Can't cope

(38 Posts)
lemonzest123 Thu 18-Aug-16 14:37:16

Hi everyone,

Long long long time lurker, first time poster here.

I'm in the process of losing my Mum and I haven't a clue how to cope with it. The whole situation is so big and overwhelming and terrifying. I'm in my mid twenties, she is 60 and has been sick on and off for 4 years with cancer. Now we are reaching the end of the road and she is bed bound and sleeping all the time. I wondered if anyone who has been through this is able to share with me what to expect at the end. I haven't found the hospice nurses that helpful (although they're lovely) as every time they go into specifics Mum (understandably!) get extremely upset and we stop talking about it. I feel she could die at any second and it's terrifying me. "After" looks like such a foreign and horrible place and I feel like I will go completely mad without her in my life.

sad

Lemon

Babyroobs Thu 18-Aug-16 15:56:50

Hi Lemon. I'm sorry you are having to go through this. It is hard to say what your mum's death will be like at the end but as she is currently sleepy it is likely she will become more sleepy, gradually take less fluids and diet and then slip away. Sometimes it can be more sudden and breathing can change quite quickly. Also sometimes near death people can become agitated or confused or delirious but the hospice nurses will be able to give something to help settle your mum should this happen.
Could you ask to speak to one of the Hospice nurses or Drs away from your mum so that you can speak openly and ask questions without fear of upsetting your mum?
Also please ask if there are counsellers at the hospice as they may be able to help you both now in coming to terms with what is happening and also follow up after your mum has died.

lemonzest123 Thu 18-Aug-16 16:41:21

Thanks so much for writing back. It feels like even though everyone keeps saying 'I'm here for you' and 'let me know if you need anything' it's really hard to talk to people because you just see your own shit feelings reflected back at you and they have no idea what to say and you can tell you're upsetting/boring them.

She's not actually in the hospice, she's having hospice at home which makes it very difficult to pull the nurses to one side. I've done some googling (even though it terrifies me!) and I saw what you said about the person getting sleepier. This has really frightened me now as she is sleeping a lot more but that could just be because of the morphine in take.

I genuinely can't see what life after this will look like and I can feel panic setting in. I did used to talk to my drugs counselor about all this but I don't see him any more. We were all offered family counselling but my Mum said no thanks for all of us (!). I had a look on the MacMillan website but couldn't find anything specific - perhaps my GP will know (when I get one - my to-do list never seems to get done at the moment).

I'm constantly surprised when people say 'you're dealing with this so well' because I really really don't think I am!!! I think they might just say that because they don't know what else to say.

You sound as though you have some experience of this OP hugs It's rotten isn't it.

Babyroobs Thu 18-Aug-16 20:36:06

I don't have experience of watching a relative die slowly, I have however lost my mum and mil and fil all very suddenly without warning in the past few years .
After my mum died ( she was fine one day and looking after my dd then dead the next morning) I thought I could not carry on, in fact I felt suicidal. However each day it did get a little easier, although it is not something you ever get over. I think you just learn to live with the awfulness of it all. One of the most helpful things someone said to me after my mum died and I was racked with guilt and thinking I would never find any joy in life again was that my mum would not want me to feel like that and would want me to carry on and be happy. I try to hold onto that thought. I used to work in a Hospice so I have seen a lot of people die and the vast majority of deaths have been very peaceful and have been as I described in my first post where people just get more sleepy. It is really good that you have hospice Nurses involved as they will be aware of signs of pain or agitation and can ensure your mum is settled and pain free.
If the Hospice Nurses visiting your mum are linked to an actual Hospice then they may be able to advise about counselling. There are also charities such as Cruise who can help although I think the waiting list can be long long. I hope you manage to find some help and support.

Vdara27024 Fri 19-Aug-16 01:02:59

Lemon,
My wee mum passed away almost 4 years ago (in early 60s) from a brain tumour. She fought it bravely upon diagnosis and we got 2 decent years but we always knew it would return more aggressively and surgery would no longer be an option.
Anyway the last 4 months she just became forgetful, quiet, frailer and eventually unable to leave house. My dad nursed her to the very end at home, we had no support from hospice/nurses etc as last few weeks were over Christmas period. We had been dismissed from hospital having been told there was no further treatment available and literally waved out the door. No information on what we could expect, no contact details for any support networks, it breaks my heart and angers me how we where literally sent away not having a clue what to expect. She eventually lost the ability to go for a walk/shuffle outside with my dad. Over last few weeks very difficult for us all. She didn't speak and didn't appear to know us (but I saw twinkle in her eyes sometimes when I talked to her). My dad had to dress and bath her. GP provided a wheelchair and chair hoist for bathing however did not visit. A health visitor came once, attempted to talk to my mum asking her if she was ok (of course she just nodded), ignored my dad then left. We were so worried my mum was in pain and couldn't tell us. We had to feed her and her appetite diminished. She literally aged in front of us becoming a frail lady looking 20 years older than she actually was. Last few days she stopped eating and became bed bound, sleeping all the time. She lost ability to drink water and my dad put her to bed at New Year and when he woke at 3am she was gone.
It makes me cry writing this as all horrible feelings of that hard time come flooding back. Also frustration at lack of support network.
We went into full operational mode to organise her funeral and know sort of a relief as so difficult for my dad at the very end to nurse her.
But I still miss my mum SO very much & enviously look at every lady in 60s enjoying life. Then I look at photos taken of her with grandchildren in last few days/weeks of her life and it makes me sick to see how frail she was and how she couldn't go on.
Do you have close family Lemon? Is your dad still with you?

lemonzest123 Fri 19-Aug-16 13:31:26

Oh my god that sounds horrendous. That just have been such a traumatic experience for you. How could they just turn away from someone in obvious need?! angry

I live in London and the fam around about an hour away by train. My Dad has been an absolute star nursing her tirelessly but she had absolutely no strength because a Timor on her spine is causing paralysis. She was admitted to hospital last night so I'm om the way now to find out what's going on.

Thanks so much for you replies, and I'm sorry again that your family had to go through that.

How do you encourage someone to drink when they've stopped? Was she unconscious at that point? Sorry to be nosey.

lemonzest123 Fri 19-Aug-16 13:34:05

Thanks babyroobs for sharing that. His are you now? Do you still get upset and think about her every day?

Stinkerbelle37 Fri 19-Aug-16 13:43:00

Hiya,

My dad died at home, from cancer. There is a lot of information online about what happens during the dying process. We were well-briefed and had researched (medics in the family). But we still missed some of them, and it wasn't until we had the benefit of hindsight....

And it still came as a shock - which sounds daft really, but it did.

I think it's really important to take their lead, and do whatever they want. If your Mum doesn't want to drink, is that because it makes her feel uncomfortable, is it too hard to swallow, or is she worried about then needing to go to the toilet? Is it caused by something that needs to be fixed, or is it just part of the natural end process? I hope someone at the hospital can help you and can advise you.

Deepest sympathies xx

LuckyBitches Fri 19-Aug-16 15:11:40

My brother died in hospital from Lymphoma, aged 27. About 3 or 4 days before he died he became confused and nonsensical as his kidneys failed, then he had a huge spike of anxiety, which Diazepam sorted out. It was overseas and they gave him palliative sedation; I'm not sure how common that is over here. I do hope it's available as everything was peaceful from that point on. He just slept (loudly!) for two days, opened his eyes and then just died. He wasn't suffering at the end.

I couldn't believe the feeling the day after he died - I was overwhelmed by sadness, it felt like a tiger ripping my guts out. Two years on and I've come to terms with it, and am happy. You will get through this - my advice is to cry as often as you feel like, tears are a great soother. And enjoy the ups when experience them (often incongruously, in my experience!).
flowers

lemonzest123 Sat 20-Aug-16 00:14:10

Ahhh you guys are amazing for sharing your experience. Thank you.

Today we received more bad news, that she can't have any radiotherapy on the not of the spine causing the paralysis so that's that.

Stinkerbelle turns out she was scared to drink as peeing is such an ordeal. Hut also turns out the paralysis has stopped her from being able to pee, so when they finally catheterised her thisneve she passed 1000ml!!! Poor Mum :'-(

phoria Sat 20-Aug-16 02:00:51

sorry to hear you're going through this lemonzest123. i lost my mum recently to cancer. it's a strange thing to go through knowing someone you love is going to die. it's like you're in limbo. even though you're prepared when it happens it still feels like a huge shock. just like Stinkerbelle37 said.

we had a lot of false alarms with doctors telling us my mum only had a few days several times but she kept on going so it got to the point where we knew it would be the end soon but assumed it wouldn't be for a while because she was such a fighter.

i regret not telling her i loved her more in her last few days and what a great mum she was. asking her about how she felt to be dying. was she scared. because i didn't want to upset her. my mum was cared for at home too. it's harder to tell when things are nearing the end as there are no nurses around and as humans even when things are looking dire you always hope they're not right until the very end.

one thing i did notice that made me think s**t this might be it was when her body temperature started to fluctuate wildly. she'd be burning hot with fever and then suddenly her temp would drop a couple of degrees. that's something to watch out for.

one thing i would recommend if you haven't done it yet is recording your mum saying things like i love you and happy birthday when she's alert enough.

big hugs OP xx

Ludoole Sat 20-Aug-16 03:04:28

I lost my husband in December after 17 months of bowel cancer. He was having hospice at home until the morning of his death. On the morning of that day he wanted to go to hospital which was against everything he had said before. We went and they told us it wouldn't be long. He was actually free of pain that day, which considering he had been in pain for 17 months, we were grateful for. He talked to me mostly till the end. About an hour before he died he was talking to someone only he could see, then he turned to me and said "Do you mind if I sleep a while?". I said no and he closed his eyes. Within seconds his breathing changed. It was noisy and i thought he was trying to talk. I called the doctor who said it was normal. They lay him flat and gave him an injection in his leg and he seemed peaceful. I talked to him for the next 40 minutes and told him his parents were waiting for him and I'd be OK. He breathed so slowly that a few times I thought he'd gone but then he would inhale again. It was hard to know he was leaving but I'm so glad I was at his side and the last words he heard were that I loved him.
Hugs to you x

Stinkerbelle37 Sat 20-Aug-16 10:02:00

Hey Lemonzest,

So glad they got to the bottom of her reluctance to drink. She must have been in considerable discomfort to pass 1000ml!

Keep going - it's up to your family now to be her champions, and try to work out what she needs/wants with her medical staff.

And lots of talking. I totally assumed Dad would have written me a letter, but he didn't, and I was really disappointed initially. I wanted something to cling to. It was just too hard to write I think. So, do the talking now instead

Best wishes xx

lemonzest123 Sat 20-Aug-16 11:03:46

Thanks so much for your responses guys and it breaks my heart to hear what you've all been through. I've got an awful feeling that there's not long to go at all. We haven't even seen an Onc yet and the Drs aren't giving us any details at all. Dad has gone home to sleep for a bit so it's just me and her - keep checking her breathing sad

It's all so terrifying.

Also the body temp thing have really freaked me out as yesterday her temp was cold but pouring with sweat.

I feel like all we're doing is small talk. I hate watching her get upset and she cried like mad whenever we talk about the inevitable.

Hugs to you guys and thanks for being there.

lemonzest123 Sat 20-Aug-16 11:10:09

Also from a purely selfish perspective don't think I've ever wanted a drug relapse as badly as I do now!!! angry

botemp Sat 20-Aug-16 12:44:11

I was also in my mid twenties when my mother died of cancer in the span of about nine months from diagnosis.

It was a terrifying and overwhelming time and I felt completely adrift as there simply wasn't anything I could do to change the fact that she was dying and there was no other choice than to accept the situation as it was. It's something that continued on in grief (it's v. normal) until I accepted that I'd done all that I could for her and she'd be the first one to say I'd done far more than necessary. We can't change the past but we can influence how we feel about it in the present. Finding some sense of control and acceptance in it all helped me greatly.

The day she died I woke up with the thought that this was the day. It was a very strong feeling, the decline is visible she was becoming more and more lethargic, losing desire to eat and drink, turning yellow from liver failure, etc. There was no sense in denying the inevitable. She was still lucid the night before, I can't even remember what we were chatting about but that morning she seemed very far away, as if it was just the shell of her.

Her last hours were upsetting for me, she appeared to be in a lot of pain even though we were assured it wasn't the case. The body tends to fight death till the very end. I'd been with her every step of the way of her disease, I'd lived the pain with her for months but this really broke something inside of me.

As hard as it is to imagine, her death came as a relief to me for she was no longer in pain. That's all I cared about at that point, and I was genuinely happy for her release from it. Seeing someone you care for so deeply in pain is something I wouldn't wish on anyone, I could only care about my own loss later. Her death was about her, not me.

After, is just as daunting as where you are now albeit in a different way. It does get better, but it never really goes away. There will be days that are unexpectedly hard while others turn out to be a breeze. It stops being an open wound that renders you useless at the smallest prod. Peers are tough to deal with at this age, the concept of losing a parent is so foreign to most that they simply don't know how to cope. People will surprise you, in good ways and in bad. It makes a lot of things suddenly very clear and establish a level of maturity you didn't know you were capable of.

It's been a few years on now, it can still catch me unexpected at time. The words of others who haven't been through it are difficult to comprehend sometimes, if I mention it to someone new the automatic response is always, 'I'm sorry.' For whatever reason it always feels like they're saying sorry for bringing it up. I always answer, 'Don't be, she lived a full and happy life.' because she did and I'd much rather remember her at her best than her memory being defined solely by her death.

I'll pass on the best advice I received for after, make your bed as soon as you wake up and set out to do/achieve at least one thing each day. It doesn't matter how small or frivolous.

Good luck OP and feel free to PM me if you're ever in need of a listening ear.

lemonzest123 Sat 20-Aug-16 13:48:58

Hi botemp

Wow thanks so muvh for your long and kind response, it blew me away. You sound like a really strong person. I get what you say about living the pain; Ive been doing that too - we've been spending so much time together, experiencing every step together...

I think youre right about the ages group thing too. Althiugh there obviously no good time to lose a parent people my age havent got a clue what to say to me. I dont blame them, but it makes you feel very lonely when everyine says "let me know if there's anything I can do" then changes the subjct as soon as possible because its so awkward sad

Really, thank so much for your reply. Im mostly sitting in a hospital room watching her sleep so it good to hear from the lovely MNers!

phoria Sat 20-Aug-16 17:42:02

sorry didn't mean to freak you out! my mum was the same. we mainly stuck to small talk because we didn't want to upset her.

i would really recommend saying goodbye before you're ready to say goodbye. it seems like a lot of people are able to say goodbye just before their parent passes but my mum was up and about the day she died, was at no point bed ridden and died in just a few minutes. it was over so quickly and i was such shock that i couldn't speak. i really regret that.

anyway i know how horrible and exhausting all the waiting and the constant hospital visits are. feel free to pm me if you ever need someone to talk to.

lemonzest123 Sat 20-Aug-16 17:45:39

Thanks so much. You have no idea what a difference being able to tap out a few sentences is making to my days! Currently in bed. She got a bit snippy with us (happens a fair bit) so me and Pa have come back for a couple of hours and left big bro.

Could sleep for a week!!

ryderandthepups Sat 20-Aug-16 18:07:09

Hi Lemon, so sorry to hear about your mum. I lost my mum to cancer nearly three years ago. It was very quick, only six weeks from diagnosis to her passing away, and my DS was only 7 months old at the time so it has been very hard knowing she won't get to see him grow up. It is awful knowing that you are about to lose someone so close to you. Towards the end mum started to go very cold, especially her hands and feet, which I think was her body starting to shut down. She was very peaceful and her breathing got slower and slower and she just slipped away. I miss her dreadfully every day, especially as there are so many things I want to ask about being a mum. It was a terrible shock when she did die, but I think because my boy was so young I just had to get on with the day to day stuff. I don't really believe in all that stages of grief stuff, I think that losing someone so close to you is not something you get over, but something you get used to. For me anyway. It has taken a long time but I do feel ok now, although I still miss her dreadfully. It's a cliché but just take it one day at a time.

lemonzest123 Mon 22-Aug-16 17:52:54

I think you're right pups about it being a shock - even though I've known this was coming all year I'm going to be in total disbelief when it does.

Someone telling you they're going to transplant your heart without anesthetic doesn't make it any less painful.

Managed to get into the office today to try and catch up but is ridiculously busy and really feeling like I can't face the hospital tonight. sad sad

Selfish I know.

And it's my bloody birthday tomorrow and DP has booked some nice things that will be expensive to cancel. Mum is saying I should go and have a nice day but worried I'll have a panic attack in a restaurant and ruin it. sad

botemp Mon 22-Aug-16 19:44:16

"let me know if there's anything I can do" is the worst, isn't it, when "Fix my mum" isn't really on the table. It only seems to emphasise there's nothing someone can do but people just aren't aware what they're saying unfortunately. I always struggled with people 'fighting' cancer, like somehow those that don't make it are somehow losers who didn't try hard enough.

It's okay to be selfish right now, take your moments when you need it. Hospitals are horrid, there's no getting round it. I'm convinced time ticks slower there than anywhere else when you don't want it to and evaporates when you need it to.

I'm not surprised your mum can get a bit snippy now and then, mine was too. My mother hated being such a burden, losing her independence, and having to rely on everyone and was racked with worry about how it was impacting everyone, what her inevitable absence would mean, then feeling guilty about it, etc. At some point I had to simply point out that it was a disease that was doing this, not her. Rationally she knew this of course but it didn't stop her from feeling it all.

Birthdays are tough, mine was just after her death and it was always a special day between me and her where we had our own special little rituals so the thought of celebrating filled me with dread but I managed somehow anyway. Can you tell DP you're worried you're not up for it, give it a go but for him to be prepared to call it a night early if you're just not feeling it, no questions asked?

GirlWithTheLionHeart Mon 22-Aug-16 19:59:05

Can I post this here as it really helped me.

lemonzest123 Tue 23-Aug-16 00:19:35

Wow its like you're in my head! I TOTALLY get what you say about fighting cancer...I've always struggles with the discourse around cancer...I know "disease is a battle" is a very common cognitive metaphor and we create these to come but it suggests to me there's some sort of strategy to it, like those who "lose" didn't fight as hard or weren't as smart, when in reality it's a roll of the dice.

She's paralysed and incontinent now. It must be so humiliating and depressing. Talked about funerals etc today. I'm determined to get her friends in to visit next week. I want them to see her again.

Seeing birthday in by drinking beer alone next to an empty hospital bed in my parents house watching family guy.

Text my so called best friend and updated her and she phoned but rang off after a minutes because her drunk flatmate wanted to talk to her about getting her fanny waxed hmm

DP will def understand. He's completely amazing. Miss him so much.

Thanks again for talking to me guys!!!

lemonzest123 Tue 23-Aug-16 00:20:21

Thanks Lionheart I've read that before, I love it x

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