[Closed] So my Dad's Terminal...

🙁

sorry to hear that dude

keep talking to your mum

thats shite, really sorry to hear that.

Having sadly very recent experience of something similar and one who also struggles with emotions, all I can say that I would have done differently is talk more with him early post diagnosis.

My Dad wasnt the most talkative at the best of times but after a while he shut down to some subjects (understandably) and I wish I had had some discussions before then.

Try to find somebody you can talk to outside of the immediate family circle, somebody who doesnt have the emotional connection with your Dad, who you can talk with about anything.

We were given timescales which were exceeded and I also know people who had the opposite so if possible try not to focus on what the doctors say, I dont mean that to sound bad against medics, but to be honest it must be hard to state times.

Just because you don’t show it, doesn’t mean you don’t feel it. One of the last things my mother said to me. It’s true btw (from one who tends not to show emotion).

Sorry for you terrible news. It’s awful.

Sorry to hear your news. I helped set up www.brainstrust.org.uk if you call us we may be able to help in some small way.

My step dad died of a brain tumour about 5 years ago, it was a tough time. Towards the end he just slept a lot, then just didn't wake up, I think that is pretty normal for bain tumours, apparently much more peaceful than other options such as the lung cancer that took my father when I was very young. If you want to vent or know anything else PM me.

Lost my dad to it when I was a kid.

As above just make sure your there, does your dad want to to anything any bucket list stuff. My other halfs dad died recently of lung cancer and he went very quiet and depressed and didn't want to do anything but I know people who go the other way.

Thats a kick in the stomach, feel for you mate. My friend died last montj from bone cancer and was happy to spend his ladt few weeks in the garden just sitting. My own dad died post op from a heart attack. It was tough st the time. Be aware of what everyone else is thinking and feeling, be sympathetic and go softly softly with everyone. See if you can get time off work, msybe go part time for the next 3 months. You will need some time with your dad, and family and time for yourself, now and in the future. Compassionate leave coves this.
Talk about funeral, will etc now as its possible he could not be 100% with it in the next few months. Esp if they give him lots of drugs, which can put you in a fog

Had exactly this with my Mum in 2008. Being told by the doctor (Dad, me and sister in a room as she was out of it on steroids) was like being hit by a train.

When she came round next day I had to tell my Mum that it was serious. She was in denial.

Mum died after 5 months with the radiotherapy. But looking back the quality of that time was massively impacted (paranoia, delusion, panic) by the side effects so on reflection maybe just going quickly would have been more humane. Impossible decision.

Thoughts are with you, it's a mare.

Sorry to hear that mate.
You have some time with him now. Many don't know that is the case so use it wisely for both of you.

Sorry to hear (all of) that

I don't do this stuff but I work with a few who do. There are quite a few decent online resources looking at end-of-life planning and expectations that you all might find helpful - your dad included. I'll ask for some recommendations and post them tomorrow.

Make some more good memories and try to send him off with no regrets

Talk to your Dad, lots. Our Mum is on her final weeks at the moment. We’re all laughing and sharing memories with her. She’s a few weeks beyond her last prognosis. Shout by pm if you just want to chat to someone going through the same.

Sorry to read that. Must be horrible knowing you have limited time with him.

Spend as much time as you can with him and get any preparations you can done now while he is around to make decisions. It's the two things I've missed while being in lockdown with my dad who is waiting to see if his cancer or just general old age gets him first.

Be there for your mum too, she'll need all the support you can give her too.

My mother had this earlier this year, you have my sympathy.

Sorry to hear that OP. Enjoy the time you have with him and let others sort their own crap out.

Is there any sort of checklist of "Shit I need to get sorted while he's still compos mentis"?

Will and POA are up to date, thanks to advice read on this forum.

Is there any sort of checklist of “Shit I need to get sorted while he’s still compos mentis”?

Bank stuff I suppose, will your mum to able to access all their accounts. Does she even know about them etc.

That's horrible. Enjoy having your Dad while he's still here and ask him everything you never asked before.

So sorry for you and your family.
Went through this two years ago with my mum, suddenly felt unwell, went to hospital and after a couple of days given terminal diagnosis of non-operable cancer, prognosis 4-6weeks. She died almost exactly 4 weeks later. After the initial shock spent the first couple of weeks talking and discussing so much. Take as much time as you can.

Bank stuff I suppose, will your mum to able to access all their accounts. Does she even know about them etc.

This. Mum and Dad had separate accounts, they were advised to set up joint account with her money as it makes things much easier. However Sainsbury’s Bank mucked it up and so wasn’t sorted before she died. Caused much distress.the POA ceases immediately so won’t help

My heartfelt sympathies doomanic, it's a truly horrible thing to happen. Went through the same thing with our mum just over four years ago, it's going to be brutally hard but the good bits shine brighter precisely because it is hard. Look after those around you but let them look after you as doing so can help them also. One day at a time, and don't dwell if things mess up, learn and stay in the now. Wishing you and your family all the strength and spirit you need for the months ahead.

Thanks to everyone for the messages of sympathy and support.

Sorry to hear this - my Mum died a few years back, and I still miss her. Make sure everything you can sort out now is done, and make the most of the time you have with him 🙁

Feel for you. Like others, been through something similar. It's hard ask for help and talk to people where you can. Take care of your mum.

Macmillan have some good resources.

You asked so I thought I'd do my best in terms of practical advice. It is very personal as to what planning you want and can do. It's a hard subject to tackle at a time when you are not in the best emotional state.

Things I did and wish I'd done.

Talk to your employer. I was lucky and they were understanding. Stressful situations/jobs/deadlines avoided and a bit of compassionate leave.

Talk to your dad about positive stuff. It's very easy just to get busy and doing things
Try to make some good memories. .

Sort out an end of life plan. Macmillan have advice. Find out what's going to happen and what people want. My dad didn't have a DNAR and we hadn't discussed if he wanted to be at home or in hospital.

Consider power of attorney for health and legal matters if responsibility will fall to you.

Get a will written. And get affairs in order. Banks and things are easy but having access to email accounts, passwords for computers and phones is helpful.

Funeral plans - any wishes? My dad left none but it was going to be a religious ceremony at his local church so that was easy.

That's shit news OP, sorry to hear.
Some good advice from jonba and others.
I'd also echo getting Power Of Attorney sorted sooner rather than later as it gets very costly if you have to go down the Court route.
All the best.

I hope you're doing OK, doomanic

I asked a colleague;
This is pretty much the first thing they show our trainees (5 min video) but also the "5 questions" referred to in the text

Hope it helps
(warning - video made me well up a bit, but I think in a good way)

https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/

I am so sorry.
I've lost both parents within the last 12 months and TBH your body might be tamping down emotions so you can crack on with dealing with stuff. It's more common than you think.

It may sound awful but once you've got an idea about what the specs are for the funeral, get quotes ahead of time. You don't want to get stuck in a panic with a funeral director you don't like or paying for stuff you don't want.

Take little videos of your Dad under the pretext that "he can say hi to X who can't go to see him".

Also if you have old photo albums where only he knows who is who, point the camera at the album and get him to go through it saying who is who and going through family history etc.

Remember you can't cure him but you can do lots of little things for him.

This may seem awful and it is, but it is a chance to say things that need saying, to have a chance to put things in order. My Dad went so quickly we never got that - merciful for him but hard for the rest of us.

I’m in a very similar position with my mum so we seem to have a mini club forming here 🙁

Re practical stuff; when my dad died 22 years ago, my mum was frozen out of many things that she thought were ‘joint’. The main bank account being the most stressful one. The account was listed as Mr and Mrs Bentandbroken. As the Mr was first and was the deceased she had to go to the bank with a death certificate before they would even talk to her. It then took a couple of days to get the bank to allow her access her own money. Very frustrating! Off the back of that, make sure your mum has an account all of her own with easy access to a slush fund to keep her going if required.

Other joys include getting letters to “Dear Mr Deceased” about 3 months later so keep and eye on your mum after the initial flurry of events has settled down.

In a similar vein, the anniversary of the death can be very painful for some. 22 years later I still try and distract her otherwise she can get very low.

I accompanied my parents to the the cancer centre at Coventry hospital today. As well as getting a mask fitted in preparation for the radiotherapy we had a sit down with a senior Nurse Practioner who certainly didn't beat around the bush when detailing what was happening and answering our questions.

He has inoperable Stage 4 Glioblastoma and the radiotherapy is palliative only and is expected to add weeks rather than months.

I'm currently OK with this. I've had a wobble but I'm over it now and I'm being the person my parents and my brothers need me to be; there'll be time for tears later.

Thanks to everyone who's posted, it has helped.

Sorry to read this. Some great advice here on the practcial side, work, money.

As others have said make sure you just set some time to have a chat with him as your Dad. Before I lost my Dad we managed to have a bitter shandy and a chat about life, football and just two grown men chewing the fat. I'll always be grateful for that.

Your brothers - they might be flakey, but they'll need time to get their head around this too. Think about broaching it with them. I'm much younger than my siblings even though I was in my 30's they still tried to 'manage' me on this. I would have preferred to be told straight out and had more time to address it.

Try to exercise and keep moving. Took me ages to physically get over it - riding the bike and weights helped my head and body so much with this.

I’m currently OK with this. I’ve had a wobble but I’m over it now and I’m being the person my parents and my brothers need me to be; there’ll be time for tears later.

From personal experience find non-family who can do the supportive bit when you need to vent, don't save up until after your dad dies it won't go well. I did this when my mum died just over 20 years ago, I took 7 years to have my breakdown.

Take care of yourself too and all the best to the rest of your family.

Yep, my advice is have a good cry as often as possible. I used to go out and scream into my visor when riding my motorbike, something about the concentration needed to ride allowed the other bit of my brain a release, still does years later.
Also and this is very much just take it or leave it advice, my old man found the radio therapy very hard, organising getting to hospital, walking around the hospital and the physical and mental effects of the treatment all added up to him saying **** it what's the point of adding a few weeks so he didn't bother. Maybe prepare yourself for this.

From personal experience find non-family who can do the supportive bit when you need to vent, don’t save up until after your dad dies it won’t go well.

Yeah, I do have a few friends who've offered shoulders to cry on, or faces to shout at, as required.

Also and this is very much just take it or leave it advice, my old man found the radio therapy very hard, organising getting to hospital, walking around the hospital and the physical and mental effects of the treatment all added up to him saying **** it what’s the point of adding a few weeks so he didn’t bother. Maybe prepare yourself for this.

Way ahead of you on that one. I'm under no illusion that this will be some movie miracle cure and I've already started priming my mother that it's got to be what's beat for him, not us.

Your brothers – they might be flakey, but they’ll need time to get their head around this too. Think about broaching it with them.

They've now been told. Middle brother is refusing to visit and has his la la la I'm not listening hat on. Experience tells me this won't get better any time soon. Younger brother has upped his alcohol and cannabis consumption, so at least the economy will bounce back...

doomanic - cold comfort I'm sure but my Mum is on week 6 of a 4 week prognosis and still going strong. We make sure we humanise her as much as we can. By this I mean not constantly focusing on the outcome or the illness or asking "how she is" but talking to her in a normal fashion and laughing about stuff. They don't want to see grief reflected back in their last days as it makes it all the more harder.

I'd let your brothers deal with it in their own way. Now's not the time for any extra family tension.

All the very best from us.

I imagine you've spoken to his GP, who should be able to give you lots of great advice.

With my mother who had a brain tumour, she got to a point where she needed two professional carers to look after her, one pretty much full-time, because she could not move, eat, or anything on her own. It's quite a drawn-out process, and generally pretty crap.

All the best to you and your family Doom. The one thing I wish I had after my father passing is video of him. Even if it's just him having a cup of tea and chatting get some video of him. I only have a few seconds of my father and I would pay to have even several minutes.

It’s been 6 weeks since the radiotherapy and no signs of any improvement. Up until now my mother has had virtually no assistance from the NHS or Marie Curie and she’s struggling to cope; she’s not strong or well enough to man-handle him when he needs it and he’s very unsteady on his feet. I’ve had to go round and pick him up off the floor several times in the past week at all times of the night and day. Yesterday he fell while I was at work so my mother called for an ambulance, they were astounded at the lack of assistance and called the district nurse. Today he’s gone into Myton Hospice to be assessed. I’m scared he isn’t going to come home.

The hospice is the right place. He may come home, he may not but certainly round here the hospice role has changed a lot from the place where you go to die to the place where you go to get your needs assessed when you have a terminal diagnosis. They should have good access to social workers etc who are the gateway to home services.

Does he want to be at home?

We were under the impression that he was going in for 24-48 hours but we’ve just been told it’s likely to be longer while they arrange all the care he needs.

He was most insistent, when he was coherent, that he be at home but he has the mental acuity and mobility of toddler now.

I am so, so sorry for what you’re going through Doomanic, I haven’t anything constructive to say, but I hope you and your family find some peace soon.

Hospices are brilliant places, we should have more of them funded by government.

I was worried when I saw the thread on first page that we would all be offering our condolences. So far so good, onwards and upwards. All the best to you all.

He was most insistent, when he was coherent, that he be at home

My view ( but of course its very easy to say from my seat) is that you should do everything you can to facilitate this

meds assessment should only take a day or two, District nurses can be mobilsed quickly as well. Getting equipment and home care organised can take a fair bit longer.

You might need to speak to the social worker. McMillian are good at offering support. If you / they have access to money( and its not cheap) you should be able to arrange private carers more quickly

Horrid situation to be in. all you can do is do the best you can for them and then to be content you have done your best. How much you can do varies with different people. when you have reached your limit you MUST be content with that no matter how much it leaves undone.

Its awful being "the strong one" in the family as it all falls on you. remember to take time to look after yourself as well and keep talking to your other half / friends

As above, the role of the hospice has changed. My mum has been in one for the last 7days and now they are talking about what happens next; home with help, home with a live in carer or a care home. This has caught her off guard emotionally as she thought she was going in to die.

I have been very impressed by everything the Hospice has done/said and have been equally impressed by the fact that they seem to go the extra mile a lot.

Sorry to hear that. It's devastating but just be strong for the family.
All the best.

He had a major seizure in the night. In line with his wishes we are going back to the hospice today to make arrangements to get him home as soon as possible.

****, good luck, I think I said months ago my step dad had similar. Luckily my mum was an ex macmillan nurse so help was on quick dial, it was still very very tough though.
Remember you need an outlet too, no doubt you feel the need to hold ut together for your mum but also take some time away mentally at least uf not physically. Talk to people.

Currently this is my outlet. My mum only has me to lean on as my brothers are proving to be worse than useless (as expected, TBH); one is in constant tears and the other won't take her calls.

I'm lucky in that I have a very supportive wife and equally supportive employer, but even so I can feel it piling up on me. I almost called in sick today anyway as I'm mentally drained and I've started comfort eating. I don't smoke and right now I can't drink in case I'm needed to drive so I'm hitting the carbs hard which isn't actually helping my state of mind.

So sorry to hear all this - there just isn't a good time for this kind of thing, but I can't imagine what it's like with everything else that's going on. Sending positive thoughts, for what it's worth.

I would say...

I almost called in sick today anyway

... don't be afraid to do that if you need it - gotta remember to look after yourself, too.

Currently this is my outlet

Well keep talking then, I'm isolating so here 24hrs a day!

If your employer understands, take a day off and ride your bike

It's sometimes hard to see, but advise like this

If your employer understands, take a day off and ride your bike

Is really good.

It can be hard to see when you are in the thick of it, but you can take some time off for yourself. Doesn't have to be long, but it can really help.

(NB I am in roughly the same position as you and struggle to do this, but even typing on here can be an outlet if it is helping)

I feel glad my mum was able to write her death plan before she lost her facilities and we were able to give her what she wanted.

So..

He was most insistent, when he was coherent, that he be at home

My view ( but of course its very easy to say from my seat) is that you should do everything you can to facilitate this

...I agree with TJ - you possibly can, make arrangements to make it so.

If your employer understands, take a day off and ride your bike

And this.

My concern is the toll it will take on my mother if he goes home without adequate support. The deterioration since even yesterday is marked and he is now completely unresponsive. She cannot care for him adequately without help.

Have a chat with the nurses and see if they can give an indication of how close the end is. Macmillan were spot on with my Dad. The hospice staff are now giving my mum weeks to short months. Knowing the rough timescale might help you make decisions.

It might also help to read up on the signs of the end of life. This one looks similar to the one I was given

My concern is the toll it will take on my mother if he goes home without adequate support. The deterioration since even yesterday is marked and he is now completely unresponsive. She cannot care for him adequately without help.

They shouldn't let him home unless they can source appropriate care - an assessment should be done so that it takes into account your mum's needs too.

Assuming he survives the night he’ll be going home in the morning. The support has been organised and a hospital bed is being delivered today. I know it’s what he said he wanted but I’m still not convinced it’s for the best. My mum is staying with him overnight so she’ll be fully aware of his condition.

Such an awful situation for you all with no right or wrong answer.
To add my experience, My wife was adamant that the hospice was the best place for her, mostly because it meant that i would have somewhere quiet and restful to sleep, she knew if she was at home i wouldn't be able to relax ( fat chance of that happening anyway!)
St Columba's in Edinburgh were immense and organised for her to go to the Day Hospice once or twice a week to give me a break, much needed.
only other piece of advice is be kind to yourself, if others offer to help, let them, use the supports. I'm a SW in scotland and know my way around the god awful system of care/support and the rest, so any professional advice just DM me.

I know it’s what he said he wanted but I’m still not convinced it’s for the best.

Maybe not, but any decision you can make at this point will have it's downside - please don't beat yourself up about it, you're doing the best you can in a deeply unpleasant and difficult situation and it's normal to have doubts about whether or not you're doing the right thing. (And FWIW I think taking him home isn't a bad decision: my Mum died at home and I think it was the right (or least worse) place for it to happen).

Dad died at 9:05 this morning. He didn’t make it home but he wouldn’t have known where he was anyway. I’m relieved because now my mother doesn’t have that as her final memory of him in their home together.

I’ve finally been able to fall apart too and it’s a great relief; I’ve had a cry and I feel much better for it.

I’ll be having a drink and a schmoke in his honour later and I’ll be clearing my head in the FoD tomorrow.

Tough day, sounds like you have a plan for yourself though. Take care!

Sorry for your loss and have a great day out in FoD.

As above.

🙁

Sorry to hear that, but well done for everything you have done for them both over the last few months.

It's no help to you now, but I have just been told my mum is going home from the hospice with 24 hour live in care. I was going to post that you could see what support your mum could get, but that is no longer relevant.

So sorry for your loss.

Bloody hard for your family and you. I can’t offer any practical advice, but take care and you are in my thoughts.

Sorry for your loss, take care of yourself and enjoy your ride tomorrow.

Dry sorry to hear that mate. Head out tomorrow and unwind as best you can. Keep talking here to everyone.

Sorry to hear of your loss.
If I was a trail in the FoD I'd be quaking at the thought of the shredding that will be inflicted! It's good to cry too, and now you can focus on supporting your mum, as it sounds like your siblings won't be.
Take care.
CD

Sorry for your loss. 😔

Sorry to hear that.
Don't worry too much about the comfort eating btw.

Sorry for your loss but you appear to have done a fantastic job dealing with a difficult situation. I can fully empathize with what you've been going through as my wife was diagnosed with non operable GBM tumour last year and given 6 months without treatment. Radiotherapy went well and 17 months later although we are now near the end of our journey with the help of local hospice Macmillan nurses she is still trying so hard to be positive. It is such a difficult time. You seem to have yourself organized but make sure you do take some timeout for yourself.
Socially distanced hug to you and your family.

Thanks everyone for all the kind words.

Very sorry for your loss. You've managed really well in a terrible situation, where there were no right answers.

Sounds like it was the best worst outcome in the end, tough times dude. Try and hold it together and enjoy a little 'me' time in the FOD . sometimes just sitting reflecting outdoors in the woods has a greater benefit than starring at 4 walls

Muke - a very sobering and succinct post . You have my utmost respect , that is some weight to bear

When my Dad died we were all a little bit relieved it was over, allow yourself to decompress a bit and don't feel guilty about enjoying a bike ride tomorrow, it's an intense and stressful time you've been through. You can start remembering and honouring the old boy now.

Doomaniac. You did the best you could and that is all anyone can ask. You were placed in a situation that is very difficult for anyone.

You can and must be content with what you did and I will bet my house your mother is very grateful for what you did.

What TJ said...

My condolences to you and the family. Enjoy the smoke and drink.

Doomaniac. My dad died in January earlier this year. Every night before going to sleep I give him a quick telephone call on my imaginary handset. We have a chat and I update him with everything that is going on. It probably bores him to tears but it helps me.

Sorry for your loss @andykirk and thanks for the good idea.

Doomaniac im sorry for your loss you have my condolences. It seems strange this is the first thread after flicking through today that stood out to me, as its my late fathers birthday today. He passed 2.5 years ago and like yourself we knew it was coming.
I wasn't very close to my father to be fair I couldn't wait to get out at 19 years old not that he was a bad father just me being an arrogant little know it all I guess.Even to the point when he went into hospital i knew he wasn't coming out I really didn't want to see him in that state unaware of his surroundings, I did man the F up and visit the hospital and just simply say I was proud of him even if i didn't show it, He passed a few hours after that and I take solace in the fact I think he was waiting for me.
My mother and sister still struggle when they are alone and know im always there for em that was my main focus , but the biggest advise I can offer is make sure you take time for yourself. A drink ,smoke or ride will help more than venting, crying or hating.

But again my condolences to you and your family.

Doomaniac so sorry for your loss, don't worry about not getting your dad back home, I remember getting our mum home for a few hours and it was a very undignified experience that I wouldn't want to put anyone through, hospices have all the facilities that homes mostly don't have. Hope your ride was good today, look after yourself.

I didn't get out today; held off for 24 hours so I could ride with some mates who know where I am right now, but I did go to the funeral parlour with my mum and youngest brother to say goodbye as a family as thanks to Covid restrictions we couldn't do it in the hospice and I'm very glad I did. They've done a fantastic job in making him look respectable and more like the man I've loved and respected my whole life. My final memory of him is now one of a man at peace with a wry smile on his face, looking just like the man in all the photographs we've been looking at today.