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 am so very sorry Charley, you and your family have my deepest sympathies xx

So, so sorry to read this Charley. You and your family are in my thoughts

oh goodness me im sorry Charleydavidson that is what happened with my fil .My heart goes out to you and your family.Sending you condolences and love xx

Thankyou for all the lovely messages. xx

Really sorry to read that Charley. I hope you're coping.

I am, thanks. It's hard, but because we've had the bad news in stages, I've also grieved in stages too. Then it would be surreal because there'd be a plateau with nothing changing and it not seeming to be real. Then another bit of bad news and another truth to face. Something else to worry about.

I'm still quite bereft knowing I won't see him/speak with him/hold his hand or kiss him goodbye again, but it was inevitable. I am having memories of the good times mixed with the memory of him being poorly and the memory of how he looked after he passed. And I have thoughts about where he is now, which I don't like, and try not to dwell on.

It's felt like an age, since he was first diagnosed with a problem nearly a year ago, but on the other hand it's flown by. There have been lots of special moments along the way though, which might not have happened if we didn't know that time was so short.

Hope you are ok, Charley, have been thinking of you this week xx

We are doing ok. There have been tears. Lots of tears. But having grieved at each different step along the way has made things ever so slightly easier. It still doesn't feel real and was weird to not have to be rushing off left, right and centre to the hospital.

Seeing him after he'd passed was not something I was sure about. And certainly not something I enjoyed. My sister regrets doing it, but I don't. It showed me that he was no longer there and has made the next steps more bearable. I don't fear the coffin on the funeral day, for example, because I know it's not really my Dad in there.

The hospital were slow to sign the paperwork and it's busy round here, so there's been a delay in sorting out the funeral, but we now have a day (Thurs next week) and have been busy making decisions and getting things sorted.

Work have been great and have not expected me this week or next, but I've phoned my GP to get a sick note anyway. As a teacher, there's no money for cover without a sicknote so it helps work and makes me not worry about not being there.

Good to hear from you Charlie, you've been much in my thoughts. I don't know how far behind you I am with my Dad but what you're going through is still fresh in my memory from Mum. It is hard but there was a relief she was at peace too. But watching the surviving parent over the following weeks and months is unbelievably painful. It is great that your Mum has the 3 of you and you have each other too. Wishing you kind thoughts and easy memories x

Re-reading that I realise that is way too much about me, I'm so sorry Charlie.

Honestly, Nemno - don't worry about it for one minute. I feel like I monopolised the thread a bit recently as things came to a head.

I started the thread for posters to support each other, not just me and I hope we can still do that. xx

Nemno - did the stoned state you mention change with the review of the doctor or is that still a side effect of the meds he needs for his pain?

Whatis - I can't imagine going through additional stress with what you are already going through. How are you?

Groove - I hope your school are as compassionate with you when the time comes as mine has been. I didn't know you could get signed off for bereavement, but it's been a relief to know that the school are not handing money over fist to pay for my cover. I will have been off for 3 weeks by the time I go back.

That's really kind of you to think of us x

Yes, the doc changed dad's meds as he thought dad's liver must not be processing the drugs correctly. Dad is now physically more active. Unfortunately he is much more muddled and disturbed in his thoughts. He needs much more supervision. That he would get dementia-type symptoms before being bed-ridden hadn't really occurred to me. It is a massive worry. I'm talking to the doc again tomorrow.

I spoke to work about leave I officially get 3 days but my manager told me to get signed off for 2 weeks technically I would have to receive a warning as the company comes down heavy on sick leave absences.

Did you manage to speak to yours dads Dr today Nemno, hope things are ok.

My Dad finally agreed to go for a stay at the hospice and went in today, it is meant to be for a full pain med review and to provide respite for my Mum as she has not been coping but they have not actually said how long he will be in for, but at least he is in good hands and my Mum can have a break as things have been very tough for her and the mood swings were getting worse.

Groove. That respite sounds a godsend, hope your mum can make the most of it and de stress a bit.

I didn't speak to the doctor as I discovered Dad had got in a muddle with his pills even though they were organised in a compartmentalised pill box. So now I've taken his drugs away and am supervising taking them. He seems very relieved, it appears to have been one of the things worrying him. He is a bit more alert today and we have family visiting so he is more stimulated and lively. He'll enjoy a family roast lunch.

The doc is here Tue so will have a chat then. He did say last week that Dad's liver is not processing the drugs very well and his pills were reduced to lessen the load.

Hope all on this thread are coping ok xx

Hope you Dad has a lovely day today Nemno xx

That's kind Groove. He did enjoy it but is knackered and dopey today. It was worth it though I think.

But goodness I wish he would accept help from other people. A couple of minor jobs Dad wants done and I asked my niece and her husband to do them, they were happy to, but Dad then says the job doesn't need doing. It was only cutting and fitting new Vetbed into his dog's bed! Arrgh! But they were allowed to take dog for a walk :)

Hi everyone and thanks charley for asking after me/us.Just seen Dad and remarkably he is springing to his feet to make coffee ?? The man who could hardly stand 2 weeks ago.His blood transfusion has worked wonders and his pain in his back and legs has almost gone.My sis dh and their drugs raid has been a huge worry and they may lose their home (quite rightly so however january they will find out their fate or his).
I had to defend myself regarding my new job as a chef has an op and wil be off a month so they put me down for lots more hrs,i had to say this wouldnt be good for me with all my additional stress.my manager was cool with it and we came to a compromise.the chef was off with me and said he didnt want to get angency,He will get over it as my priority is my family and not having a nervous breakdown in the process.love to Nemno and groovejet and may we all have an easy week,
I will be thinking of you particularly on thursday Charley and i hope you can give your Dad a good send off

Blood transfusions can be magic, can't they? MIL had one after her ulcer gave her problems and the difference in how it made her feel was brilliant. Dad had one after his chemo knocked his levels and also bounced back and felt marvellous for a while.

It might annoy a few now, whatis, but you will have peace of mind that you have prioritised you and your family in this difficult time. xx

Dad is going to get a cracking send off. We have been told by the funeral directors (who knew Dad and how popular he was just as a mason, never mind how popular and well thought of he was as a family member and friend) to print 400 orders of service as they expect the service to be packed!

The service is sorted and all decisions made and now we just have to get to and through the day itself. It's a shame that Dad never got to the point of accepting what was going to happen and never making any of his own preparations for 'after'. As a result, we've had to make decisions based on our own gut feeling of what he would have wanted, or at least not minded, rather than having any information from him to go on.

Luckily if that is the right expression both my parents have discussed funeral plans as they are both incurable.Dad went to the funeral directors in july to save Mum the worry when the time comes.So lovely to hear that your Dad was a much loved man and i hope thursday goes smoothly.My condolences to your family,xx

Whatis pleased that the blood transfusion has gone so well. Good that yor manager is understanding and the other chef will have to just get over it.

Been a roller coaster week, Dad was settled in pretty well into the hospice and my Mum was getting a much needed break but he has had some pretty upsetting hallucinations. The hospice have no plans to discharge him I suspect from his condition and these hallucinations that he may not make it back home. It is difficult, as he wanted to be at home but I also know that if he was actually aware of what he is like and how much stress and hurt that it places my Mum under that he wouldn't choose to make her go through it.

Charley it certainly does sound like a cracking send off your Dad was clearly a much loved and well thought of man. I will be thinking of you Thursday I hope everything goes smoothly.xx

I haven posted since when I originally did back in August. I've lurked and thought about you all but didn't feel able to post. It takes a lot doesn't it? It's a bit like giving something away, to me.

I am deeply sorry to read about your dad, Charley. My thoughts are with you and your family, and also to others here going through such a difficult time. I can't express how saddened I am by it all. It's never off my mind.

I updated a couple of times on the thread I started so I won't repeat myself here, but Dh is back in hospital now for the 3rd session of 5 days continuous chemo and should be home on Friday. They hope that 6 sessions of this will be enough.

To look at dh you wouldn't think anything was wrong except for all the hair loss, and the tiredness between treatment. I keep going through waves of anxiety, I'm so worried he will leave me. I have no family or friends near me and we have 3 young children. Dh had a cry on Sunday and that's really upset me, he's usually so upbeat even when going through this.

He has a scan booked for the end of the month so we will be able to see if the treatment is working. My mind is racing with all the what ifs they may tell us. I think Im still in shock.

Sorry for hijacking the thread. And Im so sorry that so many people are going through the same.

GuyMartin so sorry you are having to go through this it is so difficult anyway but with 3 children and no nearby friends or family it must be very hard

I really hope that the scan results come back showing the treatment is working xx

GuyMartin I wish words could help, I wish even more that your family gets good news really soon .

Thinking of you for tomorrow Charley x

Guy, have you had a good look around on the Cancer Research UK and Macmillan websites? Sorry if that sounds patronising. Although it's doom and gloom on here, try to bear in mind that many, many cancers are controllable and he may well be with you for many, many years to come.

I'm going with my DM to the Marsden on Friday in the hope of getting her on a trial as a last ditch attempt to prolong her life. She turns 60 next week. It will be so weird to celebrate her milestone birthday and this Christmas knowing they'll be her last.

I'm really struggling with a situation at work atm and to be honest it's all I can do to stop myself pouring a third gin every evening