Dad was a bit more settled yesterday, although breathing was weak and he is still taking the oxygen mask off. When I was out of the ward, he did ask mum to take her clothes off and get in bed with him!!!!!
Most of what he says is difficult to understand. I was supposed to be playing in a competition at another course today, but I pulled out - I was told my partner's wife did have a stand by. I would have had to have left the house by now as tee off was 8.50.
I was glad I did as I found out afterwards my dad's sister and my daughter are both coming - my aunt to stay with my mum for a few days, and my daughter from MK just for the day. I have to pick up my aunt, who is not in the best of health herself, from the station with my brother, then come home straight away by taxi once she arrives.
I just hope dad has had a good night's sleep as it will be good for him to see some different faces.
Another long day to.......
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I've not updated for a while. Basically, I feel worn out. Dad is hanging on and I think it is mainly because he still thinks he can get home and help mum.
We have agreed with the doctors not to replace his canula when it has to be taken out which will probably be later this afternoon. (Saturday). His arms are swollen now as well as his legs, so the only reason they will canulate again is if he has another nosebleed as they would try not to let him bleed to death.
Earlier this evening he had half a bowl of soup, some ice cream and coffee, which considering he was nbm on Sunday and Monday is a miracle. Although we have been told he only has days left, if he keeps battling away for mum and can take food and doesn't suffer another nose bleed, this could go on for a while yet.
He can really only breathe through his mouth due to the nose being blocked up to prevent the bleeding, and it is difficult to pick up what he says due to his weakness. He did flirt with the nurses earlier, mum and I missed that, but his sister was most amused!! He has also been entertained by by brother's girls over the last two days, which has helped my brother, who has done really well considering his mental health.
My younger daughter is coming up from the Smoke tomorrow, and dad will love hearing stories about her recent trip to NY, (she returned on Wednesday), and the elder daughter may also come up again.
Along with all the admin I'm trying to do for my mum, I am fast running out of steam. I have woken up after sleeping earlier, which explains the stupid time of this post. I haven't cried since I was a little lad, but I think that is about to change. Mum has been doing well but the strain is telling on her, and I fear for her health once dad goes. Seeing dad continually for the last 3/4 weeks is truly upsetting. He is too ill to be moved to a hospice or home. I am so full of admiration of him but it's becoming increasingly difficult to find the inner strength to........
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Sad to read of this Paul,
So much going on for you and your family to have to deal with all at once. Nothing I can do or say to make it better or easier but I hope you get some respite soon.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
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Paul
you have had so much to deal with so far this year I am not surprised you are tired and beginning to feel as though you are running out of steam.
Looking after one parent with needs is one thing, looking after two simultaneously is a really big challenge, physically and emotionally. Then add in your own issues as well and it is very easy to understand why you are finding it all a bit much.
It does sound as though your Dad is losing his battle but he is doing so with as much dignity as possible and with a family around him that love him dearly. He may not be able to say it but he will appreciate it more than you will ever know. Of course he will want you to be there to look out for his wife of so many years, your Mum. This lady who spent her life nursing and caring for others may just surprise you with her own fortitude. Yes she will need care and some assistance but the wheels should now be in motion to ensure that does not all come down to you.
I know that nothing I or anyone else might say will make you slow down and take some time to look after yourself, not right now. However when you feel the time is right you will stop and gather your own strength. One of the first things you will probably do is release all of the emotions that have been building up over the last year. You will cry, probably a lot and at the least little thing. There is nothing at all wrong with that. Those tears will be shed for all the sadness, hurt, anxieties and frustrations. Your wife and your family will be there to support you through that too.
Know that we are thinking of you Paul, the door to this house is always open.One of us will be here to give you the virtual hugs and any comfort that we can.
All the very best
xx
Mo
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Thinking of you all Paul, but especially you.
Cry your tears, there's nothing wrong with that, it merely shows you have a great capacity for love.
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Hi Paul,
I'm so sorry for the situation you find yourself in. Sometimes life doesn't seem fair. I hope they can make your dad as comfortable as possible. I'm praying for you both. Treasure all the years you've had together, I'm sure you have some wonderful memories. No one can take those from you. Makes you realise how precious life is and how we should all make the most of everyday.
Stay strong but don't be afraid to show your emotions (I cry all the time, it's nothing to be ashamed of, as Sandra says, it shows you really care).
Steve.
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Hi Paul
Shedding tears doesn't make you any less of a man. I guess you already know that . I read a post from Lyn Eyre the other day that just let a months worth go . On my own . But that was fine . Spend all the time you need with your dad . You will recover afterwards . So sorry
Chris and El
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I've felt much better today. I have alsoo visited twice, the 2nd time on my own this evening. He is hallucinating because of the drug regime, but although he seems to hear what we are saying, we cannot have a conversation as responses are virtually nil.
The staff are brilliant with him. This afternoon, I thought he could go any time soon, yet this evening I thought this could go on for some time yet. The staff understandably won't commit to a time scale.
So it's just a case of having to......
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Thinking about you Paul, you are being the best son a dad could want right now. Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Been again this afternoon. Dad is in the same room, but under the care of the palliative care team. He was much more subdued this afternoon, occasionally waking up and calling out. Occasionally, you can understand what he says, but the morphine has taken its toll.
So difficult when there's nothing you can do except try to......
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Nothing except be there and to care - just like you are doing.
I feel for you, having been where you are now.
It isn't easy.
Just do your best, it's all anybody could ask of you.
Thinking of you and wishing you all the best
We can't control the winds - but we can adjust our sails |
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Mum and my brother called on their way home after having dinner at our house. What a change. He recognised mum, gave her a kiss and had a good drink. We know it could all change quickly, but a lovely pick me up for mum.
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Times like that must be a real boost.
I hope your Dad has more of those good days.
I'm thinking of you
Paul
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Oh that's really lovely Paul.
Even if it doesn't last your mum (and your brother come to that) will have that happier memory
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My thoughts are with you Paul,
Fiona. x
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Paul
that is lovely to hear, those good days make the bad days a bit more bearable.
xx
Mo
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Dad was good, relatively speaking around lunchtime and pm, but more agitated this evening. However he was sleeping and more settled when I left him at 9.30 this evening.
The doctors said the prognosis was unchanged - we are still talking days. I am taking a bit of a risk in the morning as I am playing for the club in a seniors' competition around 20 miles away which should confirm us as the winners tomorrow. I should get to the hospital by 5.30 pm.
I do have lots I want to find out about my dad's treatment over the years.
I understand dad was first diagnosed in 1999 when he was 70, but the first I knew he had prostate cancer was around the same time I was diagnosed two years ago. Was he offered treatment, or watchful awaiting or active surveillance?
I can imagine him being told it wouldn't affect him to his mid 80's, and as his dad died at 77, and therefor believing he did not have to worry about it. He has always been good at sweeping things under the carpet health wise. A typical man of his generation!
Could there still have been an earlier intervention? How could we have avoided his current plight? What is offered now to men who are diagnosed in their 70s? Are policies different now?
I'd appreciate any comments on people with a similar experience.
Paul
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We have tried to ask questions about Stan's treatment but the consultant was able to hide behind a 'patient is dead therefore I can't get his consent to share this information with you' and we got no further which was disappointing as we made it clear we did not want to complain but to understand whether there was anything significant that might affect John. In particular, we wanted to know whether stan definitely had adenocarcinoma or whether there could have been some small cell in there.
On that basis, my advice would be - if you really want to know this stuff - to do some gentle questioning right now of his current care team rather than wait until later.
In my experience, there is often a brief spell of brightening and increased clarity before the person slips away from you again. You are in my thoughts my friend.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks, Lyn.
We are aware that there is often a better period just before the end. After 4 weeks, we have often thought it is just around the corner, but he keeps bouncing back.
Your comments on finding information are what I suspected. Hopefully I will have time to do some digging.
Paul
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Paul
I don't see it that you are taking a chance at all, you are getting a little bit of "you" time in and seeing out a season long commitment to your club. You have been there for your Dad and have told him all the things he needs to hear. If anything did happen then you rushing to try and get to him would not change anything. There is one thing I can say having seen many patients in end of life care. There is no set pattern but in almost every case the medical staff at the hospice have known. They observe signs that they are trained to see.
Mick was very lucid right up to the last 8 hours or so. On the Saturday we had three of our American cruising friends come up from Southampton having just completed the cruise we should have all taken together. They even brought him some KFC (disgusting I know but he loved it) He was excited that they were coming and asked me to dress him in a special T shirt, one which one of our visitors had bought him for Xmas. He sat and chatted with us all for hours and ate a good amount of his chicken too. He wanted to know all about the cruise and asked after some of the staff we knew on the ship. He wanted a photo taken with the Ladies which was a little unlike him,but I think he knew it would make them happy. I love that photo he has one lady either side hugging him and guess what he is smiling, a genuinely happpy smile not just a pose.
Then on the Sunday about 2pm he decided he wanted to talk with our friend Joy out in Georgia USA, so I called her, He chatted away with her for 30 mins or so. Then our next door neighbours popped in for a cuppa and to see Mick, he chatted with them until about 6pm. Then he ate a small meal every little bit of it. He went to sleep about 8pm and simply did not properly wake up again. He stirred a little about 6am and I called Karen because I thought she might want to say something, she talked to him and although he said nothing his facial expression showed that he knew it was her. I stayed with him holding his hand and talking to him until I realised his breathing had almost stopped. I called the hospice and Si at about 8 am. The hospice team arrived at 8.30 and pronounced Mick, then Si arrived about 5 mins later.
It was just as if he had known and wanted to say goodbye to some of the special people in his life and to some who he had not had the chance to see for a while. I drew a lot of comfort from that.
I hope that sharing this will help you when the time comes.
My very best wishes as always
xxx
Mo
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That's so thoughtful of you Mo and I'm sure will be a great comfort to Paul.
Paul, enjoy your golf.
You do deserve to finish what you started and I'm sue it's what your dad would want you to do.
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My club won the trophy (4 years on the bounce now!), and my partner and I had the best score on the day for a bottle of wine each despite us both messing up the final hole. Off for a shower and then to see dad.
Paul
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Fantastic news Paul , and lets face it you need a bottle each to be fair after a long day out . Well done you for taking some time for yourself. Our best wishes with you . Stay strong
Chris and Elaine
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Paul,
Sounds like your golf is the equivalent of the competitive obedience training and competing I have done with my dogs for years. Like your golf, I needed that to survive through Neil's illness and death, the dog training community of which I'm part and my wonderful dogs have given me something to live for over the last few years. Well done on your success, something to help de-stress from the situation with Mum and Dad. You are doing everything, they would be so proud of you. I am keeping you in my thoughts,
Fiona. x
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Well done Paul and partner. A well deserved win
Enjoy the wine when you get time.
Hope dad is still able to communicate when you get there
We can't control the winds - but we can adjust our sails |
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Originally Posted by: Online Community MemberPaul
It was just as if he had known and wanted to say goodbye to some of the special people in his life and to some who he had not had the chance to see for a while. I drew a lot of comfort from that.
I hope that sharing this will help you when the time comes.
My very best wishes as always
xxx
Mo
Stan was the opposite - he waited until John went off to a rugby match and the rest of us were out of the room on various errands. Devasating for all of us, particularly John, but as always Stan did things his way.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It' our worst nightmare that dad dies alone, but we realise these things can't be planned.
I was able to have a conversation with dad tonight in as much as I can understand what he is trying to say. One of the assistant nurses also said how she loved looking after him and how little trouble he is. I am sure he was also singing along to the songs that my brother has left playing continually on his phone. He always had music playing at home all day long.
His last words to me tonight were Thank You as I told him I'd be back with mum tomorrow. We have a doctor's appointment with her in the morning, so will visit dad after that.
He also hates anything touching his upper chest, and removes his NHS tunic. His chest is beginning to look raw which is down to the lack of platelets.
Still, it's been an emotional day, one I won't forget in a hurry.
It gives me the strength to...
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If it did happen that way Paul, I think you would have to accept that he perhaps chooses - I have a friend who is CEO of a hospice and he once told me that he has known patients hang on for days because the family never left their side. His view is that for some people, their worries for the loved ones they are leaving behind keep them here for longer than expected. For others like Mick and my mum, having people close by maybe eases their mind and allows them to let go. My friend also said there are those who seem to wait to be told it's okay to stop fighting, as if they need the reassurance that everything is in order.
My mum stopped speaking quite some time beforehand but she was still able to mouth along with her favoutrite songs which we had on loop. My nanna had totally lost the ability to communicate but on her last day, was able to join in with me on a couple of her favourite hymns - music is a wonderful thing which evokes powerful memories and brings calm and recognition.
Thinking of you all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I do tell my dad that we're looking after mum, and all is in order. I guess that as a family, we are with him on average between 4-6 hours per day. I honestly believe it is the thought of mum having to cope on her own that is keeping him going. I have never thought that people may choose to go alone or with the family. It's obviously come from a reliable experienced source. One thing is for certain, the human spirit is amazing.
Paul
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The end can't be far away now. We have not been able to converse with dad for 2 days. He is being given regular morphine and sedatives, but is still calling out due to spasms of pain. None of us can choose how we leave our mortal lives, but this is not pleasant to watch - to be the sufferer, it must be unbearable. I wouldn't be surprised if we get woken by a phone call tonight.
Whatever happens, for the family I have to be strong and....
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This will perhaps be a detail that some members would prefer not to know, in which case they should stop reading.
Paul, the human body is an amazing thing. It was explained to me (when I was in a situation similar to the one you currently find yourself in) that when someone is approaching the final stages, the brain stops sending signals to eat and drink. As a result, the person begins to dehydrate and this prompts the brain to produce a sort of natural painkiller. The body still behaves as if in pain, but the person doesn't know they are in pain because that part of the brain disconnects from the rest. So, as terrible as it is to witness, your dad's mind will not know that his body is feeling pain.
I hope that gives you some comfort - it certainly helped me when I needed it most x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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My thoughts are with you, I have been in your position with my mum "morphined" for weeks before finally losing her battle - I would not wish it on anyone.
Remember the good times.
Maureen x
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne |
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Sending lots of love
Louise x
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Paul
I hope Lyn's words will comfort you. I have heard the same explanation too. I was told that the mind is not in conflict with the body at all, in fact they are working with each other very carefully to ensure the least troubling departure.
It is hard for any of us to watch a loved one die, we stay with them, hold their hands, talk to them and offer any comfort that we can. That is all we know how to do.
My thoughts are with you and your family. Some may crticise me for saying this but I do hope this can soon be over for you all so that you can leave death behind you and start remembering life again.
Best wishes and a very big virtual hug from me
xx
Mo
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I don't know where to start but it's been a memorable 24 hours.
The elder daughter announced her engagement this weekend. Last week, I told dad a proposal was in the offing and he was able to say he was delighted which she was thrilled about.
I spent nearly all day with him but he chose to leave us at 2.00 am, 50 minutes ago. I raced to the hospital but it was too late. I'm sitting waiting for my Aunt to come. Mum didn't want to.
The emotions of life which is why I always try to....
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In our thoughts and in our prayers.....
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Your Dad is at peace now Paul and you gave him all you could. RIP.
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Deepest condolences to you and your family Paul.
Don't deny the diagnosis; try to defy the verdict |
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So sorry from us both . At peace now
Chris and Elaine
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Sorry to hear this Paul, but hopefully you can have some peace for yourself now. You did everything you possibly could and more
Arthur
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Thinking of you Paul. X
BFN
Julie
NEVER LAUGH AT A LIVE DRAGON |
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Hi Paul,
I'm so sorry to here about your dad. Treasure the wonderful memories you must have. He is at peace now.
Please send my love to your family.
I hope you're ok. Feel free to contact me anytime.
Steve
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Sending condolences to you and your family, Paul.
Love, Fiona.
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Please accept my sincere condolences on the loss of your dad.
You were a wonderful son to him.
My thoughts are with you and your family.
User
My condolences to you and your family. A brave fight from a brave man. Your care for him was exemplary and surely eased his passing in the knowledge your love and thoughts were with him.
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My sincere condolences go to you and your family Paul...
I went through a similar experience many years ago with my father
Luther
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I am so sorry Paul.
I only hope that if either myself or John are ever in the same situation, that our son will do for us what you have been doing for your mum and dad.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Paul
My sincere condolences to you and your family. Your Dad is now at peace.
You have been such a wonderful son to him and will continue to be for your Mum. I have the upmost respect for you.
My thoughts are with you
xx
Mo
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Paul, I have been following this thread with teary eyes (my Father slipped away earlier this year)!
Please accept my sincerest condolences.
I will pray that he rests in peace!
You have been a loving son, which is all any Father could ask for!
Look after yourself!
Pablito