Feeling very excited at the moment, we are bringing dad home from hospital tomorrow, I pray that things will go smoothly & dad will keep getting stronger each day..... I also hope that some of dads mates will feel comfortable coming to visit him at home, they would call by & see mum & ask about dad but they couldn't face seeing him in hospital... Will keep updating on dads progress. I think I can finally see that light at the end of the tunnel :) Big Smiles Alison 🙂
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Well done Alison, you are a wonderful daughter and a credit to your parents. Keep smiling. Mignon
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I am glad things are looking up. I hope your dad's friends do visit if that's what he wants.Sometimes people are reluctant because they feel the sick person wants privacy and sometimes they do.Some people don't like being seen at their worst . You have been great .
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Good news Alison, go from strength to strength, Wombat4
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Thanks you all so much for your lovely comments....Things are going ok, the nurse was here this morning & dads blood pressure is low, they have asked I stop his BP meds tonight & tomorrow morning & they will check him again tomorrow 🙂
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I cannot stop crying, I look at dad & I can't accept that this is what he has become....he is having a problem at the moment, actually it started yesterday at the hospital when I went to pick him up...he will be sitting in a chair then his eyes go all foggy looking & he starts to grab at things, could be his pyjamas or just into thin air, then his legs jerk it's like he wakes himself out of whatever is happening...I asked the nurse at the hospital yesterday what was happening & he said dad was having micro sleeps, also today dad was leaning on the verandah rail (both elbows resting on the rail)next minute this "micro sleep" happened again & dads legs buckled under him.......I called the Aged Care Assesment team this evening & they seem to think it's because dad is so exhausted...The last time dad had this happen to him was when he was in ICU over christmas with pneumonia.....If anyone can help in maybe giving some insight I would love to hear from you. I'm just finding things at the moment are really hitting me hard...
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Dear Sunshine, It is ok for you to cry. It must be so hard for you at the moment.Such an uncertain , scary time, a journey that you will never forget. Seek as much medical/nursing advise as you can to help settle your mind.You are doing the best thing for your dad in just "being there" with him. Buy yourself something nice today even it is just a block of chocolate. Thinking of you. Mignon
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It is very difficult for you at the moment Sunshine. Your dad is going through a lot with his illness and must feel exhausted, and you as well being his main carer. Take each day at a time. The micro sleeps are something else as well, they can be problematic if he has one and has a fall, you do not need that on top of everything else, and you would not want him just in bed all the time. Has he got a walking frame with a seat in it, so that you can take him for a short walk and if he gets tired or it looks as if he is going to have a micro sleep, he can rest for a while in the seat. Take care in this difficult time wombat4
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Hi Mignon & Wombat Thank you both for your kind words. My darling dad is now back in ICU, it seems there is an infection in his body somewhere & this is causing major problems, the dr's seem to think that dad isn't having micro sleeps but some kind of seizure brought about from high potassium levels & low calcium levels.This evening was very scary due to dad having a seizure then we couldn't wake him, eventually the dr's woke him up but the seizures are still happening.Hopefully when the blood results come back we will know what we are fighting.Tonight I will pray harder than I have over the past 10 months & wake up tomorrow & hope that things may be a bit better. Hugs Alison
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Big hug of support dear Alison. Hang in there, you are a tough cookie.Keep praying for your dad. Mignon
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Having a big meeting with all the Dr's & the team looking after dad, the meeting is this Wednesday at 10.30am, I'm pretty sure they are going to say that dad needs some form of palliation. I don't know what to do, I keep seeing my darling father suffering so much & I just want him to get better, I don't know how I will cope if they say he needs to go into a nursing home...I love my dad & I want to care for him, I know the level of care is high & also the community nursing have withdrawn their help because dad is too high maintenance...I'm just shattered by wht is happening at the moment & I don't know what to do.
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Hi Sunshine006au, You are doing everything that you can for your dad, if the community nurses think that he is high maintenance, then it may be the best for him, you and the family if he goes into care, he will have everything that he needs and will be constantly looked after by professionals, who will attend to his medications, feeding and well being, all the things that you have been doing. Up to this stage there is nobody that could have done more for your dad than you,but it seems that he needs a different level of care now, and you could probably do with some respite. Think of it as just sharing the load of everything up till now you have been doing. Wait until Wednesday to see what the options are, then you can do what is best for your dad. Be strong wombat4
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Dear Sunshine. I agree with what wombat has said in that , as hard as it is for you, maybe a respite can help you both , a time to re-group , so to speak. I know you will worry about him in an aged care facility, it is not what any of us want for our parents. I was looking after my beautiful dad 10 years ago in my home with the help of palliative care nurses and our local GP. My dad went for some "extra help" for a couple of weeks, and then returned home. It was hard for us both, but we both got some much needed sleep. Take care sweetie. I feel for you. Mignon
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Today has been horrible. I was at work & received a call to say that dad was deteriorating,dad was having problems with his breathing, low oxygen levels, low blood pressure.I called my son, daughter & brother. My son picked me up from work because I was in no state to drive,my mum was already at the hospital. When we arrived at the hospital I was so afraid to go in to dad, I walked towards dads room & turned & went outside because I felt like I couldn't breath. I then went into the chapel at the hospital,sat there for 10 minutes then went towards dads room, my daughter,her husband & my granbabies arrived so we went in together. When I sat beside dad he told me he was dying (he mouthed this due to being unable to speak) I held dads hand & begged him not too, I told him I couldn't go on without him...now I am so angry with myself for being so selfish..how could I say that, my poor dad is so ill & I go & say something like that!!! I should have told dad that I understood & that it was ok if he couldn't fight any longer but I couldn't say that because I want dad to get better & I don't know how to cope with this....We have been told that saliva is going into dads lungs & even though they are suctioning & giving medications to remove this from dads lungs it his highly likely that dad will get aspiration pneumonia again. They have also told us that they will not put dad on a ventilator again because it would be unfair for dad to keep going thru this,they have said that if things don't start to improve they will look at making dad comfortable...I don't want dad to suffer, they said that they would give dad morphine to make him comfortable...I'm so afraid of what is happening.
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Dear Sunshine, I will be praying for you and your dear dad today. It is such a hard time for you, as it was for me.I couldn't bear to think of life without my dad.But you both have a wonderful bond and closeness that will continue on. I still think of my dad every day after 10 years and the closeness remains. But today is tough for you.Be as strong as you can and just hold his hand, wash his face, whatever he needs, just be there... Mignon.
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Also, if you want someone to talk to I am happy to give you my number.
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Dear Sunshine006au, It looks as if the end may be close for your dad, as the nurses said, it would be unfair on him to keep him going just for goings sake. Yuor dad understands what is happening. You have been a wonderful support for him and he could not have asked for any better. you will go through your grief and time is a sedative, you will never forget your dad, but as time passes it will not be so painfull for you. When I was young I was out playing with my friend, I fell into a deep pond that was covered in ice, and as I tried to support myself by grabbing the ice, the deeper in the water I got, I could not swim, I was screaming and terrified, all of a sudden my vision was from behind my friends shoulder who was standing on the bank, and I was looking at this terrified little boy in the water, and I felt I was in a wonderful place and felt a peace and calmness that I have never felt before or since, and that was over 50yrs ago,If someone had given me the choice at that point to go back into the water to carry on with my life, or to stay where I was, I would have chosen to stay where I was, but my friend had grabbed a branch and held it out to me, and as soon as I touched it I was back in the water again screaming and terrified. What I am saying is that you dad is probably in the peaceful calm place, and if given the choice ? My lovely wife of 40yrs suffering from her terminal cancer, just before christmas was put on morphine and I held her hand, stroked her hair and after a few hours she went to sleep, and I knew she was in that wonderful place. Be strong for your dad wombat4
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Dear Wombat. Wise words from you .Must be tough for you too. Mignon
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Hi Mignon & Wombat, well my dad is such a fighter, he made it thru another close call...at the moment dad is still having some probs with his breathing but other that that he is ok, all his stats are good,ie - Bp,bloods,kidneys, oxygen lvl still a little low at 87%. On Tuesday when dad was getting over the acute attack his team of Dr's met with us & asked dad if his heart stopped does he want to be resusitated, he wrote down YES... That evening mum was still at the hospital & I had left to go home, have a shower & something to eat, I called mum to check how things were & I could hear a woman yelling at my dad, I asked mum who she was & was told a Dr from ICU, I asked mum to put her on the phone, I asked who she was & why she was yelling at dad, she said she was the Head Dr from ICU & that she was telling dad that he will not be resusitated & that he is very tired & it was time he went to sleep & went to heaven. I hung the phone up & raced back to the hospital.On arrival I demanded to speak to this female Dr, when she arrived she had 2 security guards with her, we went into aprivate room, she had her guards & a male nurse with her for morale support, I asked her why she had the guards & she said that she knew I was angry & that she didn't know whaat to expect !!!! I asked her what right she had to go into my dads room & start yelling at him about something that had already been discussed, she said that he had been fighting this illness for 5 months & he is tired & someone has to tell him that it is time to stop fighting & go to heaven...I was so angry, I asked her why she thought she had the right to play god, also we had already had a meeting with dads Dr's & we had all made our choices clear.I asked what her position was & she said Head of ICU for the night, she also said thatICU is not to be used to sustain a life or give a chance to someone who will end up in a nursing home.I am appalled at this woman. I am in the process of putting in a formal complaint to Hunter Area Health. My dad is afraid to sleep in case he becomes ill & noone will treat him, we are afraid to leave dad alone fearing if he has another attack nothing will be done. I am so ANGRY !!!
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