Hey Diane,
In my opinion, you write whenever you like. That is what we are here for, support. There are going to be times when we all need to vent, there are times when we all need some advice or a simple ear that will listen. If you feel the need, you write. In situations such as these keeping things bottled up can only lead to an explosion and that is no good for anybody.
Recognising that this could last a very long time is a good thing, but that doesn’t mean that pressure on those who care is less, in fact far from it. Personally I’d say that that recognition is a good thing. There are some people who think that post surgery everything should return to ‘normal’ but the reality can be far from that. Realising this fact can be a big step. This can all be very isolating and having people who know and understand this fact can be a HUGE relief. I know for myself when I had my neurosurgeries I felt very alone and groups such as Ben’s Friends helped me immensely, like “Phew, there are others out there who understand all of this…” rattling the same sh%t over and over in my own head and coming up with the same answers over and over was simply driving me nuts (OK, so more nuts lol ) I needed to get it outta me and support groups assisted me to do so.
Diane just know that we are here and if you feel the need to vent or just want to chat you do so.
Diane I wanted to chime in that you should never be concerned about how much you write or what you write. Not only are people interested/concerned about what’s happening but your story could be exactly what someone who is ghosting here needs to read! One of the biggest services Ben’s Friends provides is the ability to not feel so alone.
Write, rant, think out loud, ask questions (even ones for which there are no answers), ask for responses, or ask for privacy. Dear Diane, we’re here for you when you need us, and for as long as you need us.
As Azurelle says, one of the best things about Ben’s is that people feel less alone. We’re glad that we can help in this way. One day (who knows whether that will be a short time or a long time from now) you may find it useful or comforting to look back at your thoughts and at the interactions we’ve had here. So hang out here and just keep writing when it feels good to you.
Dear Diane, please write whenever YOU need to. I check on the site every day to see how you and Nicole are doing. No news can be good news. Please don’t feel an obligation to post when writing is just too much. Those of us who have been through the horrific ups and downs of post-aneurysm recovery (me with my husband three years ago) understand that recovery and the need for support are very long term. There will always be someone(s) here for you when you need us, to share experience, strength and hope.
Thank you everybody, I will keep writing for sure now that I know I’m not offending anybody. It is a long and winding road isn’t it. A funny thing happened today, I had to laugh because my grandson shaved his hair off and I asked him to show his hair to his mom, well you should have seen my daughter’s face when she saw the hair or shall I say the no hair? Her face changed from normal looking to a really frightened look, I had to re-assure her that this was her son, he then kissed his mom and she had that same frightened look but then she started to smile at him as if she was playing a joke on us we all laughed at that one. Sometimes it’s okay to have a sense of humour too, she squeezed her son’s hand with her left hand, something she did not do before which is a good thing. Of course the nurses just listen to you but seem to not be concerned about what family tells them, I wonder why this is? One thing that does bother me a bit and nobody has an answer is that my daughters hands are often very cold, I don’t mean normal cold, almost deathly cold, this has happened many times before but I never can get used to it. Has anybody ever had this experience? Also the water going into her trach tube is now heated whereas it was colder before, I hope this is not making her get pneumonia? Another thing to worry about.
Hey Diane,
No one is offended by your posts. If anyone has taken any offence they simply have no idea what you, as a parent, are going through. Those of us who do know those pressures completely understand. And we all need that sense of humour too, some outsiders may see it as a bit weird when we make light of something others may see as insignificant. But we NEED a bit of joy in times of stress, especially when that joy involves the patient in some way, even if it is in a small way. The medical staff can seem a little disconnected at times but having worked in the ‘care industry’ if staff get emotionally involved with every patient there is a very high risk of emotional burnout. This can often be why there seems a lack of concern.
Now, as for Nicole’s temperature. The human body needs to keep it’s vital organs at a regular temp, for this reason it keeps the blood around these organs. If Nicole is bedbound and is not moving her limbs there will naturally be less blood flow to the extremities. This will make her hands and feet cold. She may not be able to move her limbs physically herself. Now, WITH MEDICAL ADVICE, it may be possible to manually move her limbs for her and you may need the advice from a qualified physiotherapist to do this. I say ‘WITH MEDICAL ADVICE’ because manipulating limbs of an incapacitated person needs to be done in a specific manner, hence my suggestion of a physiotherapist. This will do 2 things, 1:Flex muscles which can help in maintaining muscle tone and 2:Assist blood flow which in turn will assist with body temp. But again and I cannot express this enough, You need the advice of a physiologist or a physiotherapist before attempting ANY manual manipulation as doing so without such advice could lead to causing Nicole a serious injury, so PLEASE get the advice prior to attempting any such thing.
And Diane, you are doing the right thing here. Sometimes it can seem like you are running in the dark, but you are doing the best you can as a parent for your daughter and that is to be commended.
And yes, we do care. We do this because many of us have been in a similar position to Nicole and we know how much that care given by family means, even if we can’t say it in direct terms, believe me, it’s worth more than you know.
Thank you Merl, thank you for making me understand why Nicole often has cold hands and arms sometimes, the nurse did not explain it as well. Nicole did not have a good night last night, she had to be put back on the ventilator but the hospital did not call me because they did not think she was in any danger. When I got to the hospital after my phone call this morning the nurse explained how Nicole’s breathing had dropped during the night and they did not want to take any chances so they put her on the ventilator. Again I’m told that this is her brain injury that is causing her to have these breathing problems. Just yesterday the doctor that I will be meeting tomorrow told me that her breathing was fine and that her main problem was that she could not cough? Well today she needs a machine to breathe and she slept most of the day, she had some periods where she was awake but not many. I bought her some music cd’s that I thought she would like and when I put the first one on I don’t think it was my imagination but I asked her if she remembered this song it was by ABBA and she said yes with her head, this may have been a reflex I’m not sure, I want so much for her to be able to nod yes!
So that’s about it for today, needless to tell you that I’m worried she was doing so well off the ventilator it was her 21st day off of it. I just called the hospital to get some news but I have to call back in 15 minutes. I will sound off for now and go to bed, good night and thank you once again for listening. PS It’s the first time that my daughter is not there to sing me Happy Birthday but I do have her voice in last year’s telephone message which I taped and I wish I could make you listen to it, it brings joy to me just to hear her voice once again.
Happy Birthday Diane, Im sorry that Nicole isnt able to tell you this year. Maybe next year, Im praying for a Mothers Day miracle for you. Wonderful that she has been off the vent for 21 days, That is progress!
Please dont stop posting. We care and want to know how things are going and that you are taking care of yourself as well. You are doing a wonderful thing advocating for your daughter. She is so lucky to have you, and so is your grandson. Your strength through all of this is remarkable.
Thanks for the birthday wishes, I did not celebrate this year but will I next year oh boy! Anyway yesterday was a terrible day for me, I spent over an hour listening to the ICU doctor tell me how sick Nicole was as if I did not know, the nurse was there with us too. It started off well enough but then he said he saw no changes in Nicole since she was admitted over a month ago and neither did the nurses that have been working with her. it’s always the same old thing, why is it that we see little things happening with her, like tonight for example my grandson said something funny and she started smiling at us, a real smile is that not a change. I think tomorrow I will ask them what their definition of change means? I realize she can’t just sit up and start walking around and talking to us but we see her gradually doing little different things, like again tonight I put on some bees wax on her lips and this I do every day now for months, tonight she started licking the stick as if she wanted to devour it and eat it? Isn’t that a change, she nods her head and says yes sometimes, isn’t that a change?
To me her biggest problem is to guard herself against getting pneumonia because she has to be suctioned, she can’t cough, her saliva doesn’t get swallowed and goes either on the side of her mouth or goes into her lungs and that’s not a good thing. The doctor says she has a bacteria in the top of her lungs, he named it but I can’t remember? He says just like we all have bacteria in our mouths? I suggested back tapping like the patients with I forget the name of the lung disease but they tap their backs to get the mucus. I also suggested a physiotherapist for her limbs and they don’t do that or something along those lines? The doctor also said that the hospital would probably be her forever home now but they will do all they can for her as long as needed…not very encouraging to hear, but then somewhere in his speech he said that they just don’t really know what will happen and added that 99 per cent of the people would not want to go on living this way and that Nicole’s case was very complicated because of me and my grandson not joining that 99 per cent of the population. Anyway I just did not feel great after the meeting I went back and stayed with Nicole for awhile then went home straight to bed. Today I cried most of the day and went to the last visit which is 6:45 until 7:30pm, to my amazement Nicole was off the ventilator, she was breathing on her own, every thing looked good, she was awake the whole time. My grandson stayed until 8:30pm and he said he felt she would get better, I did not discourage him with my pessimistic dark thoughts that I had yesterday. Thanks for listening once again! Tomorrow is another day!
Oh, Diane, I wish we could be with you and flip some switches. What you shared about Nicole doing is not simply some mindless reaction. She is responding to you and your grandson! I think you are absolutely right that she needs a physiotherapist (among other needs). My wife had one, and they were working with her limbs before she could even sit up. Be assured that you are in my prayers.
I agree with you saying that Nicole’s reactions are progress. My mom even opening her eyes or giving us a hand squeeze was progress to us and her doctors. The reaction is another one of those “small miracles”. Also, my mom was in bed for 3 months and they showed us stretches we could do with her arms and legs while she wasn’t even up and moving yet so that her muscles didn’t get tight. They should be happy that your family is so proactive with figuring out any way to get Nicole stimulated and healed. You’re doing an amazing job advocating for Nicole. We’re all still praying and thinking of you guys!
Diane, you have a role to play here, to help to complete the picture of Nicole’s health. The medical people’s job is to identify what is missing. Your role is to identify what is still there. Nicole is only going to benefit from the two sets of lenses watching her. Ongoing movement will keep her muscles flexible. If you are trimming her fingernails and toenails, you can massage and move her hands and wrists, feet and ankles. You have a part to play, and you are doing an awe-inspiring job.
I agree with what you suggest. However, there are times when certain limbs should not be exercised as in my wife’s case. That’s where a physiotherapist comes in, because that person should know what to exercise and can teach the patient’s family how to do it.
I’m very careful when I move her limbs, some of them just won’t move and I can’t force those, as you say I will let the physiotherapists do that job. I just do her feet, ankles, knees and hands and a bit of the arm up to the elbow, can’t bend more than that? Some days her limbs are stiffer I don’t know why that is it just is, if I ask the nurses they don’t know any more than I do but I will ask them anyway, they know more than me but they are not physiotherapists. Don’t know why my daughter doesn’t have physio, I will ask them tomorrow.
Got a great big smile tonight, my grandson was so happy he cried I was in shock. She smiled at us when we arrived and we started to kiss her and hug her, I couldn’t help myself I was so happy to see her awake, the previous day she had awake and asleep periods. She is still breathing on her own and they give her 30 percent oxygen still.
Today I had to make a phone call to help my grandson find out about his medical card that he lost and I taped it for Nicole to listen to, I thought it would let her know what is going on with her sons medical card that he had lost. She was dozing on us when I turned the recording on and she opened her eyes and actually looked as if she was listening and understanding the whole conversation, what do you all think about that? Progress folks, progress, smiles and listening to telephone conversations, this made us very happy and at peace in knowing that she was starting to communicate more, what a great feeling after 6 months. Thanks for listening!
Yes I’m certain that there is more than we know going on inside of her but I’m observing that it is not all of the time, sometimes she is far away or staring at the ceiling, other times she is sleeping, and these times that I feel that we are really together again are the times that I love the most and they are what keeps me going otherwise it would be very discouraging. So I love it when she sticks her tongue out at me, or smiles at me, or moves a few fingers for me or when she moves her mouth and seems to be trying to tell me something, these are really exciting moments that I could not live without.
I apologize if I’m not here writing you every day but when there is no change and they tell me that she is stable and I see that she is stable myself of course I do not write you guys. This morning I’m writing because yesterday I could see that they took some blood and I went to the desk to ask the nurse who told me her mucus was a bit yellowish and they were putting her on antibiotics again, I wish they would have told me but they didn’t, I guess they don’t want to upset me which it did, anything going wrong with Nicole upsets me but they have to do this to ensure she is okay and does not have an infection. I think I told you they changed her room, she is closer to the exit door now, before she was in front of the nurses station, now she has a camera in her room and believe you me it works, because as I was putting cream on her face to moisturize her skin the nurse came to the door and asked me what kind of cream I was using, so the camera works. She is breathing on her own, and the machine mostly is in the high 90’s but sometimes it’s in the low 90’s which worries me, people are normally at 98 to 100 which she also attains but not steadily. Her heart is averaging between mid 80’s to low 100’s like 102, 105 etc…her pressure is usually pretty good, sometimes a little higher than I like but the doctor is not worried about it because I told him last time I saw him.
I’m now working on getting power of attorney and her QPP which is a pension that everybody gets if they are sick and unable to work which she most certainly is not, this is an ordeal in itself as is getting power of attorney, looking after her house and her bills and everything else that she used to look after. Her son is living in her house and looking after things there with the kitty. As for me right now I have to start cleaning my house which has not been looked after for over 6 months if you can believe it. I’m taking it one day at a time and because the visits are only about an hour long each time 4 times a day I make it a point to visit at least once or twice a day and if I see that she is more awake and communicates with us of course the visits are more frequent. That’s about it for now, I’m still hoping for that miracle to happen and I tell Nicole every day that she will get better and to not get discouraged or worry about anything and I order her, yes order her to get better…she knows me so I’m hoping she remembers my voice when I bark my orders…this is always done discretely of course but I want my messages to get through to her when I hold her face between my hands and look into her eyes and I know she understands the situation.
Thank you once again to listening, this is not only about Nicole, but is also about my aging husband, and her son who also needs emotional help because he misses his Mom and wants her back the way she was! He was not always the perfect son and he is being very hard on himself for not having done more for her.
Hello everybody, just to let you all know that I am thinking about you and that I’m very grateful that I have joined this forum. You have kept me sane with your thoughtful words and your prayers. My daughter Nicole is still in intensive care and in stable condition. Nothing has changed I visit her every day for about an hour now because she will probably be this way for a very long time, nobody knows. This morning I am meeting with the ICU doctor this is their custom every 3 weeks or so the doctors meet with the families. I will give you an update on what is going on. I suspect nothing new has developed else I would have been told beforehand. Our families lives have changed dramatically because we were so close to one another, I think of Nicole all the time still even though it’s been over 7 months and I still have a little glimmer of hope shining thinking that my daughter will get much better but not anytime soon. Thank you all for caring, you will hear from me from time to time to not leave you hanging as to what’s happening with Nicole, and no matter what the outcome I will keep you in the loop. Thank you all once again, I still talk to God about it and it helps me get through the day. Hope all of you that have been through this ordeal will keep up the fight to get through this terrible illness, it takes years and years and it is hard I have never seen anything like it, you are all brave warriors, do not give up your fight and you will improve your health, do not stop trying no matter what. Love you all xoxo
Thinking of you Diane. You have shown great strength through all of this and I, personally, respect you for that. Please do continue to drop in and let us know how you and Nicole are going.
Thanks guys, yesterday I met with the ICU doctor, this one was more aggressive with me, he told me Nicole had no chances at all for recovery, she has pneumonia, and he is saying very plainly that he wants to stop trying to save her everytime something goes wrong? He also told me she was in pain and suffering, nobody ever told me this before, she does not often look like she’s in pain except when they have to suction her, sometimes she looks sad but who could be happy in her situation she can’t always be smiling. I think my daughter is a very brave girl with great strength but we all have limits my only problem is making a decision about her treatments being carried out to keep her alive? The last doctor I talked to said he did not know what the future held for her like this one did and personally I think this doctor just wants to liberate an ICU bed, he also told me it was hard on the nurses to see my daughter when they had to suction her, and treat her for this and for that? Is it not their job, I sometimes wonder if there is not a little bit of STIGMA attached to brain damaged patients, would they stop treatment on a cancer patient that wanted treatment and was capable of telling them he wants to live as long as possible? I sometimes feel that they think I’m some kind of monster, it’s really difficult for me too and they know it and play on it by telling me so, this is not about me it’s about Nicole and I’m her only voice. The doctor told me she was full of bacteria and that she would always get something, I have to wear a cape and gloves when I go into the room, I can’t even touch her without gloves which is very difficult for me. I have kissed her cheeks and head and hands and I have not been sick yet, so what is it with the cape and gloves, they say it’s to protect the other patients? I really am a bit at a lost, and was very saddened by the way this doctor approached me. I told him that I had to think over everything that he had told me but what I really needed was to get away from him and the nurse that was accompanying him. I gave him a paper that the lawyer gave me for the doctor to fill out, this is to give me the rights to make decisions for my daughter which I have not done yet, her son is the one with that power but he does not want it and agrees with my having it. The doctor thinks that once I have the power of attorney that I will tell them to stop all treatments and not to go on treating her with antibiotics, but I have not decided that yet and I do not know if I will ever, I want to leave this up to Nicole and her body will decide. Does anybody have any suggestions, I am open to anything right about now. My husband does not really want to hear about it and neither does her son so it is up to me right now. That’s about it for today, I have a 4:15pm visit then a 6:45 visit to go to, thank you all for listening, this is very hard to think about right now.
Their job is to prolong life, please don’t confuse that with prolonging death. Almost 50 years ago I responded to code about 2:00 am. It was for an 86 year old woman who had, had a brain bleed as the result of cancer treatment. We (the staff) were amazed there wasn’t a no code order. In the absence of such we started full CPR. I intubated her while the orderlies started chest compressions. I can still hear the ribs popping. About 15 minutes in the on call doc showed up. We were all hoping he would call it. He didn’t. Instead he proceeded to shock her. 15 times he shocked her. Finally after an hour he called it. The doc was chief of staff. Stupidly I asked - why??? His answer haunts me still. “That was my mother. As a physician, it was the wrong thing to do, as a son I had no choice.” Imagine this brilliant man standing there with his dead mother not 3 feet away turning that into a teaching moment. He even asked what we learned. I was speechless. But 50 years later I still have night mares.
I don’t know Nicole specifics but what I do know is this 995 times of a hundred when the say there is no hope - there is no hope. The constant filling and suctioning she experiencing is very much like water boarding - only worse. Because of the brain bleed they are unable to use any nsaid anti-inflammatory meds so the inflammation from the infections is causing constant pain. To control the inflammation of her lungs and brain the used and may still be using steroids. By this time her adrenals have started to shut down making her unable to process any pain meds.
The staff rightly believes they are torturing her and it’s eating them up. You have every right to be angry, but point it at the Annie that did this. Like Dr. John fifty years ago you are in an impossible situation. Heart or head. PLEASE don’t let your heart prevent you from hearing what your head should be. I continue to pray that wisdom is your guide wherever that takes you.
My suggestion is this yes let Nicole’s body decide. But without all the painful intervention and suctioning. If God is going to provide a miracle, he can do so without suction machines and antibiotics. Nor should, after these many months, anyone stand in his way if he is calling Nicole home.
