Living Nightmare

Diane, my wife and I hurt for you and Nicole. TJ has given you a very wise answer on many levels. We keep on praying for you.

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What about the trach tube in her throat that the doctor tells me is full of bacteria and being tube fed why did they wait so long in telling me all this maybe months ago when Nicole was stronger she would have survived without antibiotics and without being suctioned all the time. They told me being suctioned did not hurt her but the look on her face when they are doing it says otherwise. My head is in the right place but her son does not want to ever let her go he knows how sick she is but will not be realistic about it, I don’t want to let her go either but i’m kind of stuck between the devil and the deep blue sea. I wish her son would understand unlike the doctor and his mother I do not want to see her ribs being broken to bring her back to a life that will only be worse than before, are we prolonging her agony by hanging on? If I lose my daughter I will also lose my grandson, he has told me this many times and this is one of my great fears also, I could not bear losing both my daughter and my grandson. My husband is 80 now and he is also going downhill and does not know how long he can take all of this. I do not wish this on my worst enemy, it’s hard, it sucks and it is very depressing for all the family. The nurse told me that the antibiotics for Nicole were limited because she was imune to most of them because she’s had so many. I’m afraid that I’m also in a very impossible situation heart or head, I think had Dr John not kept on trying to save his mother he would have regretted it for the rest of his life and because he did try to save her and did not he made her suffer in the end and this too he will regret his whole life…so what is better, I still have no answer and cannot see the light on this one, I feel very stupid to still be hanging on to my daughter, I ask myself do the doctors and nurses hate me for doing this, now they are talking about putting her somewhere else in the hospital and if she ever needed a ventilator, they would bring her back to ICU and put her on the ventilator, sometimes I think they just want the bed in ICU, it is only a small ICU with 14 beds. I do not want them to break her ribs if she needs to be brought back to life and I will tell them this today but I do want them to put her on the ventilator if need be for now. What do you think, they say her trach is full of bacteria? Why can’t they remove the trach and just put in a new cleaner one? I will ask, also if she cannot swallow her own body liquids from her mouth and it goes in her lungs why can’t they give her therapy treatments, like lift her up and force her to try and walk with something under her arms or something like that? They say she has to be able to help herself, why? Anyway I’m not a nurse, not a doctor and I’m sure they are doing the best that they can with what they have. Thank you all for caring, and a special thanks from TJ who has hit the nail on the head only I’m too stubborn to accept it for now, I do have doubts that she is suffering they way this doctor told me just by looking at her face except when being suctioned, and why does she smile at us, and move her eyebrows, we think she is communicating with us, my grandson can ask her to move her eyebrows, stick out her tongue, send a kiss, he makes her do these things, and they all insist that these are reflexes? Sometimes I think she is just locked in there somewhere and can’t come out, the internet is full of these examples, who do you believe…here I go again but thanks TJ for bringing me back to reality, I think you are right in a way but what am I to do to my own child? Thanks for caring.

Diane,
You are in a heartbreaking position, and my heart breaks for you. A close relative of mine suffered a stroke several years ago at the age of 18. His name was Sean, and I loved hi dearly.After 2 weeks the doctors said there was no hope. His mother was not willing to remove life saving measures. What followed was a court proceedings to make a decision. The judge ruled with his mom and she had him moved to multiple facilities around the midwest. Each time the doctors said they could do no more. He was in a vegetative state. I visited often, and I saw what I believed to be signs much like you have described. They were said to be reflexes. Looking back now I can see tha they were, I just was not ready to accept it.He lived for a little over 2 years like that, until the pnemonia took over for the last time and he passed away. The day of his funeral, his father was not present. He collapsed preparing to burying his son and was in the same ICU bed that his son had occupied. He never made it home from the hospital. My mother buried the love of her life and her step son less than 2 months apart. She died a year later. It turned out the doctors were right from the begininng. His mother had to do what was right in her heart. She could not let go. The journey was hers.In the end, although he was young, every organ was destroyed and unable to donate. What he deteriated into is not something I do not wish to go into detail. Let me say it was heartbreaking. I do not tell you this to scare you, it is only my experience. My mother, sister and myself signed living wills with DNR orders shortly after the deaths.
I have had my own scare with an unruptured aneurysm and have not changed my feelings on it. I would not want to be kept alive like that.

I pray that God will help you with whatever you decide and bring peace to you and your entire family. Letting go can be a final act of love.

I am so sorry for all that you have been through. Your love for Nicole radiates in all your posts. I hope you did not find my post to be harsh, I only wanted to share my experience and why I check here on you every day. It is a story that I relate to and hope every day that you have good news.

Sending you a big hug.

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Diane,

Having worked with Hospice for 10 years and AIDS patients for an additional 10 years after that I know (somewhat, vaguely) what you’re facing. I also was the main caregiver for my husband, who died from cancer at 51 after being diagnosed at 47. I think you’ve it the nail on the head with your comment “only I’m too stubborn to accept it for now…”

It’s not about being stubborn, exactly, it’s about acceptance of the unacceptable. You’re in an unacceptable position and yet you have no choice but to somehow accept what is happening. That takes time.

And it is a battle between your head and your heart, but you have to let your head win. I could tell you horror stories of extreme measures taken for children with AIDS. After all, it’s unacceptable to have a child die so sometimes people take extreme measures to ward off death – not from selfishness or ignorance but from an overwhelming love that did not let them really see what was happening.

I’ve also seen miracles. I’ve seen people come back from having lasts rites given to live and go back to work. But at the end of the day the doctors and family and friends had very little to with it, it was all on the ill person and their body and their decision.

Letting go is the hardest thing anyone ever has to do, ever. And modern medicine makes it even harder because sometimes it allows one to “hang on” when there’s really nothing left to hang on for or to. From the day of his terminal diagnosis I told my husband it was up to him. What treatments to do, what not to do, when to stop. I was lucky, he was able to make the decision to stop treatment but I still had to figure out how to accept it. I had a much harder time letting him go than he had leaving. In face, it became clear when he was ready to go, I had to let my heart go and see it with my head.

I agree with TJ, let Nicole’s decide. Let modern medicine go. Keep her comfortable and supported but allow her body to make the final decision. And make no mistake about it, this is Nicole’s decisions, not yours. You are not doing anything to your daughter, you are simply allowing your daughter to make her own decision by no longer intervening.

Maybe she’s ready to go. Maybe she’s ready to stay. You’ll only know by letting her make that decision herself. At this point, no one should stand in the way of Nicole being called away. With no medical intervention she’ll go if she’s ready, she’ll stay if she’s not. I suggest leaving it up to her. You raised her, you know she’ll do the right thing.

Thinking of you and yours…
azurelle

Thank you Michelle, that is very sad and it appears that this is my situation at the moment. My daughter is on meds for her pneumonia, but for the past few days she has slept more than she was awake. She does not appear to be regaining any strength and she has not smiled at me in days now.

I did not find your post harsh at all, you spoke the truth and spoke from the heart and I’m glad that you did, this is a very difficult time for my family. I just hope I can find the strength to carry on whatever happens, I’m tired and depressed lately and tomorrow I have an appointment to see the doctor, he’s our family physician, he might also advise me because he’s also Nicole’s doctor. I will ask him if he could go and see her he just might because his office is across the street from the hospital. I’m glad your aneurysm did not rupture, I would not wish that to happen to anyone. Thank you very much for caring, I’m still caught between hope and reality but the reality is really beginning to sink in. Thank you once again for your post.

Thank you Azurelle for your post, I’m very sorry for the loss of your husband, 51 is much too young to die, you have been through a lot in your young life and that cannot have left you unmarked, your heart has been broken and it is hard to get back to normal I know that, I have lost loved ones in the past, mother, father, brother and sister all at young ages and now I only have my daughter Nicole, my grandson and my husband that 's it. I have decided to leave this in the hands of my daughter she will make the final decision as you say, I do not want her to suffer and am certain that they will keep her comfortable and only time will tell. Thank you all for your experiences in these very sad situations. It is not easy for anyone no matter how strong you are, I’m still hoping but as mentioned in the last post the reality is sinking in. Will keep you posted.

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My dear Diane, what a wonderful, caring, wise, considerate, kind and loving parent you are. What you are going through now and what you have endured all these months is beyond what most of us can comprehend.

I’m reminded of a bit of Max Ehrmann’s Desiderata:

> And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.

Wishing you peace and love

Seenie

Just a tiny little update, Nicole is still classified as stable, she is still in ICU and she has been breathing on her own now since April 30th. My brave little girl is still fighting for her life, the nurse told me this morning that Nicole woke up in the middle of the night and was in a confused state of mind and the nurse told her where she was and told her her name was Nicole and she went back to sleep shortly after. I asked the nurse isn’t this a good sign and she said not necessarily. This has never happened before so there is something going on in my daughter’s brain, my grandson finds her more responsive with little things and I find she seems to be more awake? When I got there today my daughter was in her chair watching a movie I grabbed her hand and quietly watched it with her while her son talked to her. Thanks for caring!

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Hi Diane,
As I read every detail’s of your post seem’s to me this is a normal thing for a recovering patient of ANNIE. Those up’s and down’s are being experienced it also by some of us. but you will do pass this whirlwind soon and after this she’ll be back with you.

LOVE LOTS,
Maes

Hi Maes, Sorry I took so long in answering, I just answered Azurelle and said most of what I wanted to say there. Perhaps you might have an idea as to what is happening with Nicole, she seems to be further away from us for some reason, as I told Azurelle could she be angry at me? I do hope things will eventually get a little bit better than they have been these past few weeks. The weather here is so hot people are staying in their homes. It was 45c yesterday and I thought I would pass out when I walked from my car to the hospital. The nurses told me to stay home because of the weather so I started going in the mornings instead. Thank you for caring about us. xoxo

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Hi everyone, it’s been awhile just thought I would give you an update on Nicole. She is still in ICU and she is breathing on her own still. I still visit every day except the odd day when I just need to stay home because of mild depression. I can’t say that this is easy because it isn’t, I still hope and pray things will get a little better but everyday the nurses tell me, she is stable and no change. I am accepting it but I can’t let go that’s for sure. My daughter is still in that bed or in her chair, I knit and crochet little things for her like shawls, headbands, lap blankets for her chair, bring her pictures to look at which she does, play videos and talk until I can’t talk anymore. A cousin visited her last week, she was the first one to visit in a long time and she told me she did not have the courage to come before but was very glad that she did and said she will be coming back, I certainly hope she will, they grew up together. I still miss her terribly. Will keep on updating you, nothing happening right now. Oh her chair broke and it took a week to get it repaired, but I had to ask them every day lol…but it’s back in her room now and I’m glad, she seems to prefer the chair to the bed.

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Hey Diane,
We fully understand that this is not as easy journey and please don’t be too concerned in regard to the acceptance and letting go. Some people align the two, but they are two totally different aspects. I am sure that although Nicole may not be able to show her appreciation there may well be a mental recognition when you are not there. I completely understand why some family do not have the courage to visit as knowing the ‘before’ and seeing the ‘after’ can be emotionally shocking. I say this as my niece required neurosurgery not long after my last operation and for me it was a bit raw to be visiting. I was a little unsure I could control my own emotional reaction and felt it would not be appropriate to show my reaction, so I avoided visiting. Once my niece had left the hospital environment I did visit and explained why, which she was fully understanding and accepting of.
Because hospital staff manage the place on a daily basis often some things do get over looked, but a family member staying on their case is not always a bad thing. Especially if you know that Nicole prefers the chair to the bed. Making sure she is comfortable is paramount to family, but it maybe not be as important to staff, so IMO, reminding them is not such a bad thing.

Thanks for keeping us updated
Merl from the Moderator Support Team

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Thank you Merl! Will keep you all updated!

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Thanks Merl, no you are absolutely right, the hardest journey I have ever travelled and I’ve travelled many tough ones, my whole family is gone and I just have my daughter and my grandson left and my husband. I’m not letting go, Nicole is showing lots of different moods and to me this is a good sign. Tonight she was awake throughout the visit but acted as if we were not there, it’s as if she was in a non chalant mood if you can understand that, her son asked me if I thought she was angry, I told her I don’t think the word is angry it’s more like pouting or something, you see yesterday we both stayed home. My car is still in the garage and I took a much needed break. Her chair is now fixed and she has her radio on all the time or her movies. We take good care of her and we love her and miss her old self but we both accept the way she is now. She has a urinary infection and on meds for it, no tube for her until infection is gone. Thank you all for caring, will keep you up to date.

A reoccurring subject on these boards is regarding acceptance. It can be really difficult for family members to accept the changes in their loved one. But that difficulty is minimal when compared to the patient’s acceptance. Little changes that individuals may consider insignificant can be mammoth for us, the patients.
A little personal insight:- I have a brain injury. My acceptance of my reality was difficult, no, wrong word, damn near impossible would be a better explanation. I was frustrated beyond measure. In hindsight, I did something silly and focused that frustration on me, to the point where that self blame was self destructive. I couldn’t change the reality of my situation and this was foreign to me. If someone is in control of me, then it’s me, but I had no control over my situation, so I had a massive internal conflict. So massive in fact that if ANYONE slightly crossed me, even if it was not related to my situation, I exploded. My poor wife got most of my wrath, but so did the hospital staff and anyone else I interacted with. I know I am not a nice patient, in my working life I was the helper, not the one who needed help and now I needed help. WHAT?? ME?? NEED HELP?? NO WAY!!! and I fought against it. My wife was coming to see me and she was late. When she arrived I tore into her. It wasn’t her at all, it wasn’t because she was late. My frustration with myself had peaked, it wouldn’t have mattered who I had interacted with, they were going to get both barrels. Luckily for me, my wife knows me all too well and when I’d finished my explosion she said “So have you finished” I knew what I’d done. It wasn’t fair and it was wrong of me to do so, but at that exact moment I was ready to explode. It was either going to be an internal explosion or an outwardly explosion and she knew of my frustration and disappointment, thankfully she was more understanding than I.
I do wonder if Nicole’s ‘pouting’ may be another way for her to express her frustration or disappointment with the reality of accepting all that has occurred. It cannot be easy for her to express all that has happened.

Merl from the Moderator Support Team

I’m sorry I removed this post because I could not download the picture but will try and get it right next time. A little update on Nicole, last Friday she was transferred to another ward just for a day and a half because they had a shortage of nurses she came back that Sunday morning. Her chair was also returned to the ward that had lent it to her so she was without a chair for a 4 or 5 days, today I did ask every day for a chair because what else does she have to do except to sit in bed or sit in a chair, the good news is that today she got a brand new chair this afternoon, it was like a miracle, nobody seemed to know about it and the man that set it up said it was a donation? Anyway now I can stop asking for her chair back lol…I did make a phone call this morning to another hospital where she was before and asked them if they lent other hospital chairs sometimes and I was told no? I really would like to know where the chair comes from to thank the people for Nicole, I was at the point of buying her one myself. Without her chair I found Nicole more quiet, less responsive to us with her eyes, this may all be in my head but you do tend to get paranoid when you are watching over your loved ones in situations like Nicole, she is so helpless. I guess I’m like a tiger mom watching over her young and protecting them. She is still breathing on her own which is in itself a miracle, she still has to be suctioned, more so during the night than during the daytime. She is given meds for her joints so they don’t get all stiff on her and now I have to wear a mask when I go in and see her because she has some sort of bacteria in her lungs, the nurse said her lungs are a bit like a white sink with dirty spots on it. So that is it for this week, will keep up with Nicole’s story as long as she is in hospital. I’m still waiting for a miracle and I’m still hoping but deep inside I have very mixed feelings about all of it, I keep repeating the nightmare in my head, I’m getting very depressed over all of it but I know I have to overcome my own feelings and keep going for my daughter. A special thank you to you Maes and everybody that sends encouraging and wise words, very much appreciated.

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Hello friends, I’m just letting you know that I have to meet with the ICU doctor on Friday and I know that I will have to make another heart wrenching decision regarding Nicole. It’s a long story but last week I suspected her shunt was not working because I found she was sleeping more and I told the doctor in the ICU, he did not think I was right but to make a long story short a few days later they found that I was. They wanted to know what I wanted to do, operate and put another one in or to just let it go and after much thought I decided on an operation one more time. Today a week later she is still on a ventilator and not able to breathe on her own, this is what they tell me, her oxygen is at 30, her pressure is a bit low. She however is more awake but does not seem to know me I am lost and do not know what to do. They tell me even if she does start breathing again she will be the same as before and never get better. The neuro told me the shunt she had before did not have a valve on the end of it but he had put one in, that very same day he told me the shunt was not working and I asked him what he would do and he said he would not operate again but told me to hurry up and decide because this was a pressing matter. Well it’s been a few days and all seems normal except for the ventilator so now what to do. My husband is saying the same as the doctors but not in so many words, my grandson is beginning to go that route also and as for me the one that has to decide I’m afraid I do not know what to do. She is alive at least but what do we call being alive when one can’t eat real food, or talk to anyone, or not even being able to breathe on one’s own. I would like your opinion on this, I really have nobody else to turn to, I know it’s tiring for the family but this is still a life isn’t it, Nicole is still a person with rights, I just wish I would know what she would want to do, I have asked her but of course she just looks at me and cannot even blink yes or no. Thank you for listening, tomorrow is the day of the meeting and I’m not looking forward to it. I warned the nurses that I was bending towards life and not death but if this fair to my daughter, is this what she would want, It’s sad that we have never discussed this beforehand, this is a discussion that we all should have with our loved ones.

Thanks for caring.

Diane,

I have been praying for you almost daily. I cannot tell you what you must do. Questions of life and death are the most difficult when it seems like we need to make them. If I were in your situation, I would have some of the same thoughts you do.

But I do have a question for you, something for you to think about. What would need to happen for you to agree with the doctors, your husband, and your grandson? Is there some circumstance that would help to you agree with them, or is there nothing? You probably would not want to hang on just for the sake of hanging on.

When my wife had her ruptured aneurysm, one of my first questions was whether she might ever again have some level of normalcy in life. Their answer was that she might, even though at that time they could not possible know. So we forged ahead, and the outcome was good even though different than before and different than other people. Your doctors are telling your something different than I was told.

Anyway, I pray that you have the wisdom to do what is best.

Arlie

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Dear Diane,

Thank you for posting. We do care, and you are in our thoughts even when this thread goes silent. We are here, and we care.

There’s no way of knowing what is right for another person, unless, like you say, that’s a discussion you’ve had with your loved ones. The time for that, in Nicole’s case anyway, is unfortunately past. Those are things that only they can know. I cannot know what’s right for you, any more than you can know, with certainty at this point, what Nicole’s wish would be. All you can know is what you would want if it were you in that situation.

If it were me (and I’m not Nicole), I would want to live only if there were a reasonable prospect of my regaining the ability to enjoy life, even if that were a life of limitations. Enjoying life for me would mean the ability to interact with those around me, my environment and the world, or at least have a reasonable prospect of that happening. In ADRauche’s words, I’d want to have a chance of “some level of normalcy in life”.

I am not Nicole. But if I think of being in her situation, I think I’d be ready to move on from a stage which holds very little promise of normalcy for me. I’d want my family, particularly the younger members who have so much life ahead of them, to be able to move on too. I’d want older friends and family to be able to move on and be released from the crushing burden of my care and decision making. I’d want my carers to know that they did their very best for me, and that I appreciated their efforts, but that the time had come for me to move on to whatever stage lies beyond our existence here on earth. That is what I would want. But I am not you, and I’m not Nicole.

I’m not a religious person, but I do have a deep appreciation for some of the timeless and universal wisdom that The Bible holds for us. One of my favourite passages is Ecclesiastes 1:3 . I hope it comforts you the way it comforts me in difficult times. I’m an old girl, a teen of the sixties, and The Byrds old musical version is my humming tune of choice when life gets really tough. (Oh the things these old folks do … :wink: )

Like ADRauch, I hope that you are able to make the choice that Nicole would want for herself. For me, that would be the right choice. But I’m not you.

As always, wishing you strength and confidence, peace and love.

Seenie from Moderator Support

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Diane,

After reading your most recent post numerous times I found myself with the same question over and over: Is Nicole a “person” at this point?

That is, is Nicole really there? Or has the thing that made Nicole Nicole gone? The body that held Nicole is still here, but is she? Is Nicole, the daughter you raised and know and love, in that room at all?

Letting go is the hardest thing anyone ever has to do, ever. And modern medicine makes it even harder because sometimes it allows one to “hang on” when there’s really nothing left to hang on for or to. You mention that Nicole is a person with rights, which brings me back to the question, are you sure Nicole is there? Are you sure what makes Nicole Nicole there and viable?

My advice is to let modern medicine go. Keep her comfortable and supported but allow her to make the final decision. And make no mistake about it, this is Nicole’s decisions, not yours. You are not doing anything to your daughter, you are simply allowing your daughter to make her own decision by no longer intervening.

Maybe she’s ready to go. Maybe she’s ready to stay. Maybe the Nicole you know and love is already gone but modern medicine is stopping anyone from seeing that she left. With no medical intervention you will give Nicole the final say in what happens to her and to her body. I suggest leaving it up to her. You raised her, you know she’ll do the right thing.

With an ache in my heart, thinking of you and yours…
azurelle

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