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. :(

I'm both glad and so sorry to see a few new names on the thread. Sad that we are all in the same situation, glad that there are people we can talk to about things without worrying about upsetting/annoying anyone.

All echoing the same: that it's so hard to do what we have no choice but to do.

I find that I'm sort of doing my grieving ahead of the game, then going back to a mostly normal way of thinking. We had the news of Dad's prognosis of months and I grieved. But he's still here. Still well enough in himself, although kept immensely busy with hospital appointments. Still being coaxed into doing stuff he enjoys. Tomorrow we are taking him out for lunch at a gastro-pub that he liked the sound of. I hope he enjoys it.

I'm sure that when he get's more ill it will be harder to forget that he's dying, but at the moment it's a strange thing. He looks better than he has in months, his hair has grown back and he isn't as frail. But I know it's only a temporary state and soon things will progress and we will feel as though the rug has been pulled from under our feet again.

, and to all those on this thread.

Can I just echo and and for everyone going through this.

I'm new to the thread, hope no one minds, but I am struggling tonight because my DDad has finally gone in to hospice today, this morning. Stage 4 prostate cancer, spread to lymph nodes, bones, kidneys and most recently bladder (we think). He stopped having any active treatment (chemo, radiation, hormone, ultrasound etc) well over a year ago. It is probably the right decision, I don't know. I thought he wanted to die at home and I am not sure that they (my parents) really did everything they could to help that happen. I do know he will be more comfortable on the palliative care ward because they will have better control over his pain meds. And him being at home was incredibly hard on my DMum. Fuck. I was not ready for this but a bed came available today and he decided to take it. I hate that a "bed becoming available" means another family's devastating loss.

Mum & Dad live in Canada, we live in London. Fortunately we are on our summer hols in Canada right now, currently with my PIL. DH and I are leaving the DC with them on Monday and driving to see my parents, 5 hours away (which is really quite close by Canadian standards).

He has been ill for so long, and declining so slowly, that this has really blindsided me. My PIL are being great and letting me not talk about it, not peppering me with questions and platitudes.

Heartstrumpdiamonds i am sorry about your dad he appears to have the same diagnosis as mine except dads is the small cell aggressive rare type.He was told about a yr this march as its in his kidneys bladder and spine now too however it sounded optimistic when he has hardly been eating and picking up infections week after week so your post have given me some hope tbh although we know cancer is different for every patient.
Welcome to the club no one wants to join but somehow here we are getting on with it

Hearts, I'm so sorry, there are no words when it comes to this. I hope it brings some comfort that you will get to see him.

So sorry to hear your news, Hearts. I think caring for people at home is enormously hard so even if it is not what your dad thought he wanted, it might be for the best anyway. Wishing you lots of strength.

My dad has had his second part of this chemo treatment cycle. After the steroids from the first part wore off he was feeling pretty sore and rubbish again, back on his crutches. But he's had a bit of a turn around again and says he is feeling better. The cancer in his pelvis appears to be hurting less so hoping the chemo is doing its job there.

It's hard being far away again. But my sister has gone to visit for a bit. That was a surprise for him, she lives overseas and we didn't say she was coming. Really cheered him up I think!

Hearts I am so sorry about your dad, hope your visit goes well.

That sounds like a lovely surprise for your Dad Lucy.

Visited my parents today, it gets harder with each visit seeing my dad that little bit more thinner and weaker and in more pain, with each visit.

His personality is starting to change, he is becoming very bad tempered, he has really lost his temper with my mum over things which is incredibly hard for her. We know it is just the illness and the pain he is in but my mum is finding it difficult to cope some days, she was looking exhausted this week has been a rough one for her.

My dd's are visiting my FiL in a weeks time, so I am going to take the opportunity to stay with my parents for a couple of days to help out and to take my mum out for a couple of hours.

Bit of a depressing post from me I am afraid, I think seeing my dad is when the reality of it all hits home the hardest.

Think some wine is in order tonight so I am going to enjoy a glass in the last of the days sun to you all x

Thank you everyone for your kind words.

whatisfortea I'm sorry about your dad too, infections can be scary.

Lucy and groove seeing the pain and the personality changes brought about by it is really tough isn't it. My dad's pain meds have made him so much more emotional than he ever was. He cries a lot. On the plus side, it has meant that we have been able to have lots of deep and meaningful conversations that I would never have been able to have with the 'old' him I have been able to say everything I wanted to say.

The last 2 weeks Dad has been a bit better and even went to the garden centre and down the river with Mum.Last week he felt ill and slept alot tbh i think there have been bugs about and my son and i felt off colour so maybe thats what it was.He doesnt eat much now which is odd as he had a big appettite before.I barely rang him for 2 weeks as it was my hols..time away from the worry and catching up with relatives and my dh as i dont normally see him that much through working.I must admit i didnt want to go back now i can see how much ive had to deal with its not easy juggling life with teens and worrying about our relatives is it?.I was just doing it all while dh has his own health worries.Love to all and i hope your week has been as good as it can be :).

This is crap isn't it??!! I wish I didn't have to write on here, I'm so sorry to everyone going thru this rubbish journey . My DP aged 49 got moved to a hospice last week, he has advanced bowel cancer with spread to liver and lungs and v poorly.
Today my daughter got accepted into uni doing a physics degree, so bloody proud of her, but I'm going to miss her like crazy, she is my little rock!!
My DP got diagnosed in Nov 2013, has had chemo, radio, colostomy op , bowel resection op , liver resection op, bowel blockage op and in January this year after all that, we got told the cancer is still there, and there is f* all they can do for him, apart from keep him comfortable. The hospice he is in are truly amazing, they are suggesting alternative things to make him feel better, and more comfortable, I'm just dreading the future right now!.. Feeling very sorry for myself with a large vodka in hand !! People around me think I'm being really strong and keep telling me how well I'm doing, I just feel like punching them, life is truly shite at the moment!! Sorry

Coasting I am so sorry about your DP. How old is he? That REALLY sucks. I mean, at least losing a parent, a parent dying before their children, is in the "natural order of things". Sounds like his treatment has been a nightmare on a treadmill. Poor you, poor DP, poor DD. But well done to DD about her physics degree - she must be a genius!

Whatisfortea I am glad you got a break - it is important to look after yourself as well - not least so you can stay strong for others.

It's great that your dad felt well enough to go to the garden centre and down the river (sounds lovely).

So my little update...

We are back with my inlaws after 4 days with my parents in Toronto. Saying goodbye to Dad yesterday was extremely difficult because it might well be the last time I see him. The doc told us that once mobility is lost (which it is) the person generally has 3 months or less. My Dad now has a morphine drip with a clicker so at least he will be as comfortable as possible.

DM is not coping well at all and I am worried about her being in "that big house" on her own. At least we have all the powers of attorney and wills and everything sorted, and I have everything set up so I can do all the finances and admin on 'tinterweb.

Back to London on Monday. I am dreading The Phone Call!!!

Sorry to be such a downer. It was so great to see my kids again yesterday, they really are a joy and a comfort (what a cliche ). They seem to be ok with everything so far.

Welcome, Coasting. :)

Hearts, that sounds difficult. for you for going through the difficult goodbye.

My old boss chose to work abroad and went knowing that her Dad was terminally ill but also knowing that he'd be dreadfully disappointed if she cancelled her opportunity just because he was ill. I don't know how she managed to do it. Your situation is different, but it reminded me of her for a moment.

My Dad's been having a few good days. His secondary tumour site seems ok and is being monitored since it sort of disappeared and he's enjoying being more comfortable and mobile - for now. He's gone back to driving now he can sit in his driving seat and it's brightened him up to feel that he can get out and about carefully. He's hating the idea of relying on anyone and of being stuck in the house. He's a very sociable man and the lack of human interaction with people outside the family has been a major low point for him recently.

We are dragging him out and about on a weekly basis and today we went out for breakfast - all 8 of us. (My Mum and Dad, my 2 sisters and our children) and had a lovely couple of hours together.

Living with the knowledge that someone you love is dying is horrible, but one upside is that you can choose to spend more time with them and don't take them for granted.

[flowers to all]

Charley thank you. I'm so pleased for your dad that he can drive again and get out and about.

oh coasting i am so sorry about your Dp.I agree the one "consolation" for me is that it is my parents that have been battling cancer and at least Mum has made old age as she was told she wouldnt.Hearts that is so difficult for you and im glad your dcs give you some joy.Charley that is great that your Dad can drive again what a difference that must make to his mood.Love to all and i hope the weekend is good for you x

Coasting so sorry to hear how things are right now. I'm in a similar boat but less far along. I think the drs are going to confirm this week that DH's tumour is inoperable and it's months. I hear you on the 'strong' comments and the 'coping so well'. I'm not and I'm not but there isn't a choice and I have to do everyday things but it's always there, gnawing away. Laughing isn't the same, nothing is the same. Literally everything changes and sometimes the sheer physical pain of it takes my breath away.
Congratulations on your DD getting into uni. That's a fantastic achievement. Will she be close distance wise to you?

I hadn't really posted on here because a little like what's been said, it feels different when it's your parent. And I'm no stranger to that as my dm has been diagnosed with Alzheimer's and that has been horrendous. But my 40yo DH diagnosis is truly unexpected and the horrificness and unfairness is unreal. Then again going through this without my mum being able to be herself and give me the support that you can only get or want from your mum is doubly hard.

Take care everyone on this horrible journey

It is hard with a parent but I cannot imagine how hard it is dealing with your partner dealing with this. Not when you would expect to still have decades together.

My dad is having his second round of chemo today. He had to have a blood test repeated as they weren't sure his initial results were good enough to allow the chemo. He says he is feeling fine though and did lots of walking yesterday.

It feels weird not being there to look after him. Hopefully he'll handle this round as well as he did the previous one.

hi everyone dads been ill again shivery and shaking so gp put him back on antbiotics which seem to have settled him.he has been sleeping alot.He decided to have a bit of a go about my dd not going to college (we were cross too).Then started saying i should move away from my dh of 28 ys if im not happy and leave my job (which i happen to agree and i have job trial sat.He sounded disappointed in my life married 2 kids and our own home as we dont earn much so work a fair few hrs (who doesnt).We have a quiet life and that isnt good enough for him sadly..maybe its his cancer talking.Anyway i hope youve all had a better week. :)

Sorry to hear things have been rough whatis. As to things they say, it's bound to hurt regardless whether it's the cancer or the drugs causing the inhibition. It feels that this must be what they actually think and it's the filters to spare your feelings that have been removed.

My dad was given such a short time to live that I never pulled him up on stuff that upset me. Now 1 year later it is getting wearing. I'm all he has, I just can't be mean. He'd be really upset if he realised he upsets me often.

Hi Nemno im sorry about your df too.Dad was ok when i saw him today he realised i have alot on my plate with a bad tempered dh and his slipped disc problems.What with teen exam results and my dd getting a part time job i am flat out.I told him he had never told me he loved me then hugged him and told him i loved him anyway :) I am sure it is common for people who are terminally ill and worried and in any pain or feeling exhausted to vent and i copped it!It is just sad when someone tears your life apart when you are doing your best.

Coasting and Finding I am so sorry to hear about your partners.

Whatis sorry to hear things have been so rough lately, it is bound to hurt even if you know it is the cancer/drugs talking. How did your job trial go?

I spent a few days visiting my parents, did my mum some good we managed to go out for a meal and she got slightly tipsy, was nice to see her being relaxed.

Sadly not been so good before my visit for my dad, he had a bit of a scare when the district nurse was out to do his drain and had to be rushed to hospital, turned out to be nothing major considering his situation, and his pain meds have been increased. The chest drains are getting more painful to the point where he said he would rather be dead now then go through any more of them :(

Oh i am so sorry Groovejet that is so sad for your dear Dad and for you and your Mum to hear.Mum had her chest drained once and her lung collapsed all these awful things happen dont they/.So glad you took your mum out and she relaxed from her daily worries which is what worries me about my mum as she stopped driving when she got cancer so if dads ill she is at home.
The job trial went well thanks subject to the chef and manager deciding on pay etc as they both said different things ha ha.I didnt think i needed more stress while dad is ill now i think i need a change of scene and have savings just in case.I sincerely hope your dad has a better week.

Hello, please can I join you?

My df is terminally Ill given a year to live in June and I don't know if I am coping very well. I am on the verge of tears everyday with periods of ok in-between.

We have a totally useless oncology team at our local hospital and dads gp agreed too. He is in the process of transferring to a larger and better hospital.

I don't know if I am normal to feel so utterly distraught.

to everyone and your family too.

Dontbesilly I am sorry to hear your news.

I think I found the months of diagnosis the most upsetting. I am sorry the medical team has not been great, that too is not uncommon. With us the people themselves were fine it was just the delays and inefficiencies of the system.

The prognosis for my dad was totally wrong, he was given a few months but is still going strong over a year later. He hasn't been to the hospital at all for a year now, his GP manages his symptoms and I am his sole support. We have our ups and downs and it can be very hard but that initial upset that means constantly bursting into tears, has passed.

All the best to everyone on this thread