hear how you all think about these things-the good and the bad.
I think that not being in the situation makes it almost impossible to give you advice because I’ve got nothing to base it on but a best guess about me and my family.
I do think that observing the situations you describe isn’t the same thing as actually talking to the people about them. The view you had of the situation was through your lens, not theirs. I know this is what I would do if I were trying to make the same decision you were — I’d want to talk to people who were in it who could give me a first-hand understanding of what it is like.
I think that’s very good advice. I’m also thinking of many people I’ve known (I worked 2 doors down from the dialysis center when I was a community pharmacist) who are on on dialysis and O2 and continuing to enjoy time with their families in spite of it.
I’m so sorry that you have to thinking about these choices, Rosie.
I would like to associate myself with AndiF’s comment above, with the additional caveat that as long as I personally had hours or perhaps even minutes of each day in which I was lucid and and suffered only manageable pain, I would continue with dialysis and oxygen. I would also give specific written instructions not to resuscitate me or to use extreme measures to prolong my life.
(((u)))
That’s how I use to think. I do have my living will, but now that IT is staring me in the face it is a bit different. Very different.
yes, I do not know how I would react were I in your predicament. I can only speculate. I would respect anyone’s decision for themselves, if and when they are faced with the problem.
Also, and I want to be very careful here and urge you to consider every possible reason for staying with us, but I do believe that it is possible to morally choose the no machines option.
I believe, at least, that if I felt that there were something I needed to finish or someone who needed to see me or talk with me, I would take the machines until such time as I had achieved some resolution of the unfinished business.
I would have to fight my fear of machine-assisted life, but I might choose to see if I could get past my fear before choosing otherwise. The only thing I would not want to try first would be permanent totally artificial respiration that would not allow me to speak or move from my bed.
You are in an unusually good position to be able to talk to others who use oxygen and dialysis, they will be able to tell you “what it is like” and give you invaluable insight.
I can tell you that I know people who use both and enjoy life and people enjoy them, although for some of them the months have sort of stretched to years.
The last thing you need to worry about is people who love you “feeling tethered.” That is a file not found.
And I feel ethically obliged to mention that there are millions of people who would love to have the option of choosing oxygen and dialysis.
It is a decision only you can make, however there is nothing wrong with asking yourself what you would wish your loved ones to decide, were they faced with that decision.
If it has come to a question of days to decide, I would choose oxygen and dialysis in order to talk with those other people who have them, and give the question fair consideration without feeling rushed, on top of everything else you are feeling.
I am very sorry that you are in this position, my prayers are with you, and I have already expressed my opinion about how valuable you are.
Rosee, I’m so sorry to learn this. I don’t understand your question about life support. Certainly dialysis is dependence on a machine. Being connected to a respirator and carrying a bottle of oxygen are two different things.
When I was recovering from brain injury, at first I thought it wasn’t right that I had survived, but am so grateful for it despite the handicaps it brought. When things are tough, that’s when you get these doubts.
It is only natural to question its worth – but life is such a glorious thing, we must struggle to keep it. Yours isn’t over yet. Now you’ve got a chance to stay alive – take it! I don’t think there’s any reason to think about being a burden on your family, it’s part of their life too. Anyone who takes care of another will say it is a blessing.
Start with reading Christopher Reeve (and others) for inspiration on how to cope. He had a respirator, which I can’t imagine. I know others who have accepted it gladly, and some who carry oxygen. Like he said – ‘Still Me’ – that’s where its at. You can probably find books from people in your situation. When you decide how far you’re willing to go, you can make a living will and ask your family to enforce it for you. Obviously that can be a harder battle than yours.
I was in a teaching hospital and they wanted to try all their skills on me. But thanks to the advice of a caring nurse, my husband stopped them from hooking me up to a respirator and feeding tube. I’ve been more grateful to that nurse than to my surgeon. If you have a strong will to live, eventually you’ll breathe and eat. So be prepared if you don’t want to end up in that position. We’re also lucky that I wasn’t an organ donor at the time, lots to think about.
This community needs you – hang in there, dear. We’ll try to be with you throughout.
I am 64 so I face a very real possibility of seeing a medical crisis someday maybe sooner than later. My youngest is a nurse midwife so she gets the very unhappy decision making to do. I have told her that if there is a chance that I can recover and have a quality of life then by all means resuscitate me. And that means that if I have gone into the crisis somewhat healthy and have the chance to recuperate she can weigh that into the mix. But if it looks as if I will be debilitated and unable to be independent, then let me go. My husband had leukemia and he was independent up until 2 weeks before he died. And I think he would have liked that rather than to be helpless and I think I would like to go quick rather than be helpless.
Gosh you really know where I’m at.
My biggest fear is being or feeling helpless. I don’t take pity well and there’s only room for one on my pity pot.
I need to hear this stuff. It just helps so much. Thank you! Thank all of you!!
Such a heavy choice, a very personal one. I can only speak for myself here. This has to be my decision. I have to make that choice not based on what others might what or think but what I need or want for myself. I don’t believe anyone ever wants to be a “burden” on ones family. I also think that the person that is ill feels they are a burden much more so than the family members ever do.
My mom collapsed after being on oxygen for several years and was put on a respirator and never came out of the coma. My sisters and I knew that she never would have wanted that yet there was nothing we could do because she didn’t have a living will. The neurologist said she was brain dead, the internist disagreed and he was the admitting doctor of record. SHe lay there for eight days before she started to go on her own and they finally agreed to take her off life support.
The point I am making is that it is imperative that no matter what you decide, you have it in writing and many say videotape your wishes.
I am sorry you are faced with these decisions right now. I love you dearly and have the utmost respect for you and Have faith that you will do what is best for Rosie just for today. Peace.
Thank you for sharing your story. That’s what I am hoping to prevent- the things that you and so many others have gone through during medical crisises.
And as you know, my husband is a recovering alcoholic- sober now almost a year and a half, and I’m worried that he’ll turn back to his old friend. I don’t know if he’s going to be able to handle this or if he’ll take advantage of this situation. Trust is so hard to get back. We are communicating better and I feel some hope and faith in that. But that’s also a double worry and I can’t really tend to his needs right now.
Its also another reason why I have reached out here. I need to hear sanity to guide me.
Rosie, please know that no matter what you do, what you choose for yourself, you are NOT responsible for your husbands staying sober. He is the one that will take that first drink or not, no matter what you choose. He has a good year and a half now under his belt and he may just surprise you. Maybe HE needs to take care of you now. If you need to talk email me and I will call you anytime.
alohaleezy at sbcglobal dot net. You know how to do it. Hugs my friend!
The thing is, Renee, you don’t know..and cannot know, how you will experience life on dialysis and oxygen.Yes I could be an awful existance. Or, it could turn out like my own has, as my body slowly lost the ability to move freely where I wanted to go.
At first it was a horrendous loss, and yes I suffered and thought my life was over. But the strangest thing happpened. As my body grew weaker, the rest of me startd to expand. I speak mostly about my mind, my consciousness of the world, of others, of life and all it’s meanings,my preception of loving and being loved..all of this began to shift and deepem. I know a richness of lfe now I had no clue about when I was well and “able.”
This is the same thing I watched my husband go through years ago, when he was forced to live on dialysis. He too had always said he’d rather die than be tethered to a machine, etc. But when the time came for him, he wanted to stay with us as long as he could. When he gfot so sick he couldn’t enjoy all of what he came to enjoy so much more fully, then he/we made th4 decision to let him go.
We are so much more than our physical bodies. So much more. And, as my daughter told me once, when I was so discouraged at having to ask for some help..”Who are YOU to deprive me of a chance to show you how much I love you?” That shut mE up awhile!
At the same time, I hold nothing but respect for anyone who is has suffered to the end of thier capacity to suffer amd still feel joy in b eing alive,who says “No thanks” to further treatment. I know that if I get to that point, that’s excactly what I will do too. I am just very grateful I did not act on this back in the early days of my disability, because I would have missed SO much living and loving.
My hearts is with you as you made this decision, and would support you whatever you decide.
like yourself, your input is so important to me.
I need this food for thought and knew I would find it here at Boo’s.
Thanks so much.
I’m so sorry you’re facing such an extraordinarily difficult fork in your path.
I’ve thought about this stuff a little more than most people, I suppose, since I’m also chronically ill with a degenerative condition. I’ve also had a few close friends who were terminally ill and so I have sat with them and processed with them while they made a variety of these kinds of choices. My general take on it is very much like what AndiF and DuctapeFatwa have already said upthread.
Fwiw, more specifically, if I were in your shoes right now, I think I’d take the dialysis and the oxygen. You can undo that choice later if it turns out to be wrong for you. I can relate when you talk about a fear of being/feeling helpless, and not doing pity well, since these things are also true for me. I don’t see helplessness in the use of dialysis and oxygen, though. I see someone doing that, and I usually think: fighter. So I think that’s a matter of perspective, and that you can choose to bring whichever perspective you want to the hospital, and that you can also choose to think someone else’s perspective is misguided or not useful enough to spend very much of your precious time thinking about.
I wish you peace of mind and confidence of spirit with whatever you choose.
suggesting is vascular surgery on my kidneys-similar to bypass surgery, but it only has a 50-50 chance of helping.
I’m doing my research and am concerned of the invasive damage that might bring more bad stuff sooner. I am exploring so many options and it is so overwhelming. I am trying to think and deal with it all as objectively as one can right now.
I know I cannot see into the future (although I have had a couple of semi-lucid dreams that #55 is somehow relevant) If somehow that is a ‘message’ I’m thinking that I should do all that I can now and at age 55 I can change my mind LOL! Maybe…
Rosee, if the vascular surgery doesn’t help, will it make things worse, or will they just continue progressing at the same pace?
I have no idea, but it is a concern of mine. Invasive surgery is well.. invasive and could open the door to other problems. I saw this happen to a friend who died in 2000 from scleroderma. She opted for all kinds of new treatments and her body couldn’t recover. Scleroderma is an auto-immune disease so any little infection can turn into a major episode. Plus this vascular surgery on kidneys is a fairly new procedure-5 years or so- and so delicate-microsurgery. Scleroderma will eventually attack the new vessels. We’re not good candidates for transplants etc. So that’s another of my choices I need to make.
we are going to live forever…..for people who have their mortality more noticeably etched on their body it is a matter of weighing it out on the scale of life and listening to your gut instincts. I had to walk in a similar fire concerning my son’s scoliosis and the fact that the only possible successful surgery was experimental, they were going to do surgery one way or the other but I could either go for something that they basically knew wouldn’t really work but at least they were all prepared to lose or I could try this new thing and perhaps have to live with the failure of what it did to my son going through it. Everything Josh has done has to be weighed out on the cost/benefit scale. His dentist wanted to put jaw extenders on him so that his jaw would grow big enough for all of his teeth and we wouldn’t have to pull any. Other people with his syndrome though have simply had teeth removed and things have been fairly uncomplicated there. I told the dentist I thought he was crazy. My son will go through enough as it is…..let’s not get cosmetically stupid just because we can!
you can get some success/failure rates about this kidney operation, and find someone who will discuss the risks with you honestly. It may not be easy to find out, but it’s possible.
I had my appendix removed, reasonably young age, and wouldn’t be here otherwise. Needing that took away my normal reluctance about major surgery, it was life/death.
I had a cyst removed, did a ton of research in advance, and picked my surgeon. That helped.
So I suggest: research, research, research.
If possible, I would get a second opinion re: all options (assuming that you have not already done so) before I made a decision and then go from there. Someone that I loved was in remission for a while (brain cancer) and then was suddenly hospitalized. The person got a 2nd opinion, which was contrary to what the original doctor suggested. In the end, the decision was made to go for quality of life (second opinion) as opposed to more chemotherapy, and the outcome of that was not promising, according to both doctors. (And the person had Medicaid.)
I’m going to suggest that you may want to consider removing the word “tethered” from your vocabulary–if I have understood all of this diary correctly, you will still have your brain functioning. And follow all of DF’s suggestions!
Might you not feel better and have greater clarity of mind on dialysis and oxygen?
You are in my heart thoughts.
I read this early this morning and have been thinking about it ever since.
My thoughts are that as long as you continue to enjoy even a few moments out of each day and you look forward with great anticipation and hope to seeing your family members or your pet, or sitting outside and feeling the sunshine and wind on your face, you should do everything you can to stick around.
“as long as you continue to enjoy even a few moments out of each day and you look forward with great anticipation and hope to seeing your family members or your pet, or sitting outside and feeling the sunshine and wind on your face”
Sometimes those little moments are better than months of regular life.
Dear Rosie,
I cannot help but think of my 89-year-old mother. If you had met her when she was a young woman of 79, you would have met a person who was so miserable that she wondered constantly why in the world she was still alive. Spinal stenosis, asthma, heart problems, constant pain.
Now, ten years later, she is vibrantly alive and many people consider her to be one of the most amazing people they’ve ever met, because she is an almost-90 year old with a timeless mind, a wonderful sense of humor, and she’s always on the go.
What made the difference? Time. Living through years of misery to get to the point at which her medications were finally adjusted properly and a pacemaker could help her. Now she still has all the same ailments, and no little pain sometimes, but she also has a spring in her step.
The physical transformation in her has seemed miracle enough but the thing I really want to tell you–the real miracle in my mind–is that during those ten years she went from being a bitter, angry, judgmental woman in many ways to being an open, sweet, and loving one. It totally transformed her relationship with her daughter–me, to the point at which I can’t even bear to think unloving thoughts about her now and I completely love and admire her and treasure her company.
I know it doesn’t work that way for everybody, but I just had to tell you this one story of how time–during which there was a lot of suffering–healed a lot more important wounds than bodily ones in our family. It scares me sometimes when I think, “what if she had died before this could happen?”
I really admire you for reach out and asking for people’s opinions.
What a beautiful gift for both you and your mother; another chance, a life-affirming transformation.
Thanks for sharing.
I have a great relationship with my daughter and want that with my grandson-he’s only 1 1/2 yrs old- and I know I’ll need to stick around longer for ME to stay in his memory. I actually thought I wouldn’t be around to ever see a grandchild, which makes him that more special to me.
But I also wrestle with the idea of him seeing me bed-ridden, but maybe that would help guide him to be a compassionate adult or it may scare him.
My grandfather lived with us when I was a child and naturally we were very close. He died when I was eight. Many of my earliest memories are of his reading to me while I cuddled in his lap and, when I got older, my proudly reading to him. I consider every moment I got to spend with him a special gift; his being sick never scared me.
My advice: try it initially and see what your quality of life is like. As my wife would say, get some data points before making a final decision.
Good luck and God bless you.
Rosie,
I admire the courage it took to reach out here. It can’t be easy. Especially if you are, as you say, not real big on pity. You’ll only find support here though.
I don’t mean in any way to sound simplistic or flippant but I have two questions for you.
First, will the dialysis be a constant treatment or will it be a sheduled treatment?
Second, can you fit that oxygen bottle in your canoe?
More seriously though, I can only say for myself that I would choose the treatment first which could provide more time to make more permanent decisions. I agree with Andi’s advice above in this regard.
I wish all the very best for you and your family.
Peace
and have learned that reaching out takes more courage than not.
Funny you mention the canoe/kayak as that would be one of my bigger losses should I never be able to do that. When one goes on dialysis there is a cather/port surgecally inserted either in the neck, stomach or arm and I don’t know how one will take a bath or shower etc., so that’s another issue..
I know there are small portable oxygen tanks but can they get wet? I just don’t know. I don’t yet know all my options. I’m trying to learn, research and find as much info as I can now so I won’t regret the decisions that I will have to make in the next few weeks.
Regarding bathing with a port, someone who has one will be able to explain the details, but I can attest that all the people I have known who had them were very clean and smelled springtime fresh. 🙂
I think there is a sort of waterproof patch that covers it for when the person is in water for whatever reason.
This is the time for you to harvest some fruits of all the work you have done, the people who can help you most are the people you have helped.
And a lot of people live tethered to something, wheelchairs, insulin or morphine pumps, leg or back braces, ostomy bags, prosthetic everythings, even just piles of pills. Some tethers are more annoying and bulky than others, but they are all blessings that allow those of us fortunate enough to have the choice to remain with our loved ones longer, and they with us.
A spirit like you have will be difficult to tether, I think, no matter what accoutrements you may have to learn to accessorize. 🙂
and here’s where I step in 😉 My MIL has a port in her neck. Simple procedure for bathing. Keep lots of saran wrap.;) She doesn’t take baths, she showers, and when she does that she covers the entire side of her neck in saran wrap.
I do remember my grandfather taking his oxygen tank into a canoe. (i think i was maybe 5 or 6 gonna have to call my mother to get the details correct.) my grandfather had ADPKD as well. he also had a port in his stomach so…I am no sure how everything worked. So take that fuzzy memory with a grain of salt until I can get it confirmed.
sorry to hear of your condition.
If I have any advice it is that life is worth living as long as you can enjoy a good book, or some great music, or your favorite foods, or visiting with family and friends. As long as pain (or coma) doesn’t take away all joy, I’d always advise opting for more life.
I hope you get some surprisingly good health news soon.
Best, Boo
I love to read and yes that would be a plus, but this disease has attacked my hearing and I am almost totally deaf although (through research- I did find this pockettalker with way better amplification than a hearing aid) but music sounds very distorted now. I miss hearing the birds singing more than music.
I’m hoping that there might be some new stuff out there that I haven’t heard of yet and maybe participate in some medical studies- the other reason for that is these medical studies pick up some of the medical costs which would be nice.
these past five years. Nobody began the process any earlier than a week before their actual death. I think because you are asking yourself these questions that it indicates that it isn’t your time to throw in the towel. I noticed with all three of my grandparents that a day simply seemed to arrive when they were ready and it was time. It seemed the body, mind, heart, and soul all had a special juncture that they all met at and the worries and questioning it all were simply released then. If you have a living will that meets your wishes I would consider that done enough with dying for now and I would continue on with your living.
roseeriter, I was disturbed to read about your circumstances. I wish you the best, however this may turn out.
Although I’m a little uncomfortable stating this, this is my thinking. As long as one can still derive at least some pleasure from life, then using the machines is worthwhile. To me, even a few daily moments of pleasure would be a reasonable tradeoff. But, of course, this is a personal decision, and I’m not in your position.
Hugs to you.
My mother has ADPKD (Autosomal Dominant Polycystic Kidney Disease). It’s genetic, she had a 50% of having it, as do all of the members of my family. No matter what you do…there’s end stage renal failure. She has chosen no medical intervention what so ever. When it’s her time…it’s her time.
On the other side of the coin….
My mother-in-law has Nephrotic syndrome. She has 9% of her kidney function left. They are talking about removing her kidneys completely because her kidney’s are spilling protein and polluting her body so much. Her sons (my husband and his 18 year old brother) are looking into whether or not they are a match for her so that after they take her kidney’s and get her body under control maybe she can get a new one.
Right now, my mother is on nothing….and my mother-in-law is fighting with everything’s she’s got. She’s been on dialysis for about 3 months now and it’s helped her out a whole lot. The main problem that she has with it is that: 1. it takes 4 hours. 2. it’s awfully cold in the room where they do it. and finally 3. it’s awfully boring if you have already taken a nap.
What’s my point in all of this?
I was very angry with my mother for a couple of years after she was diagnosed, because of the fact that as soon as she found out, she declared what she did. It took me a long time to figure out that it’s her choice, not mine. Now that I see what my MIL is going through…I am pretty sure that the treatment option is not for my own mother. They are 2 different diseases, with pretty much the same outcome.
My thoughts on all of this? I am glad that you posted this diary. I am so sorry that you have to make this kind of decision. I do hope that these comments help you out in some way, shape, or form. How mine will help? I have no idea. It’s 2 scenarios…my mother isn’t in as much pain as my MIL. My mom’s disease is slow progressing whereas my MIL’s has been quick and dirty. It’s been 5 years since my mom’s D-day. (diagnosis day) It’s only been just a year this month since my MIL’s D-day. My mom is still doing ok…managing her disease with diet. My MIL is about to have her kidney’s yanked out.
Either way…it’s decision that YOU have to be comfortable with. Not to sound too vulgar, but, fuck everyone else. I will be keeping you in my thoughts. Whichever decision you make, just know that I will be behind you every step of the way. Feel free to e-mail me anytime. You never know where wisdom lurks. 😉
How appropriate is your handle on this topic LOL! Serendipity I think – I love it.
You have experienced both sides of the coin that I am weighing. What to do? What to do? I am an analyzer and need to see both sides of most everything before I can make a decision.
I will put your email in my address book for future use. Thank you!
Heh almost considered not posting because of nick. It’s getting to be more and more not appropiate. Glad to see that someone might see some serendipity. 😉
Well, all I can say from my experience is choose what’s right for you. It’s not right that you have to make that choice, and personally that’s what I get angry with. The fact that you have to make this choice. But like with my post above, every choice is hard. Whether to fight it or not…
And again…anytime you need a different perspective I am here…if not taking care of my MIl…if I don’t reply right away…i will eventually 😉
Read the diary, but not all comments. Also saw what you wrote on Kos.
I’m sorry to hear you are not well. Think that sucks.
I completely respect your question. I’m of a mind that I wouldn’t really want to be on dialysis either. I just don’t like medical technology. I’ve got one artificial piece in my knee and I’ve never felt like a complete human being since. I want to die with my own parts. And I don’t want to be connected to machines. That is just my personal take on things. Death. I guess I might be ready for it. Especially if it was a question of it being a permanent reliance on machines for existence, and how well I could manage life on the machine.
It is your call. I could completely understand a good decision being, I’m ready to go. I hate that you would have to make a decision at anytime in the near future. Have been happy to read your thoughts here. But I can see it. And think it is a brave way to come to terms with the end of life. One I might well conclude.
Whatever your decision, I wish you peace and happiness in every moment you have. And whatever may be beyond.
A very good friend’s partner has MS. He spends a substantial amount of his time in pain and is confined to a wheel chair / motorized chair almost all of his waking hours.
He has regular self-medicated chemo and other treatments. His choices are to give up or go forward for each day that he has until he’s almost completely immobile.
This past summer they went with a group that assists MS patients and others on a 14 day rafting trip down the Colorado River. He came back thoroughly exhausted and couldn’t stop talking about how much fun it was.
Each and every day he is an inspiration to take what little or lot we have and go for it.
Whatever decision you make Rosie it will be right for you and your family. My prayers are with you and your family.
Hi Rosee,
I am writing up just this very thing today – went and got one of those legal programs.
Like you, I have been anguishing over end of life decisions, though mine are not for reanl issues. I will be operated on again, third time in 2 years, on February 27th.
As a fellow New Hampshirite, here is what I came up with, after much discussion with doctors and other experts.
These are tough decisions to make. Please email me at Maureen8atnetscapedotcom if you would like to discuss further.
Good luck, and please let us know how it goes.
May I use your directive as a guideline? I belong to the NH creamation society and have paid for that service etc. I like what you have stated about not wanting a mortician. Do we have that choice? Geesh there’s so much I am learning today. I so appreciate all these thoughts, tips and suggestions.
I will email you soon! Thank you.
Where do you live in NH? I’m in Newport.
I want to do this as correct as I can. I have heard so many horror stories of loved ones left to clean up the death mess of their parents etc., and we all remember the Schiavo case.
I’m scared but not really afraid of death, but the thought of people speaking bad of me after dying if I don’t dot all the i’s and cross the t’s will piss me off…LOL!
Hi Rosee,
Unfortunately I am not in NH right now – but stuck in Fall River, MA. If next operation works out-I’m heading back for dem White Mountains. My soul feels so shriveled up without our lifestyle and connectedness to the out of doors. For now, I cannot travel that far.
Of course I’ll share my programs with you. When you send me your email, I’ll give you my 800 phone number. I am nowhere as technically skilled as you, so you will need to talk me through it – okay??
The FIve Wishes Living Will? Just reading through that thing points out that there are a LOT of very complicated alternatives in planning for death in today’s world. Probably most of us in non-medical careers have no clue how many (strange) procedures could be started on us.
FIve Wishes — I think RubDMC turned me on to it. You see, my mom was dying in the midst of the Terri Schaivo debacle. Talk about making a person a promoter of death with some reasonableness! Yikes!
It’s only about $5 to get this document, and it’s worth $25. I odn’t care what form your state has, you as a person need to see this document. It lets you know what you need to know.
YOU need to have this filled out, and YOUR FAMILY needs you to fill it out. They need to know what your specific wishes are in different situations.
http://www.agingwithdignity.org/5wishes.html
http://www.agingwithdignity.org/
(If you’re in Seattle area, let me know, I have a ton of them on hand.)
Thank you so much for this info and link!
You betcha!
Please make sure Gramma M is aware of it, also. Thanks.
Rosie, my love and concern to you.
You are right, it is your decision and choice. It is wonderful that so many have offered you their thoughts and experiences about this. Whatever you choose, know that if you later don’t like your choice you can choose again from those current options.
I have no advice to give except to live every moment you have right now to the fullest. Love yourself and treat yourself well. None of us really knows when we might be off to the other realms.
This is a very personal choice and each will have their own reasons for whatever they choose. I personally will be very glad to go home when my body says it’s time. I am DNR and a donor. I figure the Higher Power or the universe or my body will decide when it is time for me to move on and I am fine with whenever that is. So my choice is to live, enjoy and appreciate every minute right now. But I have no driving desire to add more minutes or stay as long as “medically” possible. I am fortunate to be in very good health and that makes it easier for me. I also have no thoughts that if the choice is presented to me and I change my mind about it, that that wouldn’t be okay too. If I feel differently about it when the time comes, then okay, I’ll choose again.
I don’t do doctors or chemical medicines now and I really can’t foresee that I would change my mind about that. . .but if I do.. .no biggie.
If you meditate, I would suggest that you might want to meditate about these options and hand them over to the universe for some guidance, if that will bring you more peace. Go with what feels best to you. Your heart is always right.
Blessings and hugs,
Shirl
breathing exercises that help to calm me down, especially at night when the mind won’t shut off.
I do try to live in the moment and know the value of that, but I also know when dealing with the medical community one has to research etc.
In my early years with scleroderma I naively thought doctors knew everything-Boy did they prove that false belief wrong.
unless they know you well. Sorry to hear about your crisis. You said you can’t imagine life tethered to a machine. Maybe imagination in this case is your enemy. You and the rest of us who have been around for any length of time know from experience that imagination is a terrible predictor of how extreme change/crisis feels, whether positive or negative. It’s almost certain that the actuality won’t be the way you thought.
It sounds to me like you’re dealing with your fear by focusing on making a decision now. Are you afraid you won’t be able to communicate anything if the time comes? Otherwise it doesn’t seem to make sense to try and decide now, especially when you’re (if I understand at all) dealing with possibilities, not inevitability.
If and when you do decide you need to direct this decision, here’s something my nephew, about to be an ER resident, said last time I talked with him. He said he saw that a living will tended to be problematic in that it of necessity tries to spell out exact rules and conditions that trigger medical action, but the patient’s situation and outlook will almost always be rife with ambiguity and require interpretation by the medical staff, who don’t really know you and are unavoidably influenced by their ethical beliefs, employer policy, fear of legal consequences, ego, general outlook, as well as medical judgement that may not be a 100% concensus view.
Nephew has come to believe very strongly that an irrevocable (by anybody else, I think he meant) power of attorney is a much better plan. Apparently you can specify your wishes in as much detail as you wish/can, but the final decision is left to someone who can make it in a much broader context than can the docs.
Your wish to make the decision for yourself is one I deeply empathize with. Unfortunately that is rarely possible. Either someone who knows you and your life will make it or a doc who does not know you will decide how to interpret your instructions. I had to decide to let my dad go some years ago. It felt terrible at the time but I’m very grateful now that I was spared the guilt of foisting the decision on a doctor. I suggest you try writing your wishes and see whether you think they are really unambiguous enough that they will dictate the final decision.
I hope all this turns out to be merely a theoretical discussion. Keep us posted on where your thinking takes you.
is why I am trying to cover all my tracks. I’ve heard so many unnecessary horror stories and pain from ‘bad’ decisions.
I want to spare my daughter from having to make too many decisions. She has a hard time with making small everyday ones LOL!
seen the Five Wishes Living Will?
(URL posted elsewhere in thread by me)
And it is a bit personal, so bear with me. As someone who has outlived all the actuarial tables, I am not unfamiliar with the unpleasant subject of mortality.
It grieves me that such a thing should come to one so young, but you will be able to confirm, if you ask any elder person, the more elder the better, am improbably long life comes with a price. Every day, one is acutely aware that this could be your last on earth.
Every time you embrace a beloved descendant, or watch one play a video game, or chase his sister, or tease her mother for whatever the current must-have item is, there is an inevitable pain that it is not likely that you will see her as a bride, see him hold his first-born. Every night, when you lie down beside the one who has, after so many years, become not only part of you, but the best part, you cannot escape the knowledge that it may be the last time.
I wish I could tell you that having had so many years makes me content and quite willing to move along, and maybe for some people, it does. But I am greedy, and it may be that greed to learn something new, have another day, year, hell yes, SEE that descendant as a bride, it was unlikely enough that I should have seen her mother as one, now, wasn’t it, so why not? And if I can’t see at all by then, I will touch the silk of her dress, the softer silk of her cheek, and my lady will still be with me too, and somebody will sort of shove us in the general direction of the cake.
As horrible as it is, and I am notorious for pointing out just how horrible, this is not an easy world to say good bye to, and I will not pretend to give you advice on how to even contemplate the possibility because I have no idea. I do not want to say good bye to it yet, and I sincerely believe that is as good a reason as any that I am still here. It’s definitely a better one than the doctors can give, they can’t give one at all, and in fact go on a bit more than I consider polite on the subject of how I should not be alive, and occasionally I am certain I hear them whispering arguments that perhaps I am in fact dead, but in denial.
I have a notion that you share a bit of that unreadiness, and I just want to tell you that I believe that is a good thing. Go with it. Live. Enjoy everything. The color of your bathroom rug, the smooth feel of the soap, the softness of a child’s hand, especially if it is sticky. Enjoy scolding the child for getting you sticky, and enjoy finding out what the little hand is sticky with, and if there is more, go eat some.
Resist the temptation to dwell on the unpleasant details of last wishes and final this and thats. Do the necessary, put it in a box, or give it to your lawyer, or your friend or your plumber, or whoever, and do not mentally belabor the point. What will sadden your loved ones is your loss, not that you omitted one detail or another, or left a closet full of shoes. Forget all that, and wear those shoes.
If you need an oxygen tank, decorate it with sequins and stickers or paint mehendi designs on it, and go on living. If you need dialysis, I believe that medical science can do better for you than saran wrap to cover up your port, I think there are such things available at the CVS, if not, ask the doctors, no, ask a nurse, they are the ones who know all the useful things, anyway. If something hurts you, take a pill. Take another one, and get in that canoe.
Give your loved ones the gift of you, and give yourself the gift of every day of life that you are given.
None of us, young or old, healthy or infirm, knows how long we have to live. And the only way that we can adequately prepare ourselves for the death that will come to us all, at some point, is to live.
I gotta tell you…..
you’re one fine fossil ;o0
;o) with a smile of course
My dear Mr. Fatwa, you have outdone yourself and now I am off to find the Kleenex, or more likely, just wipe my nose on my sleeve and sit here in awe of your wisdom and kindness and humor. You are such a gem.
Thank you for the wonderful compliment, I did not mean to make you cry, though. 🙂
Thanks Ductape, that was truly beautiful.
touched my soul with this response. I’m thinking now that no matter what I’ll try to make it pretty and joyful.
I told my daughter that I would have to ‘borrow’ my grandson more often. He has this belly laugh that is contagious….
I haven’t read many of the other comments Rosee, but I did read AndiF’s upstream a ways. It comes close to my way of looking at it. How much of the time might you be on Dialysis?? The oxygen tank thing has been pretty well worked out. I golf a bit for recreation in the warmer weather. I get a couple of the national magazines on the sport to keep up with what is happening and new. Saw a picture of Evel Knievel on a golf course, with his oxygen tank and nose piece, playing his favorite game!
How you tolerate dialysis, will tell you a lot about your “quality of life” with the support that you need. To me the only way to find out how well your body tolerates dialysis, is go ahead and do it. If it becomes obvious that it is not going to work well for you, believe me, you will know about it soon enough. I hope you tolerate that procedure very well, that it becomes a minor inconvenience in your weekly planning, and that your recover quickly. Take care Rosee and best wishes.
there’s a way. I so hope that I can adjust to whatever happens. I play golf and it can be very peaceful on a course in the early misty AMs or the cricket filled twilight time.
Thank you for that reminder.
(NOT a “springing” power) to someone you trust, not necessarily a lawyer. Speak with this person at great length.
And don’t make any decisions now, except the decision to defer decision and to create an attorney-in-fact, who perhaps would only have power over this one important question.
Reconcile yourself to lots and lots of being “tethered” before you make a decision.
Pray a lot and ask others to pray for you. This often works. It doesn’t matter very much what you think about it, one way or the other.
I’ve read this and hesitated and read it and hesitated many times all day. Let me add this:
In 1993, I almost died. I was only 39. A surgeon made a terrible mistake. (I was supposed to have elective gallbladder surgery on a Tuesday. My gallbladder exploded the previous Friday, putting me into pain so terrible I fainted dead away several times. The surgeon came to see me on Friday, after an emergency admission to the hospital, had me pumped up on morphine, and blew it off, no doubt because he had things planned for the weekend. By the time he got around to operating on Tuesday, I had sepsis and was one inch from dead. The surgeon never tried to collect on more than $10,000 of his bill that was not covered by insurance.) I ended up having several surgeries, staying in ICU for 15 days, five weeks in the hospital, two months after that before I could work again.
I learned something: we really do have something that must be what they call the soul, a little candle of identity and memory and desire and faith that is immune from the pain and separate from the indignities of life near death in the ICU. I also learned not to fear pain, because I went through pain that is said to be even worse than major trauma or childbirth or torture (that is, involving a direct outrage to the vasovagalnerve), and I observed that it does NOT eliminate nor alter your core identity. Instead, the mind creates a kind of soft barrier that cushions us. We can be aware of great agony and near death–but the core of our hearts and minds is crystal clear.
I know a lot more about suffering, from my own experience and from experiences of family members and friends. I tried to find something above that might resonate with you.
Please hold on to life right now.
and I bet this lesson: “I learned something: we really do have something that must be what they call the soul, a little candle of identity and memory and desire and faith that is immune from the pain and separate from the indignities of life near death in the ICU. I also learned not to fear pain, because I went through pain that is said to be even worse than major trauma or childbirth or torture (that is, involving a direct outrage to the vasovagalnerve), and I observed that it does NOT eliminate nor alter your core identity. Instead, the mind creates a kind of soft barrier that cushions us. We can be aware of great agony and near death–but the core of our hearts and minds is crystal clear.” -has helped you a lot.
I remember talking to an elderly man who was recouperating from a coma and stroke and I asked him if he was able to think etcc., and he said Oh Yes! I could think and hear everything but I couldn’t communicate back, it was very frustrating.” I’ve never forgotten that.
I always believed that the soul part of us stayed lucid and must live on. Thank you for reminding me. Fear is a mean thing. It robs one of the good knowledge or things we use to know to be true.
Rosie, it’s hard for me to put myself in your shoes, because I’m not facing anything like that in my own life. But as a person who has struggled with depression at times, I’ve wondered what would happen if I were to have a serious medical problem during one of those down periods. Would I get motivated to fight? Or would I just let whatever was going to happen, happen? I had a very good friend with serious emotional problems, a lot of grandiosity that covered up some serious insecurities and depression. He developed a medical condition that required him to take good care of his health. So some of the time, he would be absolutely fanatical about nutrition, supplements, exercise…other times, he’d snort crystal meth and drink tequila. When he got really sick, he checked himself out of the hospital against medical advice. And he died. I always thought that he killed himself without actually pulling the trigger.
So I would want to ask myself, is depression playing a role in this decision? Depression is a sneaky, tenacious and treacherous opponent. It can trick you into thinking all kinds of things are true that just aren’t, and it can narrow your options in a way that restricts you from seeing the full range of your choices.
Forgive me if this has nothing to do with your situation, Rosie. But it’s the only advice I feel qualified to give you.
For years before I was diagnosed with scleroderma in 1991, I was seriously depressed-even had one suicide attempt because of the pain. I just could not understand why I felt so tired and miserable all the time and many doctors said that all my physical complaints were ‘in my head’. So I just spiraled down further. But after an emergency room visit for a pleurisy attack (I thought heart attack) a wonderful doctor started doing tests and I was diagnosed properly. The depression disappeared over night.
Since then I have read much about depression and it very often due to an underlying chronic disease.
So no, I am not depressed, just in a worrisome mood and trying to deal with the ‘demons’ head on.
right before the first extension of the rods that are part of my sons Titanium Rib. One of my friends was worried that I was depressed because my feelings were so tumultuous so I agreed to see a psychiatrist. After speaking with him and he confirmed that I was eating properly and also sleeping okay, he told me that I was doing as well as could be expected. When I shared with him my friend’s concern he said that he had no cure or pill for living my life. Sometimes it seems very hard but if someone were to take it away from me and give me something different I would completely refuse because this is “My Life”. I hope your life is rich and full today Rosie.
I can’t imagine what as a mom, you must be going through. Having a sick child has got to be the toughest aspect of being a parent. BUT your son is blessed to have you.
A day at a time and living in the moment are the answers for what we both are going through.
I also know that the caregiver job is much more difficult than being a patient. You guys are the real angels amongst us! There are some great caregiver websites out their.
LINK Here’s one. Gary did an article for us in Voices of Scleroderma Vol 1.
Dear Rosee,
Just read your sig line, and forget the time, and live your pasion ; )
Step outside this morning, regaurdless of the weather, and reach for the sky, open your arms, breathe deep, and smell your life. Stand there for a moment, and let it seep within you.
There will be no more questions.
I have a picture of a great lady, and her grandson, and the smile on their face….well, it says it all ; )
Need to see that one, again?
Wado my friend….
Thanks for reminding me:-) Love you!
I wish I had something earthshaking or even truly relevant to offer but I don’t know that I do. It’s such a personal decision and no two people can measure ‘quality’ in exactly the same way. My mom had ms and was physically dependent for many years. She also didn’t tolerate pity well but she did learn to accept help respectfully offered. It helped of course that she had done all of the same things for me at one time and then some. She loved learning new things and I wish the internet had been about at the time, a voice activated laptop would have made her even happier.
She seemed to know when she was ready, she wasn’t happy to go but she knew the time, it’s hard to explain this properly, pain meds myself at the moment…but she did know when the balance shifted from the plus to the minus column.
I guess I’m saying, try what you think best and trust that you’ll know when it’s time. Get your bases covered, put it aside and explore the new day.