The Past Few Months

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TheLongOne

Hello all I'd just like to start by saying I very much enjoy the conversation and debate on this forum so I've decided to go anonymous incase people wanted to cut me some slack on my main profile which I don't want of course. I'm not too sure what I fully expect out of this other than some understanding, a place to vent and maybe someone I can seek advice from who has been in a similar situation (question at bottom)

In mid September I had finished up a job with my father, we've both worked for our own carpet business for many years now and decided to go for our traditional afternoon Costa. Everything was going fine, I hopped in the van handed him his brew and started a conversation. After a bit I realised that his coffee cup was in his hand but the whole thing was just being poured onto the floor of the van. my mind of course went to he's having a stroke and I won't lie we both got ourselves into a bit of a panic so I just took him straight to the hospital.

It turned out he's had 3 embedded tumours in his brain which as I've been told can not be removed, this was a shock to us and not something I thought I'd have to deal with at 26. Fast forward to now and the situation has gone downhill so fast I worry I'm starting to lose control over the situation, I decided to stay with him 24/7 at home until recently when he's been having seizures so now he's found himself back in hospital. Yesterday I was told he's not allowed to make his own decisions and with my mum not in the picture it falls to me which will bring me onto my main cause for concern.

For a few weeks he has not been getting the medication and care he needed at hospital so the idea was put forward to send him to Trinity for palliative care not end of life. Unfortunately my dad has become quite unreasonable as one would expect and has decided they only send him to Trinity if they want him to die when the reality is he will have his own room, 24/7 care and access to medicine when he needs it.

He's not doing well in the hospital, he has fallen multiple times, problems with incontinence, seizures and he has now lost mobility in his legs due to where the tumour is pushing. Not to mention the oodles of issues I've faced with the staff (A sister told him he could go home for 2 hours on Christmas day when he couldn't)

I have made the decision to transfer him to trinity, I've been reassured it's what is best for him at this time and all he's doing at hospital is suffering but when I told him this morning he didn't react well. He told me he hated me and just was doing anything I could to avoid him getting home which isn't true and it has truly left me heartbroken and wondering if I did the right thing I know the tumours are making him irrational but I suppose what I'd really like to know is did I do the right thing?

Sorry for the wall of text, I've just really had this bottled up inside for a bit now.
 
If its OK Im not going to talk about your Dad but I am going to talk about you.

I went through a similar thing with my own Dad, albeit it was lung cancer with him. Ultimately his illness meant he ended up in St Catherines. Gladly we did have time to do stuff he really wanted to do before then, his favorite was 5 days at Trent Bridge watching a test match.

Anyway back to you and my reasons for saying that.

From your message it seems that you are very close to him as I was with my Dad, what I didnt realise was, just how close and how much I needed him in my life.

When he passed, initially I was so busy getting on with so many practical things that my mind and my emotions were literally pushed to one side, even after the funeral it was the same. I had mum and others to be strong for and I was.

However there was a time I could no longer be strong and I then experienced something that I'd never experienced before. My life literally fell apart and it was if I was watching decisions and actions i was taking from afar.

I dont need to go into details, and this isnt easy to admit, but I ended up in the Avondale Unit at RPH, everything i stood for worked for had literally fallen apart. It was a horrible 18 months of my life.

I recovered and, gladly, Ive never suffered this type of breakdown in the 35 years since.

So what Im saying to you is, take time for yourself, look after yourselfand, most importantly, if you feel you need to offload and can find nobody else then plase, please do PM me, your identity and things you say will 100% stay with me.

Please look after yourself and in a completely none selfish way, look after no. 1.
 
Bit of practical advice

Feel free not to confirm, but given they’re recommending Trinity for you is it fair to assume Dad is at the Vic rather than RPH? If so, have you spoken to anyone from the Palliative Care team and explained what has happened? I know from personal and recent experience, that you will be hard pushed to find a better, kinder and more personable team around and they will work very closely with Trinity.

Your Dad is possibly using you as the person to blame for his loss of control - not your fault, not his, just a horrendous situation - and therefore not listening to the very rational reasoning behind your decision making. So I wonder if the Palliative care team might be the people to come and explain the decision to your dad and what he can expect at Trinity, and whether he might be more responsive coming from a specialist team, rather than busy ward staff that have already given differing information.

Even if you don’t think it would be suitable for your dad, I implore you to speak to them yourself because the pressure on you at this time will be immense, and they may be able to offer you some support and advice

(Even if you’re at RPH, they will have palliative services, I’ve just never experienced them so can’t speak to their skill)
 
Yes, you have done the right thing. Don’t beat yourself up about the decisions you have made. You have made them absolutely in the best interests of Dad.
By all means, tell him he is going there to get stable because the hospital wasn’t doing things as well as they could and that once the new place has got everything under control, you will look at getting him home. Tell him he needs to fight the tumours and work hard with you as you are still partners as well as father and son.
Sometimes white lies are necessary and kinder than the whole truth in these circumstances.
As Raef says, it’s imperative you look after you. You’re doing great.
 
Reading that you’ve done everything seemingly that most people would do. What you feel is in the best interests of your Dad. There is always every chance that the person you decide on behalf of doesn’t agree. But that’s subjective the same as your decisions. You’ve done it from your position based on what you know and what you believe is for the best. I hope his remaining time is as comfortable as it can be and likewise make sure to look after yourself both now and in the future.
 
TheLongOne said:
Hello all I'd just like to start by saying I very much enjoy the conversation and debate on this forum so I've decided to go anonymous incase people wanted to cut me some slack on my main profile which I don't want of course. I'm not too sure what I fully expect out of this other than some understanding, a place to vent and maybe someone I can seek advice from who has been in a similar situation (question at bottom)

In mid September I had finished up a job with my father, we've both worked for our own carpet business for many years now and decided to go for our traditional afternoon Costa. Everything was going fine, I hopped in the van handed him his brew and started a conversation. After a bit I realised that his coffee cup was in his hand but the whole thing was just being poured onto the floor of the van. my mind of course went to he's having a stroke and I won't lie we both got ourselves into a bit of a panic so I just took him straight to the hospital.

It turned out he's had 3 embedded tumours in his brain which as I've been told can not be removed, this was a shock to us and not something I thought I'd have to deal with at 26. Fast forward to now and the situation has gone downhill so fast I worry I'm starting to lose control over the situation, I decided to stay with him 24/7 at home until recently when he's been having seizures so now he's found himself back in hospital. Yesterday I was told he's not allowed to make his own decisions and with my mum not in the picture it falls to me which will bring me onto my main cause for concern.

For a few weeks he has not been getting the medication and care he needed at hospital so the idea was put forward to send him to Trinity for palliative care not end of life. Unfortunately my dad has become quite unreasonable as one would expect and has decided they only send him to Trinity if they want him to die when the reality is he will have his own room, 24/7 care and access to medicine when he needs it.

He's not doing well in the hospital, he has fallen multiple times, problems with incontinence, seizures and he has now lost mobility in his legs due to where the tumour is pushing. Not to mention the oodles of issues I've faced with the staff (A sister told him he could go home for 2 hours on Christmas day when he couldn't)

I have made the decision to transfer him to trinity, I've been reassured it's what is best for him at this time and all he's doing at hospital is suffering but when I told him this morning he didn't react well. He told me he hated me and just was doing anything I could to avoid him getting home which isn't true and it has truly left me heartbroken and wondering if I did the right thing I know the tumours are making him irrational but I suppose what I'd really like to know is did I do the right thing?

Sorry for the wall of text, I've just really had this bottled up inside for a bit now.
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My thoughts are with you at this very difficult time….
 
Such a troubling time. From my understanding of the situation, you have done all you can to do what is best for your father. Please don't beat yourself up. There is very little in your control or his at this point, all you can is ensure he has access to the right support to help make this more manageable.

I hope that you are finding some time to switch off and relax where possible. It is important for you to take care of yourself too. Wishing you all the best mate.
 
This is an awful situation for any of you and your family to be in and I truly feel for you. Others have said this but you do need to find peace of mind with the decisions you're having to make. You're no medical expert and very likely not prepared in any way to be facing a situation like this with one of the most important people in your life.

Raefil nailed it by saying what the long term impact can be like. From my own experience, my old man had dementia. We were far from close due to him being an extremely unreasonable man. When dementia hit there was very little support from the family and it landed on me to make the decisions - that pressure really took a toll, leaving me a shell of a person for years later.

Somehow, you need to find a middle ground where you can assure yourself (to some extent) that it's not about getting the decisions right every time, but more about making the best decisions you feel you can with the knowledge and information you have to hand. OB1 is right in saying you need to find and hook up with the people who can help. For me, one lady at the Alzheimer's Society on Watling Street road became my crutch for a long time.

Unfortunately this situation won't go away and I'm guessing you're living and breathing it 24/7. That's extremely draining and that's where the above posts have said that you have to look after yourself, I absolutely agree with that advice.

Take care cha.
 
I'd like to thank each of you for your words and time, many of you have a point and I've certainly put myself on the backburner but I didn't actually realise how little I was really doing for myself although I did manage to get to Deepdale yesterday which did give me a solid hour or two where the situation didn't pop into my head. I'm sure I will also take you up on your offer, raefil. I apricate it thank you.

I've been invited to Trinity so I'm going to take the opportunity to speak to the staff and record a little video for my dad so I can show him they really do have the things he's been saying he wants for the past few weeks.

Once again thank you all, just reading your posts gives me a bit more assurance and confidence.
 
Howdo mate, I hope you are doing as well as can be expected. This is no doubt a difficult time, but I would have no doubt that you have done the right think. The staff at Trinity are amazing.
You must make sure you get some time for yourself, I am not sure if you are in Blackpool, due to mentioning Trinity, but if you need a coffee (or beer) and a chance just to speak and get stuff off your chest, feel free to PM me.
Illnesses in the head can make the patient say all sorts of stuff and be stubborn, please do not dwell on some of the things your father says, I remember my Mum saying some pretty horrid things to me when suffering from dementia.
All the very best and good luck
 
I have seen first hand how unreasonable some people can be when they have mental health issues….

A blood relative of mine had a very tough 2024 and was in the RPH, The Harbour and Elsie Finney House for 8 of the 12 months.

He was released at the end of August 2024 but sadly he has sunk back into a deep depression and he is very paranoid about everything, thinks people are watching and talking about him all the time.

Me and Mrs Ando have helped where we can and his 2 daughters are fabulous with him but he is never really grateful or thankful for all the things people do for him, instead focussing on the negatives…

He often talks about wanting to go to bed and not wake up, it is very sad to witness.

My point is @TheLongOne , don’t beat yourself up, your Dad is just lashing out and you are the nearest loved one that he takes it out on.

As others have said, you definitely need to take some “ me “ time and focus on your own health and well being.

Take care and look after yourself…
 
Hey guys, things progressed quite rapidly and I've been by his side at Trinity for a bit now and last night at half past 6 he passed peacefully in his sleep. I can not fault the staff there and any moment they weren't looking after my dad they were looking after me.

It's been a very rough ride but I've had the most amazing support and I have some of the best memories of the man who made me who I am. And of course thank you and the broader PNE Online family for the support and providing me with a place to spend some time and read about the things I enjoy.
 
TheLongOne said:
Hey guys, things progressed quite rapidly and I've been by his side at Trinity for a bit now and last night at half past 6 he passed peacefully in his sleep. I can not fault the staff there and any moment they weren't looking after my dad they were looking after me.

It's been a very rough ride but I've had the most amazing support and I have some of the best memories of the man who made me who I am. And of course thank you and the broader PNE Online family for the support and providing me with a place to spend some time and read about the things I enjoy.
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Very sorry to hear your sad news, condolences to all family and friends.

Make sure that you look after yourself and get the help you need 👍🏻👍🏻

There are some great people on this forum, please feel free to reach out to them through this thread…
 
Bloody hell that progressed rapidly.,so sorry for your loss mate, its a shocking and horrible time for you and your family and friends.
Pm any of us for private chat or advice.
Most on here have had similar experiences to yourself and can offer help and advice or just an outlet to sound off.
Take care. ❤️
 
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