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Anyone else with family or close friend with a terminal illness want to talk, or vent, or just pat me on the back and say something soothing?

(23 Posts)
HearMyRoar Wed 21-May-14 09:13:40

Today I am going with my mother to visit the hospice she would like to stay in while she dies.

I don't even know what you are supposed to wear in these situations. I spent half an hour changing clothes this morning, and what's more I know that really it doesn't matter and nobody would care if I went in my paint covered old jeans. I am still fretting about it.

She is 56, and like everyone does I had sort of expected my mum to be around for ever. She was diagnosed with breast cancer 6 years ago, had the works; surgery, chemo, radiotherapy. For a while it looked like she was in the clear until they found tumors in her lungs, then spine, now it would be quicker to say where she hasn't got it.

She stopped the chemo a month ago as it was causing her more harm then good and is now assigned to a palliative care team. We all know it is months rather then years, if we are lucky.

I am generally pretty open with people about it. At work the people in my team know, and my close friends know. The thing is I just can't talk to them about the little things. I just don't think they would understand why I am now hiding in the bedroom sobbing because the kittens keep laddering my tights with their sharp little claws and I only have one clean pair left.

I think I just want someone else who has been here, or who is also going through it to tell me they know how Ifeel, and it's shit but we'll be OK.

Elibean Wed 21-May-14 10:14:40

(((HearMyRoar)))

What a painful, important, and ultimately hugely valuable thing you are doing today. I can't pretend to know how it is to have such a young mother so ill (I'm 54 myself, and my parents are both well) but I do know how it is to be engaging with hospices and losing someone you love deeply.

It is utter shit, and you will be OK. Absolutely. You just might not feel it.

I hope some others come along soon and talk to you, with more specific experience to share. Meantime, give the laddered tights to the kittens to play with and stick something you love and feel comfortable in on. Hospice, in my experience, are fantastic at helping you feel at home and able to just be...really not stressful places at all, amazingly.

Big hugs and a hand across the cyber waves.

HearMyRoar Wed 21-May-14 10:31:36

Thank you so much elibean! I have taken your advice and am now wearing my favorite paint covered jeans and feel so much better for it. smile

You can always rely on someone on MN to give good practical words of wisdom when things are tough!

Can I ask a bit about how you found the hospice? My mum has been sure from the start that it is where she wants to go and that she doesn't want to die at home. It would be nice to hear how they were in your experience.

StillProcrastinating Wed 21-May-14 22:28:52

How did it go today?

My dad died at home, but went into the hospice at one point because they were brilliant at pain management. He was discharged from the hospital to the hospice, and went in in a wheelchair, and came out a week later under his own steam. And so was able to be home, as he wanted.

I loved our hospice, it was a really great place. I hope yours was too.

Thinking of you and your family xx

HearMyRoar Thu 22-May-14 18:11:40

Thank you still. It was good and I am really glad I went, though it was hard and it just brings home the reality of the situation. Also my mum had her regular catch up with the palliative care worker and it was the first time I had really heard her talk about all the pain killers, and the side effects, and possible complications like that. It was difficult hearing it just laid out so openly.

But as I say I am really glad I went and feel much more in control and like I know what is going on, well as much as anyone can. I also think it was easier for my mum to talk to the nurse with me there then to say these things directly to me, if that makes sense, and I do feel better for knowing the whole story rather then worrying there was stuff she wasn't telling me.

The hospice seemed nice, it had lovely gardens. My mum has a medical background so I think she finds the idea of having doctors and stuff around comforting but she has said she will keep her options open and see how she feels when she gets to that stage. The only issue with it is that it quite a distance from us and a pain to get to, but I am sure we can work it out if need be.

StillProcrastinating Thu 22-May-14 22:32:07

I bet it was lovely for your Mum to have you there for that. Keep strong for this part, you don't want to waste any of your precious time together xx

highlystrung Sat 24-May-14 08:07:46

Hi All. I took my dad to be admitted to a hospice yesterday. Was the most emotional day of my life. He has advanced lung cancer (though never smoked) and prostate cancer. He is 89 but had me late in life (49). The hospice couldn't be nicer and the hope is that he will be able to come home in a week or so. My mum was in desperate need of respite as she has been caring for him 24/7 for 5 months. I'm one of four children and we've all been doing as much as we can to help - taking it in turns to stay over etc etc but I have 3 young children and live an hour away and my husband works ridiculous hours so it's frustrating that I can't do as much as I'd like. Yesterday was hard - especially when he left the farm that they live on and he loves with all his being - you could tell he thought he'd never see the place again. But I have to say I am amazed by the hospice - they can't do enough for him, or us. The doctor looked at all his medication and talked to us for a long time and it's the first time in months anyone has taken an overarching look at dad's situation. I think they will be able to help him. They are fantastic places. I am taking my children in tomorrow and we are going to have a roast dinner with my dad in the lovely family room there - it's a place I feel my kids will be happy visiting, it's so beautiful and calm. Just wanted to share my experiences and to say you're not alone. It's such an emotional rollercoaster isn't it. I cried all the way home last night. x

highlystrung Sat 24-May-14 08:09:35

I'm 40 by the way, not 49 - that's how old he was when I was born. Reading your post above it's so true that they can say things to the hospice staff that they can't say to us. Yesterday the doctor asked where my dad would like to die and it's the first time we've had that conversation. It was so hard, but important. x

HearMyRoar Sat 24-May-14 19:27:34

Hi highly

I am really glad that the hospice seems such a nice place, and it is great that they are taking a proper look at his situation. My mum had a really bad patch where we were all phoning the relatives to come visit because we thought it was the end, then they referred her to the palliative care team from the hospice and she is like a different person now.

It's made so much difference having people who are focused on her quality of life not just treating her, if that makes sense. They have looked at everything with her from medication and treatment to sorting out carers allowance for my dad and getting her a wheel chair. They really are amazing people smile

It must be horrible to reach the stage of taking your dad in and seeing him leave his home, even if he will hopefully come out of the hospice again. You just can't know how it will all go. The uncertainty of not knowing how long we've got really gets to me. Sometimes I just wish it was all over while at the same time I want her with us as long as possible.

meerschweinchen Sat 24-May-14 22:50:02

I'm so sorry for what you are going through. I have little experience of hospices, but having lost my Dad to cancer last month, I do have some understanding of the pain you are going through.

My situation is very different, in that he was diagnosed with cancer, and then died very suddenly a week later. He hadn't even seemed ill, so the diagnosis was hard to take, and then the sudden death is still hard for me to truly comprehend. In some ways I suppose we were lucky to have been spared seeing him deteriorate, but hard that we didn't have the time to say everything we wanted to. You will have to chance to talk to your Mum, but it must be horrible watching a loved one become frailer, knowing there is little you can do.

For what it's worth, the hospices I know are amazing places and really will help everyone - the patient and the whole family. The one Dad might have ended up in is apparently very good, so I'm sure your mother is in the best place possible.

I can understand the whole dilemma over what to wear. I think sometimes when faced with something so big and momentous as this, we focus on the small details, as the bigger picture can be too hard to take. I know I spent ages trying to find exactly the right card for making the funeral order of services. Really it was so unimportant, but I think I needed something trivial to focus on.

I really hope you have many more nice days with your mum, and I know it must be so hard. I've read that once you have a terminal diagnosis, the grieving process often starts, even whilst our loved ones are still with us.

My thoughts are with you at such a difficult time x

highlystrung Sun 25-May-14 08:26:58

Meerschweinchen I'm so sorry for your loss. It must hand been a terrifying two weeks between your dad being diagnosed and dying. Your right when you say its lucky to have time to say goodbye properly. It's a real double edged sword. You watch them suffer for longer but you have more time with them - and I'm grateful for that time. Hearmyroar I can also totally relate to you when you says you sometimes wish it was over but then you don't want to lose your mum. I've had very similar feelings - especially as it's been having a huge effect on my mum and I worry how she will cope the longer it goes on. Is your mum with a partner or are you shouldering most of the care and support? It's such an overwhelming thing to go through, especially if you're doing all the caring as well. Does she have people coming in to her home to help? Did she like the hospice?
I went to visit dad again last night and although he seems bored ( which I'm taking as a positive) he is a lot less confused and agitated than he was at home for the few days he went in. He is in a room with three other men, which to begin with I was a bit upset about but now I'm pleased because two of them are like him and expecting to go home. I also think it's helping him to be with other people in the same boat - he's not putting all his effort in pretending to be okay. Anyway big hugs to all who are suffering due to this crap disease and it's effects. Peaceful Sunday to you x

HearMyRoar Mon 26-May-14 20:41:38

The shock of something like that happening so fast must be so hard to deal with meersh. I imagine it will take a long time to just comprehend what your dad's death.

I do often think how lucky we are too have this time. Just things like being able to talk about her funeral so I will know what she wants and won't be left worrying we are doing the wrong thing.

Highly my dad is her main carer. He retired early on carers leave to be with her and is being amazing. He even learnt to cook and has been feeding her up on home made cakes smile I do worry about him though and really don't know how he will react when she dies. Thankfully they have some really good friends and my dad has a very involved group hobby so that should help I think.

It sounds like it had been good for your dad to be with other people in his room who are in the same boat. Bored sounds like a good thing to, in an odd sort of way. I'm glad he is seeming better. How is your mum coping?

Hope everyone has a good bank holiday despite the rain!

Elibean Fri 30-May-14 10:46:30

I'm so sorry, HearMy, life did its thing and I haven't been on MN for days...but I'm so glad you went in painty jeans smile

My uncle has chosen to stay at home, with his cats. Hospice is involved, as they have a 'Hospice at Home' program...but hopefully he will get his wish and not have to go in. I find it very comforting to know they will take him if needed, though.

The people and the care in Hospice all seem fantastic - ditto with Hospices my sister has worked in (bereavement counselling) and friends, too. The admin side of things at my uncle's hospice has been a tad flaky at times, but the care side is not in question and that is more important, at least to me!

So far, all I can say is that the small practical physical issues count hugely as my uncle's world gets smaller and smaller (on the outside). And his feeling in control as much as possible counts too - he is calm, and relatively pain free much of the time, but very weak and incontinent now. I can still speak to him on the phone, but only for a few seconds.

It was his birthday this week, and I'm sure he felt loved by all the calls and gifts, but also clearly felt burdened by having to thank people/speak to people. He's always been solitary, but now its a lot more than that...he's very tired. When you're trying to retreat from somewhere, I suppose too much attention pulls you back and stops you going.

Elibean Fri 30-May-14 10:48:44

Highly, I think you're so right in describing the relief in not having to pretend you're ok anymore - possibly even harder for men of a certain age?? - my uncle fought like hell to pretend he was ok (when he totally wasn't) and once the upset of 'giving in' was over, he had a new lease of life for a while. I think he was using all his energy to pretend.

KeepCalmAndLOLKittens Sat 05-Jul-14 20:12:13

Can I join you? My DH's cousin, who is 33 and has a 10yo DD, is currently in a hospice suffering end-stage bowel cancer. It's been three years and now we're just waiting. It's awful - until recently she was a life-and-soul party girl but is now weak and hopeless.

This has caused me to think hard about my DM's chances. She had a nephrectomy to remove an aggressive (grade 4) tumour last October. No-one has given a prognosis - in fact the aftercare has been pretty shocking with mum slipping through the net for follow-up appointments and scan results with alarming frequency. But she is 58, lost a lot if weight prior to the diagnosis, and has metastasis to lung and other small tumours elsewhere. She refuses to think about the future. I am beginning to realise that she's unlikely to live much longer.

Mum is currently undergoing biological therapy. This in itself is taking a massive toll. She has always been active but now struggles to work due to corns, dead skin and blisters as a side effect of the drug. Her blood pressure is erratic having always been low (she was told off on a recent visit to the medical centre, by a nurse, because she has one of their precious blood pressure monitors at home - given to her by a GP to monitor BP daily!) Her hair, lashes and brows are growing white and her skin is puffy and lacks pigment. She doesn't even look my DM any more.

I have told DH today that though I am starting a new FT job in September, I will be giving notice if she is given a terminal diagnosis. Our financial situation is precarious and tied in with hers, but if she dies we no longer pose a risk to her and I will worry about my own DCs' financial future later.

Sorry I'm rambling. I also realise I'm being perhaps offensively pessimistic, but I'm trying to steel myself for what may come. According to Cancer Research, the average 5 year survival rate is just 8%.

KeepCalmAndLOLKittens Sat 05-Jul-14 20:13:59

Sorry. I didn't make it quite clear that my intention to give notice is so that I can care for her.

Procrastinatingpeacock Sun 06-Jul-14 15:27:08

Hi all, this looks like a good place for me to have a little rant. My mum (in her fifties) has had a terminal diagnosis for some time now but has been able to live a fairly normal life for the last couple of years. Her most recent scan was bad news though and she has been put back on an aggressive chemo to hold it at bay for as long as possible. She is really struggling both physically and mentally. I knew this day would come but it doesn't make it any easier and now things seem to be spiralling out of control far faster than I had ever imagined. It is so hard. So sorry for everyone going through something similar.

HuggleBuggleBear Sun 07-Sep-14 23:45:17

Hi hope it's ok to join this thread. My mum has terminal cancer at 62 years old. She got told prognosis of 1-3 years this was 2 years ago. It's just totally cruel. I feel cheated that this dark cloud is hanging over my family. One thing that helps is simply reminding myself of all the happy memories we have created. Since she was diagnosed we have made a greater effort to plan quality time. Hugs to everyone going through this.

Eyespy24 Mon 08-Sep-14 09:09:23

Can I join too?
I've already met peacock on another thread.
I'm in a situation similar to huggle. My DM has stage 4 colon cancer & has been given about 18 months. She's having intensive chemo, which is starting to take its toll. Cancer is just so, so evil.
It is just awful to have it hanging over us all constantly.
I am so sorry to hear of others in a similar boat. I'm trying to plan some nice things for when chemo finishes to give something nice to focus on.

OP how are things for you?

nemno Mon 08-Sep-14 21:49:59

My dad has terminal cancer. He is still pretty well but that may only last to the end of the year if we're lucky. Mum died of cancer last year. I am living a repeat loop, I spend a lot of it with my dad and away from my husband. But last time round dad and I nursed mum together, this time it is just me (I have astoundingly callous siblings). It is always in the background, it is very draining. Months of appointments behind us, another CT scan tomorrow. It's very shit.

Eyespy24 Tue 09-Sep-14 09:41:10

Nemno that is awful for you after what you've been through with your DM. Of course awful for your DF too. I'm so sorry.
I can sympathise about siblings too. My DM doesn’t even want my DB to know about her diagnosis as relationships between us all are so bad (virtually no communications at all).
It is just so unfair, such a cruel disease & why us? I know there's no answer but I often think that.

nemno Tue 09-Sep-14 11:04:52

Thank you Eyespy. I'm sorry I didn't acknowledge that you and many others are going through it too. And I feel for all of you. I think going through it is actually the only way I would have come to realise how wearying and relentless the whole process is. I know I used to sympathise when people told me their relatives were ill with cancer but I know now I didn't get it. I should have been a better ear for them.

Take care and keep going brew

HearMyRoar Wed 10-Sep-14 21:29:37

Hello everyone! I feel like I started this thread ages ago and then sort of lost it.

I'm sorry for everyone who is going through similar experiences with loved ones.

nemno I know exactly what you mean about just not understanding the relentlessness of it, particularly when it has been going on for years. My mum was first diagnosed with breast cancer over 6 years ago now and things have progressed with ups and downs since then. It sometimes just seems so exhausting and I often just wish it was all over, even though I don't want it to be over at all as now 'over' can only mean one thing. It's all very confusing. That is just an aspect I don't think you can ever understand unless you have been through it.

I am also a fully paid up member of the feckless sibling club eyespy. My brother is about as big an arsehole as possible and the only times he has been in contact with my mother since her diagnoses has been to ask for money. He has now thrown all his toys out the pram because she has refused to give him any (being on benefits and all) and gone no contact with her. Grrr...the other 2 aren't as bad as that but not really much on the help front.

I am lucky thought that my dad is able to care for my mum and is being amazing with her. I can't imagine how hard it must be to go through it all a second time nemno

My mum has now been diagnosed with a brain tumour on top of the breast cancer that is in her bones, lungs and spine. She started some radiotherepy for it last week but then got a chest infection over the weekend and has ended up staying hospital. They have started the radiotherepy again but dad says she is in a bit of a bad way. She can't walk or even get up out of bed any more and she is finding it hard to process information. She is on so much meds that she has all puffed up, put on loads of weight due to the steroids and looks awful. Like someone up thread said, she doesn't even look like mum any more.

The hope is that the radiotherepy will push the braid tumour back enough to keep her going a bit longer. Until the rest of it gets her I suppose.

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