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. :(

Frazzled.... the kids sound amazing you must be so proud of them my dear ,
I have not told my one dd about dad , she has uni exams and I think its in her best interests to let her get over the exams first then tell her, we dont know a lot yet anyway everything is still so up in the air ! I have informed work and they are being difficult saying I need to give them 6 months notice for my pension to come through , honestly they are not helping any!
I am finishing in 2 months I will suck up no pay for 4 months as if any amount of money can make a difference now !
Take care of you and yours too my dear

Thank you - yes my boys may well drive me nuts at times but they are great kids and I'm very proud of them. Your employer sounds like a nightmare! I hope you get all that resolved soon and easily too. As you so rightly say, some things in life cannot have a price put on them.

I'm so tired tonight, so brief posting. I work the equivalent to one day a week, remotely from home. It is a God send of a job as I can fit itvround caring for my husband. I've also recently been awarded carers allowance which helps. I have no idea how anyone working longer hours copes at all.
Love to all.

Fuzzy am amazed how we all cope but we do and we seem to soak it all up like a sponge, your job sounds a Godsend and thankfully a little extra from the carers allowance the pittance that it is , I hope you are getting all the financial and practical help you are due , I think we are all doing a great job , Frazzled ....me and you Fuzzy lets keep it going my dears xx

Hello fuzzy and mrsmad, thank you for replies. My nana died yesterday morning, unbearably dad but at least she is no longer suffering. Going to see mum later with my boys - I think there will be lots of hugs and some tears too. Fuzzy it does sound like you've got a great employer and the addition of carers allowance must be a relief financially. It may be something that I look into depending on what the results of dad's tests are...

Hugs and to you both, and indeed to anyone reading this thread and feeling the need for a hand to hold x

Aw my dear Frazzled I am so sorry about your gran passing away , at the very best she is at peace now my dear hugs xxx
Hope you get good news soon, we are at our wits end here but life continues, work to go to, house to clean, shopping to do and hearts to be broken xxx

frazzled I am so sorry about the loss of your nan. I hope you can come to terms with it peacefully and that in time you'll remember all the happy memories you have of her.

My Dh has a Blue badge for disabled parking and that has made a great difference to us. It makes life so very much easier as he can only walk short distances with a stick.

Thank you. I was able to get mum up to see her at the beginning of the month which gave them the opportunity to say everything they wanted to whilst they were still able to. It was hard, but I think it has made things a little less raw - mum hadn't seen her mum for 6 years (they spoke regularly though) until then.

Been to see my folks today - mum is in shock I guess, can't believe that nana has gone, and worried about her dad (they'd been together nearly 70 years). She looks 'grey'..... and my Dad who is awaiting test results looks pretty rough if I'm honest. It was nice to see my boys make them both smile and laugh a little too.

Sorry to hear of your loss Frazzled, but glad for you that you visited your parents. I'm sure that must have brought them a lot of comfort.

I hope your dad's doing ok MrsMad and that you get some good times with him that bring him some joy amidst all the horribleness.

I've been thinking of you and your dh Fuzzy as the transplant approaches and wishing you strength and courage. I hope your dh is as good as he can be before he's admitted and that it will make all the difference to him. And I hope that you get some support in hospital and some time to look after yourself too. Keep breathing and keep going, you'll get through it. x

Thank you maddon. We went to the beach yesterday to breathe some good sea air. It's one of the things he is going to miss the most.

Thank you Maddon that is very kind of you,
I have been there most of today cleaning etc and being very practical , which I can do very well its much easier than facing up to reality....
I have booked tickets for Miss Saigon in December for them (mum and dad) to go to and they seemed very pleased , it gives them something to aim for I suppose....
I hope you both enjoyed the beach my dear Fuzzy it must have been very invigorating for you both good to get out in the fresh air for you both.
Frazzled thank God you took your mum to see your gran well done my dear .

Joining the thread; having been lurking since late Nov. My Mum's been diagnosed with cancerous nodules on her lungs, with indications pointing to breast (or maybe ovaries). More tests to come. Think I was in shock a bit yesterday. Today it's starting to sink in. One day at a time. Thanks for having this thread here.

Hi, can I join this group too please? (Hi Frazzled!)

DF was diagnosed with prostate cancer just before christmas, but had other symptoms we all knew didn't look good.

A couple of week ago after having the diagnosis of pancreatic cancer he was told he will probably have hopefully 6 months left as it has spread into the lining of his intestines and bowel. He has no option of surgery, palliative chemo would at best offer a few weeks extra time if any, and weighing up quality v quantity of time left he's declined to have this.

My dad is a young 69, worked all his life and dotes on his grandchildren. He's been very practical, sorting out finances and clearing out items relating to hobbies from the house, and it;s this and him physically changing, almost starting to waste away and losing energy I struggle with. He was wearing shorts today after nipping out and pointed at his legs and said how there was nothing there any more, like his arms, and that his shoulder blades jut out.

He says the pain is constant but managable under constant pain relief but wants to enquire about liquid morphine which tells me it's worse than what he's letting on.

I was helping them arrange his blue badge today, felt weird talking normally about him having terminal cancer. My mum was really upset today as they went away for a short break but he couldn't manage to walk far without having to stop and rest, and he's commented to my mum that he can feel his body changing.

DH has gone away for a coupleof nights with dc as he's off work for a few days and I'm working but also to give me break.

People are being so kind, a builder we've used is queue jumping my parents to get non essential work they'd like doing done straight away and has said if they need anything else he'll do it is a priority, but I hate, hate, hate the fact he's being so digified and practical while he is weakening and deteriorating what seems to be rapidly. My mum thinks he may pass way sooner which is even more upsetting.

The mancillan nurse saw him after his appointment at hospital, the district niurse is visiting the first time later this week, it's all becoming icreasingly real and upsetting

Hi Joyce! It sounds very much as though you've some fabulously supportive, kind and wonderful people around you. There's no way to escape or ignore the fact that the next few months will be difficult, and watching the illness take hold even more so :(. (A dear friend of mine also has this bastard illness - he's on orimorph, and also something to counter the sickness - he did opt for chemo to try and buy more time, but it's clearly a painful process).

Still waiting on consultant appt for my DF, hoping that gets sorted asap.

Sending you another hug, and one to all on the thread too.

H Frazzled, sorry to hear about your Nana, your parents must be so upset and worried about your dad too. I remember you mentioning your friend suffering from pancreatic cancer too, how is he doing?

Hope your dad gets his app very shortly as in a strange way you all have a clearer idea of what will happen. My dad has got a follow up one this week, even though he was sure what he wanted to do,it seems a follow up app with the consultant is routine to make sure people have had time to dwell on the info and their choices in case they change any of their decisions....

Lots of love and good luck to you all x

Thank you - last week was a hard one, the funeral was perfect for her, but that still doesn't make it any easier.....

My friend is still going through chemo, not seen him for a couple of weeks but need to catch up with him - he's got his family around him and I don't want to intrude particularly.

I would think Dad will get his appt pretty quickly, they've been on the ball with it all so far.

Love to you, and thank you for your kind words too especially when you're in the thick of it all as well x

Hi, I'm new to this thread, I was directed here by the lovely lacies.
My dad had throat cancer almost 3 years ago, he has regular check ups which have so far been fine.
Since then he's had heart surgery.(A year ago) Since the heart surgery he's become even more breathless, is losing weight and now has lung pain when breathing in. He's inflammatory markers are sky high.
He's had diuretics and antibiotics with no effect.
The Dr's are now talking lung cancer he's been fast tracked for xray/scan etc.
The poor man has been through enough, I'm just hoping and praying it's not the case.
what I don't understand is that he's had chest xrays during heart check ups so wouldn't they have noticed something then?
Sorry, I'm rambling. I just wanted to get it off my chest.
for everyone going through tough times.

Hi Joyce, and to everyone else on here with heavy hearts. My darling DF has terminal prostate cancer too as well as heart failure which are both now taking more and more of a hold. The doctor wants to talk about his prognosis next month when he next goes which makes us wonder why they've raised it as until now no-one had mentioned it at the hospital. To know his prognosis will be utterly devastating and my heart is already breaking for my DF, DM and the whole family. I don't want him to suffer but I can see him changing already, treatment options are fast running out. Life has always been terribly hard, I have 3 disabled DC and my parents have been my rock as I have been for them at difficult times. We are so very close. Each time I hear my DF's voice, I treasure it as I know I wont hear it forever. It's like a nightmare. My DC all pick up on the anxiety of the situation and I need to be strong for them but I feel so lonely, heartbroken and helpless in all this. Ive just spoken to my DF on the phone and he is being so brave. I fear that the days, weeks and months to come will see him slowly disappear through much suffering and, like all our loved ones written about on here, its so unfair and terrifying. My love and thoughts go out to you all.

Just found this thread. to everyone.

My beloved Mum has terminal cancer. My parents have always been so full of life that it is difficult to watch this happen. It is like watching the person you love slowly disappear.

I'm trying to pack a decade of lovely times into about a month.

ollyoscar you're thread made me cry, it's heartbreaking. I can't say anything to make it better but I just wanted you to know that someone is listening xx

Hi Lavender, I just PM you but forgive me as I have seen your post above mine on this message thread. My head is all over the place....I am sorry!!
It was actually your message that prompted me to post mine. Your words resonated so much with me and I feel that we may be walking similar paths in our heartbreak. We know that we are so helpless in these situations but it sounds as though we have a strong love and devotion to our darling dads. This love will hopefully sustain us in the weeks and months to come.

olly and for anyone else with a heavy heart tonight.

Hi Everyone
Love and strength to all. It's so very hard. Had some really bad days in the last fortnight, really struggling getting through an hour, nevermind the day.

I suppose we just have to cling on to the love we feel for our dear dear patients and get through for their sakes. Our pain is a measure of our love for them and inescapable if we love.

Hi Ollyoscar,

Dad had his follow up app with the consultant, still wishes not to have chemo as it will won't really make much difference re palliative care, however he wanted to up his pain relief and has been given morphone, it has really upset my mum, possibly my dad but, as ever, he is being practical and dignified.

I think my parents expected there to be a range of pain relief options before they got to the stage of morphine, but to be told so quickly it is what he should be taking has shocked us all a bit, and seems to be nudging my dad closer to the inevitable. He's clearing out more of his things and having work done to ensure my mum will be comfortable and self sufficient if that make sense after he's gone.

He's still driving, but very aware that when it isn't safe he will stop, but has got rid of his car and now uses my mums. Although he's still driving I found this has upset me and even though he wouldn't be driving more often if he had kept his car, while he had his own carit was a sign that he had full thriving independance, and no longer having his own car means all his world is shrinking that bit more.

I have bawled my eyes out loads this weekend and thinkI'll be doing it lots more

Big snotty hugs to you all

My mum is on morphine too. It is like watching sand trickling through an hourglass.