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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by jonquiljo on February 13, 2006, at 3:39:25
I've hesitated writing about this - but lately I'm just falling apart. Things are just that bad, and sad. I take care of my wife who has a chonic degenerative spinal condition. She is in chronic pain, terrible pain - we have exhausted pretty much every medical proceedure and modality available at this time in modern medicine. It has been going on for 5-8 years. She is losing hope, and I am devastated. We are only in our early 50's. Life isn't supposed to happen like this, even though I know it does.
Things are further complicated by her mood. She has an anxiety disorder, whcih in combination with extreme pain and disability make for a disastrous combination. She is at the end of her rope, given up hope, and doesn't want to go on any further. Part of me says that I really can understand where she is coming from. Part of me loves her so dearly that the thought of losing her is unimaginable. I do know that she will last perhaps days, not weeks - even though I have fought dearly to keep her going all these years
Over the years we have lost most all of our network of family and friends. Chronic illness does that. You just withdraw. I have withdrawn as well. We have no friends to speak of, and definitely no family - no kids as well. She is devasted. I am devastated. We are the closest of all couples -soulmates -and it will soon come to an end. She doesn't want to go on, and is determined to end her suffering. I've tried for years to cheer her on, try not to give up hope. In the end, I have failed. I know her well, and someday, soon, she will end it all. I really don't see that there is anything I can do - despite my fervent tenacity to hold on and keep trying to find things to hope for.
I feel sad for her life - and the way it is turning out. It is horrible to watch someone so vibrant become disabled by tremendous pain. I am so frustrated having gone to medical practicioners almost as a full time endeavor over the past 5 years - and coming up with nothing. We have even been to Europe for "experimental' surgery.
I just don't know where to turn. I am desperately afraid for her, and, yes, for myself as well. The years have taken their emothional toll on me too.
I don't know what to expect anyone to say to all of this - even if they read this far. It is just so sad that I feel like screaming in despair. Thanks for listening.
Jon
Posted by deirdrehbrt on February 14, 2006, at 21:07:29
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
Jon,
Your story breaks my heart. I can see how much love you have for your wife, and the tremendous toll this has taken on you both. If you're here, I'm sure that you've researched your wife's condition exhaustively. Have you considered alternative therapies? Even if she isn't cured, if she finds just a bit of relief, it might be worth it. Sometimes non-traditional, non-western or naturopathic methods can offer some relief when traditional western medicine can't.
I can't offer you anything other than my sympathy and my prayers. You certainly have both.
Blessings,
--Dee
Posted by sleepygirl on February 14, 2006, at 23:28:31
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
((((Jon)))) What a difficult time you both have had. My goodness, life is certainly a test of courage and love sometimes. May you both find solace and comfort and some breaks from pain.
Posted by Sabrina0805 on February 15, 2006, at 4:34:00
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
I wish I could offer words of comfort but find I have nothing constructive to offer other than that your story touched me deeply, as did your love for your wife.
I wish you many good blessings and strength.
Sabrina
Posted by jonquiljo on February 15, 2006, at 5:58:15
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
Thanks all for you kind words and support. Right now, its just what the doctor would have ordered for me. You're kind words and thought mean more to me that you can possibly ever know. Things here are slower and sadder. I've just got to hang in there. I have to be strong (at least seem to be) for her - as well as our dog - she is the "innocent" in all o this.
I don't know howm many days we have left, or if any. I guess I'll put one foot in front of another for a while, I just gets so lonely from my end. Oh well, such is life.
Posted by Sabrina0805 on February 15, 2006, at 7:10:18
In reply to Re: Caretaker blues ...., posted by jonquiljo on February 15, 2006, at 5:58:15
Please share as often as you would like to or need to during this difficult time.
I know that you will always find support.
You already take good care of your wife and dog, but please take good care of you too!
Sabrina
Posted by fairywings on February 17, 2006, at 14:57:23
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
((((Jon)))your story is so heartbreaking, and tragic for both of you. I"m so sorry. I wish there were some words to offer, but there aren't any words for what you're going through.
I'm sure you've tried everything, but I just thought I'd throw this out there...just in case. My dad suffered horribly with pain before he died, and they put him on Duragesic pain patch after a spinal block didn't work. I don't know how much it helped - it seemed after that he slept all the time.
You are both so blessed to have each other.
fw
Posted by damos on February 19, 2006, at 15:19:27
In reply to Caretaker blues ...., posted by jonquiljo on February 13, 2006, at 3:39:25
(((((Jon)))))
You've stayed when so many would have left.
You've loved till there was no more love to give, and then found a little more.
You've fought and tried and continued to believe, when it would have been so easy to give in and give up.
You've cried and hurt and railed and given all of you that there is to give.Jon, this is the greatest victory and greatest gift to your wife, to us, to humanity. I share a house with someone who has MS and much of what you describe is so very familiar to me. My heart truly goes out to you and your wife.
Please don't feel sad for her life, for she has known love in all it's colours, and in it's greatest glory. I was only ever able to give my grandfather one gift - and that was permission to go. The hardest gift of all.
Please know that you have not failed her, not in any way.
Please stay in touch and talk to us, please. Thank you for sharing your pain.
Damos
Posted by jonquiljo on February 21, 2006, at 14:41:32
In reply to Re: Caretaker blues .... » jonquiljo, posted by damos on February 19, 2006, at 15:19:27
I found my wife Friday morning after she took a tremendous overdose of narcotics. I thought she was dead. She survived, with no apparent physical damage - miraculously. I don't think I will ever get the image of what I saw out of my mind.
We are both looking or psychological help. We are taking it day by day, hour by hour.
There are so may emotions for the both of us - good and bad.
I have to think about myself too, however. I cannot go through that again. I feel so alone and sad. I am desperately alone and sad.
I thank all of you for caring. I need the friends, although I really don't know any of you.
Posted by jonquiljo on February 21, 2006, at 14:56:19
In reply to Re: Caretaker blues ...., posted by jonquiljo on February 21, 2006, at 14:41:32
I am just a sad, totally desolate middle-aged man. On the outside, our lives look so wonderful. But on the inside, in reality, all is so desperate and sad.
Life gets so isolated when you are a caretaker for someone you love. Life gets isolated and lonely for the patient as well. You lose friends, acquaintances - most contact with the outside world. From there, the relationship between caretaker and patient becomes distorted. You become a prisoner of your situation and your emotions.
I'm not sure what I'm really trying to say here. Perhaps someone else can figure it all out. Thanks for listening.
Jon
Posted by Damos on February 21, 2006, at 15:23:04
In reply to Re: Caretaker blues ...., posted by jonquiljo on February 21, 2006, at 14:41:32
Hi Jon,
I'm so sorry, for both of you. Yes, please get some help, it's so very important that you are able to talk to someone about what happened, and where you go from here. Important for both of you.
Just so you know I'm a 41 year old man. So much of what you say is/has been true of my situation too. My roomy actually asked me if I would help her end it when it became too much. So in my own way I understand, even those things you can't quite find words to explain.
Please talk to someone and to us. There are a lot of conflicting thoughts and emotions and internal pressure that you need to be able to get out into the open so they don't eat you up. Both of you.
Please take good care.
(((((Jon)))))
Posted by jonquiljo on February 22, 2006, at 5:42:09
In reply to Re: Caretaker blues ....****Trigger**** » jonquiljo, posted by Damos on February 21, 2006, at 15:23:04
Damos, thanks for the reply. I'm relatively new to this board, and do not understand the terminology such as "trigger" etc.
To be honest, I feel that she has been terribly selfish dragging me through her suicidal desires all these years. When you committ your life to someone, I don't think its fair that they put you in the position of having to anticipate their death - day by day. Its been going of for over 4 years now, where I have expected her potential death each day I come to get her in the morning.
Perhaps I am being selfish. Or perhaps I have reached the end of my rope when I see 16 years of excessively selfish behavior. My emotions are running wild. I'm afraid to get up, as to what I might find in the morning - we sleep in separate bedrooms, so I don't see her until the night has passed.
Jon
Posted by Damos on February 22, 2006, at 15:32:04
In reply to Re: Caretaker blues ....****Trigger****, posted by jonquiljo on February 22, 2006, at 5:42:09
Hi Jon,
Basically we put ***Trigger*** in the Subject line of a post to let others know that there is stuff in the post that may trigger them (cause flashbacks, remembrances etc) and be upsetting to them. Some we even try to specify in the subject for example, CSA (Child Sexual Abuse)and SI (Self Injury). So I put the trigger warning up because of the suicide content of the post. Don't worry I only learned because someone else told me.
It helps us take care of ourselves (and each other). Most of us still read the posts with triggers, but seeing them means we are able to prepare ourselves for the possible content.
Jon, to me what you said seems like a pretty normal response and why I wanted you to talk to someone. She may feel that she's been selfish too and a burden to you, so it's important to you both to get this stuff out. The constant pain and heartache is enough without all this repressed feeling. I'm so not an expert in this stuff. But I do know only too well how these feelings can eat you up and make things that much worse.
For example I had an instance last night where I realised that once I walk in the front door I have no privacy and no real existence of my own, no right to a life of my own and it broke my heart.
Your feelings and needs matter Jon, they matter a great deal. Please stay in touch.
(((((Jon)))))
Posted by jonquiljo on February 22, 2006, at 19:27:55
In reply to Re: Caretaker blues ....****Trigger**** » jonquiljo, posted by Damos on February 22, 2006, at 15:32:04
Damos, thanks for the reply. I've got a few minutes while my wife is talking to a therapist via phone consult att he present time.
Emotions are running strong here. She is angry that I betrayed her trust and didn't let her die. I actually thought she WAS dead - so only time will work with that one.
I do feel that she is being selfish in terms of me. How does she expect that I am to deal with this? When she tries again - what do I do? Watch? You see my dilemma.
I've been extremely close to her for many years now. The past few have descended in to a co-dependecy of caretaking/patient - death and dying. I'm about to pop. At 52, I thought I've been through most everything in my life. Believe me, this beats it all.
I think I understand it from her perspective. I am just being tortured myself. WHat can I do???????????
Posted by deirdrehbrt on March 1, 2006, at 23:27:50
In reply to Re: Caretaker blues ....****Trigger****, posted by jonquiljo on February 22, 2006, at 19:27:55
Jon,
I don't know what it's like to have someone ask for help in ending their life, so I don't know how I would react. If it was someone I love, and they were living an unbearable life, would I feel them selfish? I honestly don't know. Certainly I know I would miss them terribly if they were gone.
Then again, I've been on the other side of this discussion. I have Bipolar Disorder, and have suffered terribly, and have tried to take my own life a number of times. Was I selfish? Maybe, but when I was ready to die, I wasn't thinking at all about family or friends. I couldn't. It wasn't that I didn't want to, but that the pain was so unbearable that I didn't have the capacity to think of anything other than a way to end that pain. When I did think about family, all that I could think of was how I was ruining their lives, and how they would be better off without me. It wasn't selfish in my mind, but freeing for them.
Pain, physical or emotional, alters your perception. It destroys your objectivity. It infiltrates every thought you might have. It taints what would have otherwise been positive.
Far from being selfish, your wife may be also thinking of your needs, but through the cloud of pain. It may be quite difficult for her to see how your life is better while she is so much in need. She may see her death as something that will free both of you. I'm certain that she knows you'll mourn and miss her, but you will also not be saddled with the burden of her care. This might be her viewpoint.
How do you fight this viewpoint? Therapy could help. She probably feels that she isn't contributing to your relationship, that she is little more than a burden. Most people who want to die feel that they have nothing to offer. Are there ways in which you can show her that she still contributes to you, to your relationship,to the greater community? Perhaps knowing that she still does contribute will help her with the depression that she is feeling.
I don't really know any answers, but maybe this will give you something to think about.
Bright blessings for you and her.
--Dee
This is the end of the thread.
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