A thread for those supporting relatives with life limiting diseases.

[CharleyDavidson]

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

Good and worrying. I completely understand that. I hope the 2 week regimen is kinder for your Dad and he can tolerate it better. Balancing the medial good and what's kind to the patient is so difficult.

We've been to visit Dad today. The specialist took us into an office and explained things in detail. The fact is, Dad's bowel has been completely taken over by the tumour that started growing in his urethra goodness knows when, before being discovered when it was already advanced.

They have also confirmed that the disease is in his bones and other parts of his pelvis.

There is no more active treatment they can give. They have removed his IVs and replaced his press-button pain relief with a syringe pump. He has been given permission to drink but has been told that occasionally that may make him sick. They said they will bend over backwards to make sure he's as comfortable as he can possibly be but are otherwise leaving him alone and not bothering him with obs and blood tests.

Currently, he seems more settled and in less pain, although he is still suffering from some colicky pain. It's less than it was and as he's able to drink he's not distressed and calm. He's a little muddled, but not like the other day.

They were clear that this is temporary and he will go downhill, but that they can't say exactly how he will progress. The consultant was talking about this in terms of how his 'hours or days' will be, so we have had confirmation that it is short term now.

My sister and I are going to come up with a bit of an action plan between us to sort out spaced out visits and the ward are wonderful as we can come and go as much as we like and when we like . I've messaged my boss (who cried today when I told her my news) and she has said not to go in tomorrow so I will spend a good amount of time with him tomorrow.

My girls are 14 and 11. I don't know if it was the right thing to do, but I've explained that their grandad is poorly, he won't get better, is a little bit confused and has a very bad stomach ache that sometimes makes him pull a face. And have asked them if they want a very short visit with him today (while he's still in a condition that's not too scary for them to see). I didn't want them to think that they wanted to visit him and weren't allowed to.

Who knows what to do? I don't!

Charleydavidson i cant imagine hearing that conversation but i guess hearing the truth gives you all time to visit and support your Dad.I rand mum from work as Dad had bad leg pain last night and she said the GP visited and the cancer in his spine is causing the back/leg pains so new meds and a blood transfusion tuesday,He doesnt want to go to hospital and get stuck in there.Transport is being arranged for the 40 min trip.I have no idea how quick his aggressive type of cancer will act now.
I agree your girls should visit otherwise they will feel excluded.My 2 are 16 and 18 so easier to explain too,

Charley your explanation to your daughters I am sure is the right thing to do, is a similar way to how I have explained to my daughters about their Grandad, and giving them the option to visit is a very good way.

Will be thinking of you and your family and I hope they can make your dad as comfortable as possible. x

Whatis I hope your Dads appointment goes well tomorrow

All these Dads in horrible situations .

Sounds like everyone is doing well for their children. We did the same when my MIL was dying. Our young teens visited while she could still gain pleasure from them being there and they could briefly communicate. They understood the severity of her condition beforehand. The night afterwards she needed heavier sedation and died without regaining consciousness within 2 days. We are all so glad the children got there in time.

My DC are young adults now and they travel home to visit Gramps every week.

Wishing you all whatever strength and support you need x

I'm so glad work let me leave early yesterdy to visit my Dad. (I'm a teacher and have my planning time on a Monday afternoon). I was able to visit with Dad while he was more alert than he had been up to that day since his hospital visit, and I was able to see that they had been able to make him more comfortable too.

Neither of my girls wanted to visit as they wanted to remember how they'd seen him on his birthday. So I went back (braving the thick fog) to visit last night. He was tired and less aware but we had a few words and I spent an hour with him on my own.

Today he's sleeping much more. They've discussed moving him to a hospice, but we are happy for him to be where he is as their care is superb and we don't think it's in his best interests to be moved. He was mumbling to Mum the other day that it was 'bloody awful' and I think he was talking about his situation. To me it came across that he's aware to some extent of how things are. He knows he has a blockage too, so has stopped stressing about 'what's going on?!' as he was always calmer when he was informed and had a treatment plan, however simple.

He's definitely less aware of what's going on, is answering the odd question with a mumble or a word or a gesture or expression on his face, but talking less and sleeping more.

It's heartbreaking to know I won't have another conversation with my funny, loving, gorgeous Dad who so many people remember fondly for his wit, warmth and good heart. I can't bear the thought of him going, but if this is how it's going to go: with him sleeping more and more then slipping away, then that's far better than seeing him in pain.

My boss has sorted out compassionate leave for me now so I don't have to worry about work and we are spending as much time as we can. I'm going back in a couple of hours with my sister to sit there, so he's aware that he can hear those who love around him, or a familiar face if he wakes briefly.

Tomorrow we will go in after dropping our girls off at school and see what difference the night has brought.

I hope everyone on this thread is coping as well as possible with the thoughts, decisions and emotions that this horrible situation brings.

so pleased you are on compassionate leave and i can understand your sadness at possibly not having another proper conversation with you Dad.I almost cant imagine it.
Hearing all the reports that dad looked frail and pale i popped in on the way to work.He did look visibly ill.but managed to walk with a wobble across the room.He said the gp felt a tumour on his spine.I also understand he has 26 pills to take.one of my sis friends to him a spliff and we had a giggle about him smoking it.Mum seemed to find it fascinating.I dont have a clue what he will be like in the next few days. love to everyone and their loved ones x

So pleased you have compassionate leave Charley so you get to spend these days with your Dad without the worry of work getting in the way xx

Pleased you got to see your Dad Whatis, did make me smile to think of your Dad having a spliff, did it help? Many people do have them for medicinal reasons.

Will be visiting my Dad on Saturday and see how is coping with this new regime.

Good luck with that Groovejet it is so hard all the gradual adjustments isnt it?

I remember that Dad has found that gradual changing of things really difficult. Every bit of bad news he got that limited him a bit more or was news of the disease having spread or a new symptom and he was floored emotionally. One day he said 'But when am I going to get any good news? It's always bad news.'

Groove, I hope the weekly changes are less traumatic for him and he can cope well with them.

Whatis, it's hard to see them being visibly ill. You can sort of forget what's going on sometimes when they still seem like themselves, but when they look ill it brings things home. Dad looked his worst post-chemo when he was scrawny and had lost his hair. Ironically, these last few weeks, despite his bowel problems, he's looked better than ever. But we did see him slowly retreating from things, spending most of the day in his chair, moving less and doing less. Although the weekend before he was poorly he went out on the Fri to lodge, had a family meal on the Saturday, then was out with his lodge friends again on the Monday despite having to cope with the discomfort of the size of his tumour and where it is.

He's actually gone downhill very rapidly this week. Last Tues night we thought he had (yet another) infection and there was the concern over his bloating. By the weekend we knew they were concerned about the possibility of any treatment. And on Mon we knew that we were down to 'hours and days'.

He's still here, Wed pm. The change in him is clear. We've spent another day with him and he's sleeping more and more. He will rouse and try and speak but can get out a few words, but not a full sentence. Today I took in my tablet with one of his favourite albums on - Dr Hook. :) He smiled when he heard it and even was able to mouth along to the words from time to time.

He looks confused a lot and is on a lot of morphine, so is mostly pain free but needing topups.

It's so very hard.

(And I'm hogging the thread, so thanks for bearing with me if you've been reading).

all. xxxx

Hope your dad is peaceful today Hex. My dad and Mum (2 years ago), even when very poorly, were at peace and not frustrated with their situation when heavily morphined up. Mum assured me she wasn't having upsetting hallucinations.

My dad is barely awake and coherent today, I think he needs a higher steroid dose. This is like he was back in September and steroids worked a miracle. The doc said then they could be increased in the future.

My life is a bit like groundhog day with dad's very set routine. It's a bit overwhelming but it is just him and me, everyone else is a visitor that needs hosting. Dad doesn't realise that we should/could be asking others to help, he says we don't need it. At least I have a cleaner coming twice a week now and she does all his laundry and bed changing as well as the usual house stuff. But I am so bored of cooking and eating traditional meat/fish, potato and veg meals served on the dot of midday. Dad keeps saying it's a good thing he is such an unfussy eater .

Take care everyone

I hope the steroids do their thing, nemno. You have a lot on your plate if you are dealing with it all on your own.

Dad's about the same today as last night. If he's talked to clearly by one of the nurses with simple instructions or questions he can manage a word or two to respond, but not always. He is on higher meds and is sleeping more. THere are still times where he's showing he's in pain. He rouses and looks like he's trying to talk, but either just his lips and eyes are moving like he's talking or his voice is just so quiet and indistinct that we can't pick up on what he is saying. Or he's just so muddled that it makes no sense. It's horrible to think that he might be frustrated or upset that he knows what he wants to say or have but we aren't picking up on it. All we can really do is look for signs that he's distressed or in pain and let the nurses know.

That is all you can do Hex and honestly I think that is ok. These days that you are living through are very tough and I hate to say, will be horribly in your memory for some time. It amazes me that nearly everyone we meet goes through these major events and yet we hardly talk about it, only on the most superficial level.

Yes, Dad and I are doing it alone. When he was given 4-6 months in Sept 14 I moved back to the old family house. My husband gave up his job and moved to us in Dec. He took 7 months off, of course we thought that would cover the critical time. He started work again in July. DH is a wonderful SiL and, other than me, he is the only one dad lets do anything for him but he works now, sometimes away and with a horrible commute. My other siblings are a major disappointment and as I said, if they do come they are visitors to be fed and entertained. Dad thinks anything else is surrender.

My heart goes out to you charleydavidson and nemno i cant imagine how hard it is to be the main carer.I agree lots of us will face this situation and yet death and dying are rarely discussed,

CharleyDavidson/hex - I forget what name I'm posting under.

It's hard but it's sort of a privilege to do it.
I have 2 siblings. One is great. A good friend as well as a sister. One is not so great. She lives with mum (and Dad) , neither of them drive so it's up to the 2 of us who can to cover all the appointments.

Mums dealing with it as well as possible but my sister has buried her head in the sand and has therefore had a big shock now things have progressed.

Weirdly, Dad seems more and alert today compared to the last couple of days.
He's a mason and one of his mason buddies just came to visit with him. Dad managed some short answer and smiles and put up his hand to shake his friend's hand.

Then his friend cried. It's so lovely to see how well thought of he is.

That's lovely Charley and yes my Dad can rouse himself for his one friend that visits. It gives him a real boost.

I could write a whole essay on self pity and anger at my own position so it is good to be reminded that it IS a privilege to care for Dad. I wouldn't rather be one of my uncaring and uninvolved siblings. So thank you for that. x

Hi. I'veonly read the last page of this thread and it's heartbreaking to read about what the end will be like.

My mum has RCC and the last possible drug treatment is no longer holding it back. We've been hoping that she could take part in some clinical trials, but so far she doesn't meet the criteria.

Would any of you mind letting me know how long your loved ones have had between the end of treatment and the point they're at now, please?

My mum lives alone, though she has a partner who's a retired nurse. I'm really conscious that she won't want him to do the more personal care that she'll need as things go on, and I want to be able to be there for her as much as I can. My problem is that I teach FT and can't afford to quit, and I have two young DCs ego don't get enough of me as it is

Charley, I see you've begun compassionate leave. I'm aware that it will vary according to LA, but what sort of terns can I expect? Sorry to ask such mercenary-sounding questions, but I don't feel I can talk about the practicalities of the end in RL.

Hi Jennifer. Thanks for joining the thread, hope it's not too scary to read.

I worry about the compassionate leave aspect. I'm not sure what policy my LA has, but I've read somewhere that it's down to the govs and then some LAs have a 12 day limit. I work 3.5 days so in theory I could have 3 and a bit weeks. But it's not been discussed and I don't know if it applies to where I work anyway.

If things drag on then I shall have to talk to my friendly GP and get signed off. I tried going in on the first day back after half term and just couldn't be there knowing that things were so bad.

I asked my lovely HT what I needed to do to sort out not having to be at work and she told me not to worry, she's sort it out with the govs and I should take all the time I need. Now it's been the full school week and he's still here, it is on my mind that this is not as quick as we initially expected it to be.

A quick timeline for my father would be....
Nov - kidney failure due to the blockage in urethra
Jan - blockage found to be cancer
Feb/Mar/Apr - chemo
May/Jun - chemo not working, 10 sessions of palliative radiotherapy started prognosis of 'months to a year' given.
Jun/July The day radio was finished, he had a break in his pelvis due to the disease
Oct - onset of bowel problems
Nov - complete malignant bowel obstruction diagnosed, hospitalised for end of life palliative care.

He was initially actually told 'months' in the meeting, but then the specialist quickly revised that with '...to a year' when my Dad got distressed.

He was right the first time. It's been 4 and a half months since the chemo was found to have been ineffective.

Hi Jennifer I'm sorry about your Mum.

I haven't got a useful timeline for you really because Dad's liver cancer (HCC) was found almost by chance when he was scanned for a cough that wouldn't go away. That was April 2014.

By the time we got a final diagnosis of terminal cancer it was August 14. He was given 4-6 months to live then (by the oncologist). He was given no treatment apart from a short go with the drug sorafenib which he immediately couldn't tolerate. In all this time he was symptom-free apart from a skin itch which had got worse over the prior 2 years and which dermatologists couldn't successfully treat.

In Sept 15 his cancer symptoms appeared; pain and fatigue.

And here we are over 14 months after diagnosis with probably a few weeks/ couple of months left. All his care is via the GP, his drugs are palliative and in no way treatment for his cancer.

Dad has been sleeping a lot and is very chilled, he is eating well though. He seems totally stoned which I think his current drug regimen is responsible for. I think the doc will change it when he visits Tue.

Hi Jennifer, sorry about your Mum.

The timeline for my Dad has been very quick but he his form of cancer is typically diagnosed in the very late stage, he went in for tests in June and was diagnosed with Mesothelioma (asbestos exposure) at the start of July, no treatment was available and his prognosis was a few months which sadly based on his recent decline does seem to be accurate.

Can't help about the compassionate leave, I work in a school but not as a teacher I have a feeling I am allowed 3 paid days and 2 unpaid, dreading having to deal with that as with the exception of a couple of people they are very unsympathetic.

Visited my Mum and Dad today, lovely to see them both but also depressing, I knew my dad has been a decline the past couple of weeks but it was a shock to see how frail he is since last time. He was pretty much out of it today so only got to see him in bed but managed to have a chat with him for a short while.

I am incredibly worried about my Mum she is feeling very depressed and feels as if she is letting him down, she used to be a nurse and she thinks that people expect her to do more but she can't force him to eat/drink/change positions in bed etc. Sadly my Dad refused to go into the hospice for 5 days respite care which she could really do with. I just feel useless in what I can do, all I could suggest to her, was that when the Macmillan nurse visits them was to be honest with her so they can suggest some kind of support maybe see if they could get my dad into the hospice as a day patient for a few consecutive days, I just wished I lived close enough by that I could go over on a daily basis.

Apologies for the self indulgent post just needed to be able to let it out, today has been a hard one, best wishes to you all xx

Hi regarding timelines mum was diagnosed late stage primary peritoneal cancer 2007 with yr to live and is still here despite a return in 2012 :) dad was given 2 yrs in 2012 as he has a rare cancer and is in the later months of his life now after going terminal and no treatment in march 2015,
Dad sounded ok today and says he is painfree after bad pain earlier in the week,Sadly wheelchair coming this week as my adopted sis house was in a drugs raid this week we all suspected she had married a dealer and she was arrested.Very hard for Mum who doesnt drink or smoke to take all this bad news in while dad is having a transfusion.I think understandably they are reeling.
Welcome jenifer sorry you are on this thread

Pleased that your dad is having a better day today Whatis, but sorry to hear about your sister xx

Not good news here.

Dad had seemed much more with it Fri, more alert, making more sense, and at lunch time today that seemed to still be the case.

By this evening though, when my sister and I visited him with his brother, he had declined. He seemed restless and wasn't able to communicate verbally though he did look like he could understand some of what was said. We stayed longer than normal and then let him rest.

The hospital called just before midnight to say he was deteriorating and we should get there. He passed away a few minutes after their call and he was at rest by the time we arrived. The staff were lovely and we 3 achieve had a few minutes in the room with him.

It still hasn't sunk in, but my wonderful, funny, loving dad has gone and I'm heartbroken.

So sorry Charley. It seems to be common that parent pass away after a family visit not during. It happened with both of mine too. I'm so pleased for you that you did see him last night and that he seemed to understand you were all there.