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. :(

[stressedoutnfedup]

i'm trying to support dp with cancer and same prognosis as your dad, it's very hard, i have a special needs daughter and trying to support her with her needs and trying to answer her questions about dp, i don't know all the answers or how to start explaining it to dd, i have no support for myself so all i can do is keep staying strong,i don't know how long i can do it for

[whatisforteamum]

i am trying to support Dad who is in his final months from terminal cancer after yrs battling and Mum who gave up driving after her incurable diagnosis.Dad has been very unwell the last few days.I worked 13 hrs mon and was worried about him although work colleagues are mainly unsympathetic.18 months ago my dh had a major heart attack.Sometimes life can be hard cant it ?

[CharleyDavidson]

Dad's currently stuck in hospital. He went in for radiotherapy. Was having some pain and wasn't feeling himself. He was kept in because his pain meds had become toxic in his system and the pain he was having was due to fractures in his pelvis from where the cancer has spread.

So we've dealt with supporting him through knowing that things are progressing to the next stage (having spread) within a couple of weeks, not months. And on top of that he's been stuck in bed due to the fractures until he'd had a few days complete bed rest and finally being sorted out with physio to be safe on a walker.

He's stuck because they have decided that he needs a hospital bed at home. We've cleared his study to make a downstairs bedroom but no bed has appeared. We are in Wales and the hospital is in England so there's been some red tape holding things up and the referral went astray apparently. It does sound like things are moving now though and we are hoping that one can be delivered asap.

He has limited time and he is aware that he is stuck where he is due to paperwork! Very frustrating for us and for him.

to all doing the difficult job of supporting their loved ones through such a horrible time.

[whatisforteamum]

Oh Charleydavidson im so sorry about your dad its so hard isnt it? I dread my df getting worse.He has an xray today as he has a cough and they need to rule out cancer spread to his lungs now.He is on his 3rd or 4th antibiotics as he keeps getting infections and temps of 102 shaking and shivery and barely eating which for such a foodie like my Dad means he feels dreadful !!its been about a yr since he got ill again and 2012 was bad when he and Mum were both on chemo.So many peoples loved ones are sadly going through this.:(

[LapsedTwentysomething]

Talking of being in Wales but treated in England, my DM has had to move to get a drug via the CDF. Her oncologist was very slow on the uptake to realise that she couldn't have what he was prescribing, even though we'd been aware for some time. Now the drug is available on the NHS but trying to make HCPs understand this is proving difficult. The NICE guidance is there in black and white for all to see but they just aren't familiar with it. It would mean she could have her long-standing GP in Wales and her Macmillan nurse back. Practically it would mean she could get the ESA once her SSP runs out because as things stand she's not entitled because she has property (in Wales) that she's not (can't) live in. Currently she's looking at having to return to work once she's recovered from having her femur pinned to prevent breakage.

I'm really angry at all of this. It's making a horrendously awful time even more difficult to deal with.

[CharleyDavidson]

It does make things more difficult. Frustratingly so.
Nearly a week after he was physically well enough to go home, we managed to get the right people talking to each other today. Dad's district nurse claimed they couldn't get through to the hospital at all. We got through no trouble. The OT lady from the hospital had to phone the nurse herself instead of the other way around. The macmillan people wanted an official referral before they would sort a bed. The DN wouldn't go to Dad to do the assessment, so pages and pages of paperwork had to be faxed through and gone through with Dad instead of them taking the hospital's word for it that a bed was required for safe discharge.

A complaint was made along the lines of the fact that nearly a week stalling the discharge of someone just due to poor communication and red tape isn't acceptable when someone has been given just months to live. What a waste of one of their weeks.

Magically, we had a phone call within the hour to say that a bed was being delivered. It came and was installed no prob and Dad should be home tomorrow.

[groovejet]

My dad has also recently been diagnosed with cancer with a prognosis of a few months, it is so scary to see how quickly it has taken hold of him.

It is hard, I try to stay upbeat for him and my mum, and I try to carry on as normal at home for my daughters but some days I am a mess. Unfortunately like whatisforteamum most of my work colleagues are unsympathetic.

Just wish I lived closer to home so I could help out more, my mum sounds so run down, the hospital have messed around quite a bit so she has had to deal with that, and my dad has had some bad mood swings. He has now been set up with a Macmillan nurse so hopefully that will provide some much needed support for them both.

Thanks for setting up this thread Charley, I think it will be a big help to people to have a place they can come to to let stuff out.

[whatisforteamum]

Groovejet in what way are you colleagues unsympathetic? Mine have either not enquired about Dad which is a bit hurtful or worse been rude or hyper critical when ive already pointed out we ve had bad news about Dad or he is unwell.Tbh my parents have both had incurable cancer but the "they will die anyway deal with it comment" was uncalled for,.

[groovejet]

Very similar to you, no enquiries which as you say is hurtful and things along the line of "oh well he is a good age" and "you have to stay positive about these things and that was after telling them the prognosis. It doesn't help when you get completely brushed off and yet you see other people getting fawned over for very minor everyday things.

It isn't the best workplace to be if you have shit going on in your life unless you are one of the favoured people, I have heard some really nasty stuff about someone who was having a very rough time, just no need for it especially when they is such a huge disparity in how differently people are treated.

My husbands boss however has shown a huge amount of compassion and I have never even met him, crazy.

Sorry you are having a rough time at work, that comment is so hurtful, I understand people don't always know what to say but that is just so very wrong.

Going to visit my parents this weekend, which will be good, it was my Dads birthday yesterday so was a bit emotional all around, had a good chat with my Mum on the phone but will be better to see them properly and help out with anything that needs doing.

[groovejet]

Will say though, that thankfully a couple of work colleagues have been really good so that is something, they are others who are not in the favoured group so we do tend to look out for each other.

Just makes me cross at times and in this situation it can be little unrelated things that set you off, so it is good to be able to vent here so I don't blow up at work.

[CharleyDavidson]

It must be hard if you aren't getting support from colleagues whatis and groove . Mine, luckily, are supportive and do ask about my DF. And my boss also has a poorly Dad so she's very supportive and understanding. I teach primary and it's a good distraction, but very difficult sometimes to push it completely out of mind and focus on my class when we've had bad news.

Lapsed luckily for us, everything that Dad needed was available through the hospital. How awful that your DM was told that something was needed for her treatment, but that she couldn't have it. It's stressful enough without complications like that.

Today is a good news day, however: Dad is home. And he's looking well (for him). His hair is growing back and he's mobile again although the house is full of mobility equipment now to help him and he has his noisy air hospital bed there which is a bit of a reminder that he's not well.

[Ludoole]

A year ago today the family all got called to the hospital after dp's operation to remove a large malignant bowel cancer which had ruptured. They didnt think he would survive... Today we were choosing new carpet!
Its been a tough old year and we know hes getting weaker and cant beat the cancer (metastasized to liver and lymph nodes) but today we are in a better place than we were 12 months ago. Next month or week it may be a different story but for tonight im grateful

[whatisforteamum]

Aww Ludoole that is a very uplifting post and im so pleased you are making the most of each day which lets be honest is all we can do.I too have a positive story summer 2007 Mum was very ill rare cancer spread to the fliud in her lungs which collapsed when drained.told to go home and get her affairs in order.Chemo miraculously worked and apart from major abdo surgery and more chemo in 2012 she is still here.
Dad has been really ill this week so i contacted my cousin who told dads brother.He popped over yesterday and and i did cake and sandwiches while Dad chatted about childhood holidays a chance to forget about his illness and laugh for a moment.
I got signed of by the gp today as ive been getting bad headaches and work are giving me double hrs and expecting me to do them while helping with dad so i now have 2 weeks to concentrate on him without shitty comments or bottling things up anyway im sure midnight finishes are no good to anyone.

[groovejet]

Sorry about the headaches Whatis but at least you get a break from work to concentrate on your dad, hopefully the chance to get away from that kind of environment does you some good.

Had a lovely day with my dad today, my mum kept it all a surprise from him and he seemed to really enjoy himself, not the big day it was going to be originally before all this but still a lovely peaceful day.

My mum seems in better spirits than she has been lately so was a good visit.

[whatisforteamum]

oh good groovejet so glad you all had a nice day.My das birthday is this weekend so weird to think it will be his last (though ive thought others maybe so this is a bonus.Dad was sent to A and E fri as his gp saw high indications from his blood test his infection needed an antibiotic drip.Mum said a day there then they were sent home.His infections are due to his cancer and on a 2 week cycle so waiting to see if he gets another now he has had 3.My workplace is clique if you are young and pretty you get away with more ha ha im twice the age of most people so i usually have to go the extra mile.Tbh someone text dont worry about work.My manager didnt reply to me.Oh well seeing Dad is more important and ive kept them informed of his worsening condition so they shouldve replaced 2 people who left.

[Nousername2015]

Can I join you? Dad was told yesterday that his lymphoma has spread to his lungs, spleen and bone marrow and so now is classed as terminal. Prognosis is 4-6 months without treatment, 1-2 years with treatment. Head spinning to be honest. Dad live alone (parents divorced) and I live 100 miles away so I worry a lot may fall to my sister to deal with although I will try to limit as much as I can. I'm also 14 weeks pregnant so having to face up to the fact that the worst case scenario is that my dad won't meet his grandchild. Sorry this has been a bit of an 'all about me' post, it's just a lot to take in right now.
We have a referral to macmillan but how helpful have people found them to be in reality? I've got experience of them from other family members passing away and to be honest I found them to have the best intentions for the patient but an overstretched service which meant that accessing resources was difficult.

[whatisforteamum]

Nousername so sorry you have had to join us and being far away is harder i imagine.Things have sadly moved on at a pace for us.The hospice nurse has asked Df where he wants to die and he has said at home so she will get hosp bed when its needed.He has also signed a DNR in the event anything happens,He also has "just in case meds" morphine anibiotics etc and syringes so a health professional can instantly relieve any symptoms in the coming weeks.This week he is over his infection and feeling better.

[CharleyDavidson]

Nousername, welcome. And no worries about the 'all about me' thing. That's what this thread is for. We are being strong for those we love in rl and need a place where we can say "but this is hard for me too!"

We have a lovely Macmillan lady. She comes and chats with dad, gives him info about his medication etc. and talks to his doctors if she feels he needs something. She does keep talking to him about hospices with regards to the outpatient services that they could provide, but he just doesn't want to hear about them.

He's finding it difficult now he's home again as nothing productive seems to be happening and he feels forgotten about. We are trying to rouse him to choose a few things he'd like to do while he is currently well in himself.

[Nousername2015]

Thank you for the warm welcome, I'm sorry to hear that things seem to be moving on whatis, and thank you for the advice Charley. Dad has already asked me and my sister to get on with a few things so I spent this morning making an enquiry about a burial plot, it all feels very strange. I did book a birthday lunch for my birthday next weekend for me, my dh, dad, my sister, her dh and their little boy so that should be nice and take everyone's mind off it for a bit.

[LucyGravity]

Hello, could I join too? I am currently looking after my dad who has stage IV cancer, spread to his bones and lungs. He's just finished a week of radiotherapy to help relieve the symptoms of his bone cancer. He starts chemo next week. My parents are also separated and he lives the other end of the country from me. My work has been quite understanding about me taking time off to come and help look after him. Between family we are hoping we can get him through all this treatment ok, but it is hard. I wish I lived closer so I could take him to all his appointments rather than having to enlist lots of different people.

It's hard to know what his prognosis is at the moment. Months if treatment isn't successful, maybe years if it is? Average life expectancy is about 18 months I think, but you have to hope he'll be one of those who does years instead, don't you?

whatis, I'm sorry to hear things are progressing so fast. I hope you're coping as best you can.

[whatisforteamum]

Thanks Lucygravity sorry about your dad like i said before my mum has had yrs longer than expected and dad has had a yr more .Weirdly my Dad has improved again and went out today!!The hospice nurse doesnt know if the infection will return or if he will deterioate rapidly so meds are in place and we just do each bit as it comes.I am returning to work a week early as i feel much better and i am so bored and it will be a nice distraction.

[lu9months]

Can I join in ? My dh has an incurable brain tumour. He's doing pretty well for now all things considered, but it's such a rollercoaster and I feel worn out. I'm struggling with the kids esp my eldest 2 who fight continually. Sometimes just want a break , so frightened for the future

[CharleyDavidson]

Hi Lucy. I hope the treatment gives your Dad some extra time. It's very scary to hear that it's spread as you know that it's the next step. We thought we'd have a bit of time before hearing that news for my Dad but he literally went in on the last day of his 10 days of radio to try and shrink (but not cure) his primary tumour in his bladder to find that it had spread. There was some mention of more radiotherapy for the bone but nothing has been booked. We don't know whether it's because he's already had as much as he can have for now in that general area, whether they don't think he will need it as it was close to the original site or whether he needs to have all the breaks fixed before he can have it. (Adds that to the list of questions to ask the Macmillan nurse).

Hi Lu. Thinking about the future is the scariest thing. And I feel for you, having to be strong for your DH and your kids. My girls (I have 2) have seen my Dad looking pretty poorly, but they know he is their Grandad and that he's an old man.

[LucyGravity]

My dad's is bladder cancer too, Charley. It had been under control for about 4-5 years and we thought he was absolutely fine. Then suddenly he had tumours in his kidney (removed) and then he said "my leg is really sore and there is this funny lump" and that was that. He's got pins in his leg now, thankfully he avoided breaks.

It's when he had to tell us they couldn't cure it and it was just about extending life it hit home I think. People around me don't always get that, they get in the "you can beat this" mode.

[LucyGravity]

And welcome lu, it is so hard being strong. I feel for you.