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Life-limiting illness

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Original poster

A thread for those supporting relatives with life limiting diseases.

778 replies

CharleyDavidson · 13/07/2015 19:42

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. :(

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whatisforteamum · 01/12/2015 23:41

So sorry you ve had this news groove
jet.i hope you can speak to your dear dad and support your Mum,xx

nemno · 05/12/2015 18:27

Groove Just to know I've been thinking of you and hoping that you and your family are coping ok .

Hugs to everyone on this thread xx

groovejet · 05/12/2015 21:22

Well an update that is not much of an update, despite that call and a fair few what we thought were his last moments my Dad is holding on, I don't know how but he is.

I left to stay Wednesday, he was no longer conscious and was having large gaps in his breathing, me and my Mum were encouraged to go home that night as despite the gaps it was in a consistent pattern. In the morning we were called to advise to come in now, so we rushed in and have stayed in the hospice since. He has had a few moments were his breathing was much much shallower and with much bigger gaps.

My sister has flown over and she is now staying at the hospice with Mum, I was going to stay but my Mum thought I should come to try get some rest and see my daughters.

Feel very strange being home after being holed up in the hospice, as much as I wanted to stay by Dads side until the end it does make sense to come home for a day or even 2 if he stays like this, it is also one less person for my Mum to worry about.

So really all we can do is keep waiting and hoping at this point that he lets go, so his mind and body can be at peace.

Hugs to you all xx

whatisforteamum · 06/12/2015 08:00

Oh groovejet my heart goes out to you all.I cant imagine how you are feeling,so glad you got home to see your daughters.
I ve been wondering how you are coping Charleydavidson ? im not even sure if you are back at work yet.
Strangley enough Dad has had a burst of energy since his transfusion and steroids.He even bought a xmas tree for the front garden as he took their fir tree out in july when he thought he wouldnt be here Mum loves christmas and obviously it will be his last..He has even driven a couple of times.i know this wont last however it is lovely to see.
Sending hugs to you all on this journey no one wanted to be on. xx

Original poster

CharleyDavidson · 06/12/2015 10:51

Sorry to read that, groove. I'm glad you have had a little respite yime with your family. You can feel that you have to be with your dad as much as possible but it's a very difficult thing to do.

What is, I am back at work and have been for a fortnight. The children in my class are a good distraction. I'm doing ok on the whole, until I stop to think about it. I have flask backs to all sorts of difficult moments through the year, as well as to some of the nice ones. I cry most days about it and mostly I'm sorry that he had to go through it. And a bit sorry for myself that I can't see him. It's been a month. I've never gone a month without talking to my dad before and it hurts.

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Original poster

CharleyDavidson · 06/12/2015 10:53

I'm glad the transfusion has helped and you and your mum are having nice times with your dad. Some lovely memories are made in the better times I think. I'm grateful for the ones we had.

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groovejet · 06/12/2015 13:31

Charley xx It will come when the happier memories are more frequent than the sad ones, take care of yourself.

Whatis, pleased that the transfusion has helped and you are able to enjoy some moments. xx

Have spoken to my sister, Dad is still much the same. Spoke to my boss and explained how things were, it is a bit of an unusual situation as no-one would have expected this delay from receiving the call on Tuesday. She said no-one was really expecting me back before the end of term but I will need a sick note. Plan is to go to GP first thing tomorrow and beg to be seen so I can get signed off, drop it into work and go back to the hospice.

As for me, my body feels rested after sleeping in my own bed and so nice to see my DH and DD's and the dog but I feel very on edge, very panicky when the phone rings and stomach is in knots. Trying to relax as much as possible.

Original poster

CharleyDavidson · 06/12/2015 21:15

Can you call to request a sick note without the fuss of being seen? I was able to do that. At my GPs you can call and ask, they write a few notes down and then put it to the doctor when they have time in the morning. Then they call you up if they feel they need to speak to you about it at all. It did help that my Dad was also at the practice (and that the lady on reception remembered him personally from when the function rooms he used to manage was where she had her children's 18th and 21st parties) but they wrote me a 3 week sick note no question.

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Original poster

CharleyDavidson · 10/12/2015 22:34

Thinking of you tonight, Groove. And of all those on this thread.

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whatisforteamum · 11/12/2015 20:48

thinking of you all as we approach christmas and all the emotions that this time will bring.xx

groovejet · 11/12/2015 20:53

Haven't been updating as went back to the hospice and my phone is no good for going online, although some nights I certainly could have done with the company of mumsnet.

Dad passed away last night, it was very peaceful after he put up such a long hard fight that amazed the doctors and nurses at the hospital. Sad really as his heart and his one working lung must have been so strong that he would have gone on for years if it wasn't for asbestos.

Has been an incredibly hard week, but pleased that we were able to be there for him and each other, hardest part was leaving the hospice and walking past his room knowing that he was in there but it was no longer him. Just feel a bit numb now and sad that I won't see my lovely dad again and sad for my daughters as he absolutely adored them.

Thank you for the support and letting me take over the thread a bit the past week, and as always hugs to you all xx

Original poster

CharleyDavidson · 11/12/2015 20:58

I think, sadly, that we will all have our turn at 'taking over the thread', I know I certainly did and was grateful for those that replied.

I'm sorry to read your sad news groove. I'm glad it was peaceful, and I'm sure that it was still a shock to have it happen even if it was expected.

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whatisforteamum · 12/12/2015 09:44

groovejet i am so sorry to read this.Your Dad put up such a fight and i am pleased you were able to be with him.Condolences to you and your family,Dont even apologise for "taking over the thread" ive rambled on here when dad has been really ill and i thought that was the idea.
We were all on a difficult journey and i hope you will both pop on here still.

groovejet · 12/12/2015 13:44

thank you both xx

Just trying to keep busy at the moment,off work until next Wednesday will see how I get on.

Funeral will be on the 23rd of December, just got to wait for the coroners report, due to it being an asbestos illness there is a bit more paperwork involved but they are hoping to avoid having to do a post mortem.

nemno · 12/12/2015 13:54

groove so sorry to read this. Condolences to you and your family xx

Nousername2015 · 13/12/2015 21:40

Just catching up on the thread as haven't been on for ages. I'm so sorry to hear your news charley and groove. For what it's worth you both sound so strong at dealing with such a heartbreaking time. My condolences are with you both

I'm sorry to hear of others having a tough time too.

Only a quick update here as it's not really the right time to post about my situation. Dad has completed chemo and now in the 6 week wait until the pet scan to see if it has stopped the spread. Also got a 2nd Christmas planned with all wider family this year as we know it will be his last which leaves me with a very strange feeling. I'm now 34 weeks pregnant so . hopefully not long until he can meet his grandson.

Personally I hate this time of year, thoughts with anyone else struggling with it to, and especially groove and charley

groovejet · 14/12/2015 10:50

Thank you Nemno and Nouser xx

I hope your Dad gets some good news from the pet scan Nouser, and I hope that you get to enjoy your Christmas with him and make some lovely memories, good luck with the rest of your pregnancy.

We are busy with the funeral plans, unfortunately my sister hasn't been able to extend her plane tickets and will have to head back to her home this week but at least she is around to help with the organising of it all.

whatisforteamum · 15/12/2015 12:04

Hi Nousername i really hope the chemo has stopped the spread.It must all be harder to deal with whilst pregnant.
My Dad just rang to say he is coming to the restuarant i work at with MumIt means alot to me as he wanted me to work somewhere nicer than i did before and he can see it for himself.
Remarkable when he could barely stand or eat in november.week for week and all that.
Thinking of you Groove as it makes me feel so sad to read your Dads funeral is so close to Christmas.Sending you strength to get through this time.xx love to all on here.

groovejet · 15/12/2015 18:57

I hope your Dad enjoys his visit to the restaurant whatis, really pleased that he is going through a good spell xx

Thanks for your well wishes, it is hard trying to plan it all before Christmas, trying to still keep it upbeat and the same as usual for my dd's.

Christmas day will be a bit chaotic as well, my sister was able to change her flight but is now flying Christmas day at teatime and her husband is due to fly over for the funeral as well. A hire car would cost too much apparently so DH will be having to drive them to the airport. We will make it work but just extra stress.

Beeswax2017 · 20/12/2015 18:03

This reply has been deleted

Message withdrawn at poster's request.

groovejet · 20/12/2015 23:03

So sorry that you have to join this thread LivinLaVidaLoki xx

You have an awful lot to deal with and I am not surprised that you feel that you can't cope, it is certainly not selfish in any shape or form.

Has your Mum got a Macmillan nurse, they can offer support and put her in touch with day services, it won't remove all of the stresses you have to deal with I know but it can offer some respite. They are also there to support the family not just your Mum.

Beeswax2017 · 21/12/2015 09:00

This reply has been deleted

Message withdrawn at poster's request.

groovejet · 21/12/2015 17:17

Hope your Mum has been able to talk to the consultant today Livin.

Try again with the Macmillan nurse, my Mum did find the one assigned to Dad a bit "flighty" but she did offer support. If not Macmillan how about district nurses, my mum find these to be a great help.

whatisforteamum · 21/12/2015 18:40

hi livinlavida and im sorry you have so much to deal with.I know the feeling of having had both parents get this vile disease at advanced stages.Hanging on in is good and i hope your Mum can get advice asap.Meanwhile you can call macmillan on 08088080000 for a chat or medical advice

Original poster

CharleyDavidson · 21/12/2015 22:06

Hi livin. Welcome to the thread noone wants to be on. You should be able to get hold of a Macmillan nurse in the community rather than just the one that was there at the hospital.

I hope your Mum got to talk to someone today who was helpful. xx

to all coping with difficult times.

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