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. :(

Livin, I'm so sorry you and your mum are facing this. I wish I could offer some wisdom. I have a constant feeling of "How on earth do people DO this?" (and so many people, so often!) at the moment. I wish I knew answers for all of us here. Maybe there are none.

Ding, I think it's so hard when you respond differently to your siblings, and so hard not to feel angry with each other at times. You can only know what's right for you, though. And, ultimately, what's right for you is the best way you can deal with it for your dad, too.

Hope today is a good day for you, Charley.

Thinking of you all

Oh all these feelings, coming in their awful sickening waves

Livin, I saw your news about your Mum's news on another thread and wondered if you'd be posting on here. It's very hard to look at someone struggling and be caught between wanting every day you can with them and yet not wanting them to have to go through so much. Have you got easy ways of being in contact with her when you can't be there while she's still well enough to use them? Also, if she's in hospital have they said what they are treating/not treating? Macmillan, when we had them involved when we finally needed them, we all about treating any and all symptoms that would help Dad feel more comfortable, even when the doctors had said that all treatments were being withdrawn due to not being of any use to persue. The Macmillan nurses working out of the hospital were the ones that got a temporary drip to alleviate Dad's dehydration and to make him more comfy, for example. They were great to be able to talk to about things as well, when we did visit. Sometimes far easier to get hold of than the consultants too.

I'm sorry that there's a short prognosis. It makes things so very real, especially when you start to see other symptoms too. Obviously it's a best guess. I have read of many people who have outlasted by a long stretch, and others who didn't manage to see out their prognosis. Dad's was right on the money as it were. Months they said, and months he had.

Dingding... I can completely understand why you would feel hurt by that reaction. It's hard, but sometimes we need to just say 'stuff it' to other people's expectations and grow a harder skin really. I think Twiglet is right and you need to do what you feel is right for you. And for your Dad. Is he at home and having chemo as an outpatient? My sister and my Dad after a while could both predict the pattern to their side effects and we knew when we could visit and when not to, perhaps he can advise you on whether he would like you to visit and when is best.

(Oh, and this thread is supposed to be a place where you can be It's all about me without judgement. )

Thanks for the lovely messages too. I still, 7 months on, cry most days and think of Dad lots. But it is easier than it was initially.

We scattered Dad's ashes here at half term. A beautiful place that meant a lot to him.

Charley, what a beautiful place for your Dad's ashes.

Just feebly joining in as don't think I really fit - but MIL finally diagnosed with grade 4 GBM brain tumour yesterday and given approx 12 months and only treatment offered radiotherapy. DH only child and DMIL husband (DSFIL?) has started drinking after 20 years of being dry - they both drunkenly (and stoned) rang DM last night to rant and go on about how much money we will get out of them :( at 11pm

So, am going to need somewhere to vent as whilst I can cope with the practicalities of treatment/care etc this side is somewhat harder, especially shielding the kids as her inhibitions are going awry

So hello, and to all

Welcome.

Vent away!

charley thank you for your wise words. The place where you scattered your dad's ashes looks beautiful. My dad loves walking and was quite a serious walker before this, so I hope we find somewhere like that for him.

camembertie hello and sorry to hear about the extra difficulties you have. I have a number of alcoholics in my family so have some understanding of the destruction that can be caused, even when you feel sympathy for them at the same time. It is very tough.

twiglets and livin

I managed to see my dad for an extra day with my DC. It was bittersweet - some lovely memories but possibly the last time they see him as himself or maybe even at all. He is already deteriorating very quickly. And they are too young to even really remember him.

DS10 was very upset about Granny last night so I explained that by the time she dies she will be a very different Granny to the one he knows now and that we will actually be relieved as she will have been suffering so much that it will be some peace for her. Is it wrong to go into detail? I just totally accept that he is sad to lose Granny as she is but he will really lose Granny long before she dies.

Off to google recommend materials for kids, younger ones are far more matter of fact and for today granny is fine which is a far better way of looking at it - whereas I'm already making contingency plans to move so we don't inherit DMILH (DSFIL?) as he has no other family

Macmillan have a good range of leaflets about end of life care, telling children the news, dealing with things afterwards. We were able to drop into the Macmillan dept at the hospital and the lady there gave us them. Lots are available online too.

Thank you, DH is accompanying DMIL to her appt this week and seeing Macmillan so can hopefully pick things up then

Hello everyone

Just wondering how everyone is doing? Been a long day at work and the kids won't go to be so I am very tired. Hope everyone is finding a way through this

Hi Dingdong, I hope you got the kids to bed OK in the end, and got some rest. Glad you got that extra day with your dad, and made some lovely memories. How are things now?

Camembertie, I'm sorry you and your DH are facing this too.

Livin, I'm thinking of you and your mum.

Charley, I just looked again at the photo you posted of where your dad's ashes are. It's so lovely. Do you get to go to the place very often?

Still a lot of uncertainty here. I think I've gone into a sort of denial, which is good in that it's allowing me to eat and sleep again, but is scary because I know at some point it's going to hit again.

That sounds so hard, livin. Thinking of you.

Thinking of all of you who are still going through this horrible situation.

Twiglets, we go back to that place every year. It's the cliffs off a holiday park where we were taken every year as kids. Mum and Dad caravanned and met with the same people every summer so they had their friends and we always played with the same friends every year too.

Livin, try to make sure you find some time to look after yourself while you are also looking after your Mum. xx
It's a beautiful place. Very calm. He used to walk the dog in the fields at the top of the cliffs, used to take me out mackerel fishing with a local fisherman in the waters there, and used to climb down those rocks and fish off there with us when we were little. His ashes are interred in the local cemetery, but it gives me a happy feeling to know that part of him is out there in the deep blue sea.

Just to say thinking of everyone this evening, I always find weekends the hardest ( on my own with the kids and doing things that remind me of my dad )

charley it sounds such a lovely place, with what sounds like very happy memories for you. Thank you again for your continuing support

Terrible that so many people are going through this cruel dreadful disease,but I think the people on here are the ones that really understand how awful it is for us all to be in this situation,to watch a loved one suffer.
I don't know how long my dad has left but see him gradually getting worse every few days when I see him,he has lost all his mobility,hardly eats& sleeps all day,only waking him to give him his medication.which is having bother swallowing. So so hard, my heart goes out to each& everyone of you that is in this situation xx

Prayers, and vibes to all, reading through the thread it just sounds so relentless. So crap there's no caters leave like there is mat/paternity leave.

Livin I really hope you manage to find some peace and energy somewhere

Charley sounds like a really lovely spot that represents some wonderful times with your dad

40nanny this must be do hard for you, sounds like he is not in pain though

Ding I hope things are a bit easier for you now

Hope everyone has a calm and strength filled rest of week

Just sending out support and thoughts to everyone this evening

Thinking of you all

So sorry to read some of the posts on here

My grandad (more like my dad) was diagnosed in march with 3 primary cancers. Colon, renal and prostate. The prostate was under control with hormones and he was booked for curative surgery mid june to remove the kidney and part of the large bowel. Sadly he deriorated and became unwell with sepsis prior to surgery. It was decided he was not well enough to withstand the op. A further ct has shown the cancer has grown significantly, far quicker than anyone expected :-( 2 days after the surgery should have taken place we were told it was to be palliative care only. The decline has been frightening tbh, he has gone from being very fit (12 mile walks over the moors!) to struggling with walking 5 foot with a zimmer. My heart breaks for him. He is so emotionally withdrawn.

We are providing care at home with support of carers, gp, district nurses, marie curie and macmillan. My gran is being very stoical although is clearly heartbroken. Myself, my mum and my aunt are taking turns in staying overnight to help with cares.

Thanks for all the support from all you lovely people on here & sorry ENormaSnob you've had to join us, and March is no time at all for your grandad,It's terrible watching someone so fit deteriorating. My dad exact same but now bedridden,has a chest infection on top of it all. He has the just in case medicine box in now & DNR in place.i saw him yesterday & the rapid pace he is going downhill is terryifieing .His eyes were all glazed yesterday& he's that weak you can't hear what he's saying now, Where as I could on Monday,It's hard to stay strong.😢The Marie Curie nurse is in place for next week.
Hugs to all of you, I wish it wasn't happening to us all.

Goodness Norma. What a rapid and shocking series of events. It's so hard watching someone who is normally fit and well struggling with everyday activities. Supporting them with adjustments that need to be made to cope with the physical difficulties are hard, but I still don't comprehend how you can truly support someone mentally when they have the news that they are only being treated palliatively.

Nanny, thoughts are with you watching your Dad deteriorate. Even when my Dad couldn't talk to us (as a result of infection and his general state of being unwell) he could still smile if we spoke to him. He enjoyed it when we brought his favourite music to his room and it was lovely to see one morning that the nurses had put one of his country and western cds in and were singing along to it and talking to him while they sorted it out.

Thoughts for you both, and all others on here.