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. :(

Hi Nanny40 ,I am sorry about your Dad.mine was given a yr to live march 2015 with advanced prostate cancer.Life is cruel.

Thank you whatisforteamum, and how is your dad at the minute,and yourself, I went to the doctor today and got antidepressants cos I'm so emotional with it all xx

Hello. My mum - who was utterly fine in February, was looking at taking the kids away for the week on her own - is now in hospital with pancreatic cancer. She's jaundiced, suddenly diabetic, and has been told they'll try chemo but it may not work. Last night I visited her in hospital and we sat and cried at the idea that she might be dying. I am utterly lost; can't concentrate, can't believe this is happening.

May I join you? My sister has terminal cancer. She only got married to her DH in August and will be leaving her 20yr old autistic son and 18 yr old daughter. I am beyond heartbroken. I have 2 children, 5 and 2, and I hate that my youngest will probably not remember her. It's all so overwhelming. I feel like I am unable to stop thinking about it all and everything else seems so trivial.

Im a full time primary school teacher and am doing everything I should, but when we have yet another crappy staff meeting about the exact wording on a policy or even something important like Ofsted, there's a constant voice in my head saying "None of this matters!"

She's being so very calm and brave (though of course I don't know how she is at 3am) bless her. We have always been really close and I just feel so incredibly sad that we won't grow old together.

So sorry we are all in this boat together.
My dear mum was diagnosed with Acute Myeloid Leukaemia on March 25th.
She's had 1 10 day chemo round and is now on her second, she's very sick with it and starting to lose her fighting spirit.
I too am a full time Primary School teacher and am finding that from this perspective as long as my class are safe and happy everything else doesn't really matter (sign of burnout?)
At the hospital now letting mum have a sleep whilst I force down a sandwich in the cafe.
It's a strain because it's a 6 hour round trip to the hospital.

You poor thing Bumblecat. It must be so hard with her being so far away. I've got a 5 yr old and a 2 yr old and constantly feel torn between spending time with my sister and them. We've now got a bloomin' L.A. pretend Ofsted next week for 2 days.

Oh no poor you :( bsmirched- Im worried that my sheer lack of anxiety about work is going to come across as a bad attitude- I don't think Ive come across like that, I do really care about all the children but am also acutely aware that they're only 6 and not having amazing displays and laminated things really isn't going to affect their education too badly.

Hello, can I join you?
Sorry to hear you're all having such a tough time
My mum has had colon cancer with liver mets for 3 years.
Her treatment was stopped last Monday and she's deteriorating quite fast. I have no idea how long she's got, so don't know if I should take time off work to be with her.

She's currently mobile, but exhausted constantly. She's having difficulty getting in and out of the bath and can no longer do her housework (which is a big indicator that she's deteriorating)

I'm a lone parent to a 3 year old and have a constant knot of anxiety in my stomach since last week.
It's difficult to help her with an energetic young child running about the place...

I just needed somewhere to put this down. I'll be contacting our hospice at home service today to get her on their radar.
It's horrible isn't it?

I'm so sorry to read what you're going through prancingqueen yes it's horrible, my friend who's worked in hospices for years said that its really helpful for the dying person to know that their family are peaceful.
I hope your mum gets all the comfort she needs in this difficult time xx

Thank you bumbleclat
How is your mum doing? Do you live the 6 hour round trip from your mum? Or is she having treatment in a hospital that's a distance away?
Either way it's very hard.

Although I'm stressed up to the eyeballs, mum is close to me so I can call in regularly and help with practical stuff. Though it's tricky with work (I too am on auto pilot) and with a small DS.
Glad I've found this thread - there's some comfort in having a place to talk about it.
My friends are all great but have their own stuff going on, I don't want to burden them too much.

It must be so hard with a child, I don't know how you're doing it.

My mum's very tired she's on day 7/8 of very intensive dudes of chemo, they're trying to get her into remission so she can have a transplant but her kidneys are giving up somewhat and this has added further difficulty.

It really is the hardest thing in the world to see your mum suffer, sending you and your mum positive thoughts

May I also join?

Just found out conetely unexpectedly that my dad has advanced pancreatic cancer with secondaries in the liver with a prognosis of probably only a few months. He is only 60. I have two small DCs and live over 6 hours away without a car. DH away for months so am on my own.

Am in shock and also panicking about practicalities. My head on one level knows that somehow I will cope but at the same time I feel like I won't be able to.

to everyone.

Welcome to those who've newly found they are in this horrible and painful situation.

I'm a teacher and found it gruelling to keep planning, teaching, marking, coping with my class fully and then visiting Dad every day and just coming to terms with it all myself. It's hard. And I am part time so it's not as if I was doing a full week either.

I lost Dad in November and on one hand it seems that it was just yesterday, on the other hand it seems like it was years ago. This thread was a great support at the time and I hope it gives others the same support now.

Can I ask - how do you stay strong? When you're supporting someone who is very ill, has a poor prognosis, has the most god-awful treatment to live through, yet seems to be positive and optimistic all the time? I'm crumbling - and I'm the healthy one.

My sister has been living with brain tumours for almost two years now. Things accelerated quickly in the past 6 months, which meant surgery and 6 weeks radiotherapy. She's about to start 3 rounds of chemotherapy. So right now, we know that the second half of the year is going to as shit as the first half. And now it looks like we're talking more about survival than improvement.

I go to all the appointments with her (she has poor short term memory because of what's happening inside her head). I have to find a way to detach myself and be stronger to help her through this. Any ideas?

Same thread, Livin. :) Just a bit quiet of late.

It must have been frustrating for your Mum to be left untreated for a while. I know that the wait to get Dad signed up and through all the initial tests and scans to get on to his trial was irritating and worrying.

Dad was in and out of hospital with infections and that's also a worry, so I hope your Mum responds to treatments soon and that the tests don't throw up any other issues.

xx

to all on here.

To Olly I'm not sure there are any easy answers to you question, you can't help the way you feel and you have every right to be upset. So please be kind to yourself about it all.

Is is that you aren't managing to hide your emotions from your sister? Or your feel you are not coping well enough to help her?

For the latter, the only ideas I have are to make sure you get lots of rest /downtime, eat well etc etc. Find something you enjoy or that relaxes you (exercise? Hobby?) and do more of it if you can? What have you drawn on for strength in previous times of difficulty? Friends, partner?

If you feel you are too emotional in fron of your sister, I'm not sure what to suggest, it must be so hard. Best wishes X

Olly, I found it 'helpful' to give myself permission to completely lose it in private. Proper sobbing in a 'get it out of your system' kind of a way. Obviously, it doesn't get it out of your system as it's what you are living, but it meant I could save the getting upset for when it wasn't going to upset Dad.

What I found really difficult is trying to support someone who's having bad news after bad news. What do you say when there's no good news? How do you help that person feel better in some small way? I don't know.

We took every moment when we could and treated Dad to some nice meals out or visited and made memories. But there weren't that many times it could be done and, all too quickly, it was too late for that as things had moved on.

My sister, who'd been through cancer herself, would often ask Dad in a searching way 'How are you feeling?' and pressed him to talk about things. I'm sure it helped sometimes, but on other times you could tell that he just didn't want to talk about things. On the days he could carry on as normal then we would. A lot of the time we spend not actually addressing the elephant in the room as it would have made things too emotional.

So sorry to read all your stories.
May I join you please? My lovely Mum and best friend in the world has been diagnosed with colorectal cancer. How does one cope with this? No staging yet. The panic and sick feeling is horrendous. I don't know how to support everyone or to get by at all.
Best wishes to all.

I'm so sorry to hear of others in this situation. I have nc but posted above about my dad with pancreatic cancer. Today will be the last Father's Day I can speak to my dad and I'm finding it hard to comprehend it. We are seeing him soon so I had to tell my DC, my youngest is just little but my eldest at 4 did have some understanding and keeps mentioning it - like he too is trying to understand. I feel sad and scared about what lies ahead.

I also wanted to say thanks to charley for continuing to post, it's very kind to still offer support to others when you are in an equally difficult but different place.

Welcome, Twiglets. Sorry that you've had to find this thread and for what you and your Mum are going through. We never got staging info for Dad. No idea why. My sister had her staging info for her breast cancer as a matter of course (she's several years all clear now) but we never had that info for Dad's disease. Perhaps because it was already very advanced before it was identified.

It's a horrible, horrible thing to go through, supporting a loved one through it all. I remember the sick and helpless feeling well. There's help out there depending on if you can access it. Dad did get a lot of support from Macmillan and the local hospice so it's worth finding those numbers and contacting people. The hospice was not just for the final months/weeks etc. Our local one has a daycare type respite thing and that was a great help. They also offer, even now, counselling if Mum, we or even our kids need someone to talk to. My girls and I are signed up for the hospice's midnight walk next weekend to raise a bit of money for them.

Last fathers day was weird and unreal. In a way I'm glad I knew it was the last as I was able to appreciate it. Today, the first without him, was....sad.

Thanks for saying that, Dingding, I thought long and hard about whether to continue to post after the event as I started the thread when in a completely different position to now and didn't know whether to still comment or to bow out.

, as always, to all on this thread whether lurking or commenting. x

Charley, thank you so much for posting - I, too, am very grateful that you're here when your circumstances are different now. I'm so sorry to hear about your Dad, and I'm so sorry that you had to have fathers' day without him yesterday.
Thank you for the practical suggestions - greatly appreciated.

Dingding, yesterday must have been so tough. And I know it's so hard trying to balance things with your own kids (mine are also small - three boys, 2, 4, and 8 years old).

all round.

twiglets I'm so sorry to hear about your mum. You will still be in shock at the moment I'd imagine. A good friend said to me when I asked her how to get through this, that you just do somehow and that strangely it becomes your new normal. Somehow we will all get through this.

livin I'm really sorry to hear about your mum's diagnosis. I am also very far away from my dad and that does feel like it makes it even harder. I also am struggling a bit with my mum and sibling (who lives near) - they have always reacted to things very differently to me, and thought of me as uncaring as a result. I went up this weekend and already had some digs about how I react and was being and I felt very shut out. It's like it is ok to be unkind to me. I had booked somewhere to stay in the summer for a couple of weeks with the DC ( my DH is away the whole summer), but they have said as my dad is having palliative chemo they don't want me to go up with the kids. This means though that I have no way of seeing him. I am trying hard not to react as I know this isn't about me but I feel very hurt.

Sorry that was long and all about me.