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. :(

Hello all. My dear dad has been diagnosed with mesothelioma. It's an aggressive type and we are 1 month into a 6 month prognosis.

He's visiting at the mo (I live abroad) and he's tired and not half as active as I thought he'd be. Over Skype he'd been saying he was still the same as ever, but really he's not, he's deffo changed since we were back in the UK in August. He's a bit down too I think, which I understand, but also wish he could find some way to enjoy things whilst he still can. I'm worried that he's in more discomfort than he's letting on.

I'm fairly heartbroken about it all, but think I'm coping ok. Work keeps me busy, as do my two young dc and lovely dh (who bears the brunt of my sadness via my snapping at him).

The whole thing is just really really sad. My stepmum is heartbroken too, she has no children and moved to be with my dad (25 years ago) so isn't specially close geographically to her family. I don't know what will happen once dad is gone. I can't bear to think about it. It feels like things will unravel.

At the moment the whole concept of time stresses me out. I usually love autumn with all the changing of the leaves etc but it his year the passing of time seems so significant and, well, we haven't really got very much.

I posted in chat when this all first came up. I guess it will drop off after 3 months but if anyone needs more backstory, it's here

Massive love and hugs to you all having to go through similar sad times....

Hi Bon hugs to you as always ⚘
I know what you mean about Autumn. I've been feeling sad as dad and I would collect conkers (to keep spiders away!!) & go to garden centres and moan about the Xmas stuff in September and buy spring bulbs.
I just miss him so much & can't seem to get past that at the moment.
As you know, my dad had the same awful disease, he said he was never in pain but I think he was being brave, like dad's always are💕

Thanks jools. I'm sorry I haven't been so supportive to you since you had the funeral etc. I've been reading but haven't had too much time to post. And it feels somehow wrong to be talking/posting about dad whilst he's here.

That's so sweet that you and your dad did that stuff together. I'm sure the memories are painful but I hope they provide some comfort too. Hugs to you and your family.

bon don't be so silly! You have been so supportive and I don't mind at all hearing about your dad, I am pleased that you can spend some time with him. I feel bad talking about my dad as I know you have all that to face. Hopefully not for a good while yet tho. Please don't feel you need to stop talking about him, I honestly don't mind xx

Hi Bon I'm sorry about your Dads diagnosis. My Dad had an aggressive cancer and had far long than expected though the first few months we didn't know that would be the case so we did lots of "lasts". It is Dads funeral today which I was looking forward to seeing everyone but I'm struggling now tbh.
I know what you mean about wanting your Dad to enjoy his last months however just spending time with him will make lovely memories for you.
My guidejools I'm thinking of you.My Dad loved bulbs too so we are testing some to put in the grounds of the nursing home where he died.They had fantastic gardens and others would appreciate them next spring xx

whatis ⚘thinking about you today, I hope the funeral brings you some comfort.

Thank you myguide.
It was a perfect day.I woke up with a heavy heart dreading the day. My mum then asked for a lift to the crematorium so we arrived at hers and saw the hearse arrive with all our lovely flowers on Dads coffin.The 40 min journey was through lovely lanes and the sun shone.Leaves fell on the hearse like golden confetti.The service went quickly and was packed as we are a large family and many
People loved Dad too.
The wake was a private room with access to gardens and a river.I worked there for many years and the food was perfect.Everyone chatted and rifts were healed by some of us .Dad was a family man and to see his five children 12 grandkids 2 great grandkids together would have made him so happy.
I am awake now with some anxiety.everyone says I will feel worse now and I hope not as my boss is away for a few weeks and I don't want to let anyone down.
How are things with you now? Are you working and getting on with life OK.

whatis it sounds as tho your dad had a lovely send off. Your description of his journey through the autumn leaves sounds wonderful. I was so glad that my dad's hearse drove past my house and dads old school, it wasn't planned but seemed very fitting.
I'm still off work as I'm on annual leave but will go back after this. I have good and bad days, it's only 3 weeks since he died so very early days. Sometimes it just hits me that he's gone and I have a cry but it's not every day now. I think DS 20, is struggling. He doesn't say a lot but he's a bit down at the moment.
Hugs to you

what the way you describe it sounds lovely and dnice that there were so many meaningful features during the day.

Jools hope you're ok about returning to work. It is all so recent still, I expect it will be bumpy for you all for a while. This is the bit that saddens me the most, that it simply won't really get better.

Dad and I went for dinner just the two of us last night. It was lovely and we realized we haven't ever done that before. He got very breathless on the walk home and we had to keep stopping. We also both cried a lot. I think he feels like he's letting us down by leaving us :( He's meant to be going on another holiday 48 hours after he gets back to the UK from visiting us here. I'm really worried about how he'll cope with the flights, the airport, the drive to/from home as since he's been here he's really done very little. And to be honest, it feels like his appetite and energy levels and decreased even in the last week and his breathlessness has increased too. I don't know whether things will just be a steady decline or what? But if this is the pace he's deteriorating at it feels scary to think how he'll be in the next 3 weeks with a trip back to the UK and a holiday thrown in.

Oh bon I know exactly how you feel
Dad said he wasn't afraid to die but he hated the thought of leaving us all behind. When me and him were alone he would get me to reassure him that mum would be OK, it was heartbreaking..
It's so nice that you and your dad had a meal together and could cry openly, so good that he can speak to you.
Does he have any check ups coming up? My dad was breathless for a long time before he needed oxygen at home. He used to rest for a while then carry on. He did lose his appetite too and his weight plumetted.
It's all so shit. I feel for you⚘

I feel for you too as my Dad grabbed mums hand one night and said he was sorry he was leaving her.Another time he apologised for letting the family down!!! How on earth can our lovely Dads think this it is heartbreaking.
I spoke to the gp who put me on reduced hrs of 35 per week this month as I'm struggling now and I had 70 stretch ahead so not good.

Would it be ok if I tag along with you all?

Firstly, I'm sorry you've all found yourselves in this situation, it's so hard to deal with and so sad.

My lovely mum was diagnosed with stage 4 bowel cancer last week. She had an emergency operation 5 weeks ago which removed most of the mass which had spread to her ovary, but unfortunately they found it has spread to her lymph node and diaphragm and was also on the surface of the bowel so not fully operable. She'll start chemo when she's recovered enough from the op but we were told it would be to buy her more time as at this stage it would not be curable.

We lost my dear dad to mesothelioma in 2006 and I just feel like I'm living in a recurring nightmare. I'm broken at the prospect that my one year old may never remember his nanny and that once again I'm being robbed of a much loved parent. It all seems so unfair.

Sending strength and best wishes to you all.

jammiedodger I'm so sorry to hear you're having to join us, it's not the best club to be in!
I've just lost my dad to mesothelioma, 3 weeks ago. It's a horrible disease and not one I've heard of until 6 weeks ago!
It sucks that you now have to go through it all again with your mum. Words arnt enough really but you will get lots of support from the lovely people on this thread ⚘⚘

Hello everyone.

I am a long time lurker on MN and I feel quite sad that this is the thread that I decide to join in on.

My wonderful DF went into hospital 4 weeks ago. We thought it was just an infection, then he needed a stent, then it was stomach cancer but found early and now it's incurable cancer, fluid around the heart, fluid around the lungs and god knows what else.
They have said he is not strong enough for treatment so we are bringing him home today. Mum is going to reduce her hours at work to 10-2 so she can get him up and dressed then I can come straight from the school run and be there until she gets home and I can go do the school run again. I work for myself so god knows when I'll fit that in too, esp as the kids have 10 activities a week between the two of them but I have to be there for dad.
We met the palliative care nurse in hospital yesterday and she was a cow bag. She'd upset dad before I got there and then just casually dropped into conversation 'well, he's just as likely to drop down dead from a heart attack as die from the cancer'. Such a way with words.
They decided not to bother with a PET scan and have decided that based on his decline in the last few weeks he has months left. It's odd though as
Mum and I don't see such a decline. He's not in pain, hasn't lost weight. He's less mobile at the mo but he's been in bed for 4 weeks so he's weak.
It's so hard isn't it? I can't sleep and struggle to even breathe in bed at night which I'm guessing is all the anxiety. I've lost about 9 pounds in the last week which normally I'd be really chuffed with but at the minute my stomach is in such a constant knot I can only bear to eat when I feel I will faint otherwise.

Massive hugs to everyone going through this and to those that have recently lost loved ones. It really is crap isn't it.

Welcome frazzled to the club that nobody wants to be in
I'm sorry to hear about your dad, how old is he? I remember that constant anxiety/weight loss/insomnia, it sucks!
Especially hard for you if you work for yourself and sounds like you have young children.
All you can do is be there for your dad.
I had almost a month off before my dad died, I saw him in and out of hospital, took him for car rides, saw him every day, washed his hair etc and I'm so glad I took time out to be with him.
You need to do what feels right for you, it's hard and you have my sympathy ⚘

Thank you Jools for the welcome. Really sorry for your loss

Pa is 76. He seemed so young until recently really.
We've just got him home and I've been sorting all his pills out. Included was a page of his diagnosis notes which was too hard to read. It's also noted that they need to ask him about DNR which seems a horrible thing to ask someone who is feeling well. . I've stuffed the pages in my bag, if mum saw it she'd crumble. Hopefully they won't jump in with that.
Dad's next appointment is on my birthday, I'm sure there will be some lovely news again on that day, ugh

frazzled it's a horrible time. My dad was 73 & so good for his age up until this year. He refused walking sticks etc as they were for 'old people'
There are no words, look after yourself and try to eat little and often x

Thank you for the welcome Jools. I'm sorry to hear of your dads recent passing. I hadn't heard of mesothelioma either before my dads diagnosis. It's such a cruel disease and I still struggle with the fact that it never would have happened if fate hadn't put him on a certain job at a certain time.
Frazzled sorry you've found yourself here too. It's such a stressful time, I'm also struggling with caring for my mum as well as juggling my three DC's, the youngest being 15 months. It must be such a shock that everything has happened so quickly with your DF but it's good he's not in pain. Easier said than done but make sure you're looking after yourself too.

It must be so hard for you with such young children Jammy. I'm lucky as my two are 11 and 8 so they are at school and don't need me as much as littlies.
I really hope the chemo buys you lots of precious time. I really wish they were trying something with dad, I feel like we're giving up without trying.

I spoke to one of mum's best friends today and have asked her to try and have a day/ eve with mum soon. I'm really worried about her, she needs some time out from all of this. She's not coping at all at the minute and I can be strong for her but it's not enough.

Had a shower and the dregs of a bottle of red wine earlier. Hoping it might help me get some sleep.

New day tomorrow, sending strength to you all.

Another one joining a group that nobody wants to find themselves in. My dad has had a very difficult 12 months with 2 cancer diagnoses. He had a month long stay on ITU only to recover and get an even more devastating diagnosis which is now palliative. I'm in the difficult position of being an only child with 2 young children but I'm also working as a palliative care professional so feel that I should know what I'm doing. I feel hopeless and helpless and struggle to cope with supporting my mum who in turn is finding the situation of becoming a nurse to my dad impossible. It's a horrid time.

George - I am an only child too and this is exactly the kind of situation that always made me say I wouldn't consider only having one child if I could possibly help it. I crave a sibling so badly, someone else that is in exactly the same spot, feeling the same things and can help share everything at these difficult times.

I am now at my parents. Mum has gone to work and although dad has said he is going to get up, so far he hasn't. I don't want to push him but I worry if he's lying there awake what he is thinking about.

Hope everyone is having an ok day.

My DH has been very tired for the past few days. Never a good sign. :(

Oh Fuzzy, I hope he gets his energy back. Any change just brings everything crashing down in your head doesn't it?

Sending strength to you.

Love and strength to all ⚘⚘

Hello,

Sorry to intrude, but would you mind if I joined you? My Dad has been diagnosed with what is v v likely to be prostate cancer (PSA is 45) and he has symptoms of bone mets. He has had a bone scan today and is having an MRI tomorrow, biopsy to follow. We are in that horrible time of knowing, but not knowing and it feels unbearable. My mum doesn't know the severity of it, but I have a background in research (life sciences) and I feel I know too much. To top it all, I work with people with cancer day to day, so I feel I can't escape it.

How do you deal with the terror, the uncertainty and the doom? It feels like a huge black cloud has descended and that it will never shift. I am an only child, so no siblings to carry this load with. OH is supportive, but is also very practical and I need emotional support right now. I suffer quite baldy from anxiety and right now it is off the scale, so I am thinking of going to the GP and begging for some meds.

I am so sorry you are all going through this :(