Can't cope

[lemonzest123]

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.



Lemon

[Mnp2015]

Thinking of you LemonZest123. Xx

[frostyfingers]

I don't know if it will help but I read the newspaper and magazines out loud when I was in your position, just so they could hear my voice and knew they weren't alone, and to give me something to distract me. Maybe if you know a book or something that she likes it would be soothing for you both.

It's so hard, take care.

[botemp]

I'm lacking the 'right thing' to say right now but I'll be keeping you and your mum in my thoughts.

This thread somehow disappeared on my 'watching list' but it's good to see you're still around. If I'm up tonight/early morning I'll check in on your other thread.

As for the remaining parent/partner thing, I have to say my father still isn't coping all that well years on but I'd put that down more to his personality than anything else. His social circle has always been more work colleagues than actual friends and even if he had them when it comes to emotions he's a stick your head in the sand type so I doubt they'd be all that helpful.

His grieving process was very different to mine, same with my brother, and we all just had to sort of respect that and work around it. My dad really makes a big point about certain days (anniversary of her death, birthday, anniversaries, etc.) where with the exception of my own birthday as mentioned above those days don't harbour special meaning for me at all. I've noticed for my dad they're really important because he holds it all in year round but is 'allowed' not to on those days. Being physically around for him on those days (he still clams up at the mere mention of my mother's name unfortunately) is soothing to him so I make sure I'm just there.

It was a bit touch and go in the beginning, I had to really pay attention to how much he was drinking where that had never been a concern before. He hid it well and only ever drank in excess on days where he wasn't expected to work the next day. It seems contained now but it was worrying then nonetheless. I think the black hole he fell into after was bigger for him, the reality of my mum dying really didn't resonate with him until she physically died, he was really unwilling to accept that it was going to happen until it happened.

These days he'll jump at the opportunity to attend any funeral, even if the relation is very distant. I think he just wants to connect to people feeling the same thing without having to actually talk about it, I can't make up my mind whether it's healthy behaviour or not. It worries me that he still feels it so intensely as if it just happened but at the same time he's processing in his way. He is doing better these days (and general life, work, etc. never really suffered, one really had to know him well to detect anything was wrong) but I think the grief is something he'll always cling onto. I'm half convinced if he ever finds another partner again she'll be a widow or a cancer survivor but I sincerely hope it would be someone without that baggage and for them to connect over something else.

Apologies for the verbosity once more, I'm crap about being succinct about these things as it never feels all that black and white.

[lemonzest123]

Hey lovelies,

Final hours/days now :'-(

She's constantly asleep and if she does wake up makes no sense, not eating or drinking. Thank god she doesn't seem to be in pain atm.

Adopting brace position....

[2littlepiggies]

How are you doing op?

[lemonzest123]

PM me if you need to Mumwhatnothing x

[lemonzest123]

Hi both,

Thanks for sharing your experiences. I've got tears in my eyes because I can feel the exact pain you describe! I'm on my way home (1 hour away) in huge amounts of guilt for not staying at my Dad's house with him (they live in big 5 bed, my Dad's alone there tonight). Which leads me to the question if how you parent or guardians surviving partner coped, if there is one? They're been married 36 years and he doesn't have many close mates and would never ask for support. Its breaking my heart so hard thinking of him being left alone.

I should have stayed but I selfishly really wanted to see DP as he's at mine and going home to his 200 miles away on Fri.

[mumwhatnothing]

I know how you are feeling. My mum (59) has recently been diagnosed with cancer and only has days possibly a couple of weeks to live. I flew over from Oz as soon as I heard. Unfortunately my mum can hardly hear anything and can barely speak so having those last few comforting chats are impossible. I can't hug her because she is so uncomfortable she doesn't really want to be touched. She sleeps a lot. All she wants is to go outside for a cigarette but she is too weak to sit up so we can't get her in a wheelchair. We feel completely useless and since the Drs have said the cancer is terminal and there is absolutely nothing to be done we are totally helpless. We can't fight for our mums life and we can't grieve because she is still here. I don't know what to do or how to feel. I have to leave for Oz on Monday and I am so scared I won't get to say goodbye to my mum or be there for her funeral or tell her anything she should know. She can't hear me she can't understand and she can't tell me it's all ok. Because it's not. My whole life I could never imagine this pain and fear but now I am stuck right in the middl of it with nowhere to turn.
I'm sorry for hijacking your post but your situation made me realise how little I and my brothers are coping too.
I'm so sorry for your situation and I hope you find some support and your mum is comforted by your presence.
I'm so sorry for unburdening my soul. I can't cope either.

[pinktransit]

I'm so sorry that you're going through this :(
I haven't lost a parent, but I did lose my partner last year.
He died 6 weeks after being diagnosed with pancreatic cancer, and spent his last couple of weeks in hospital and then the last days in a hospice.
When it came to it, the end was very peaceful. I was at the hospice for the last 24 hours, as were his sons. The hardest part for most of the last day and night was listening to his breathing - as he couldn't clear his throat his breath was raspy and noisy. It sounded horrid, but when we looked at his face he looked peaceful, as if he was just sleeping normally. Right at the end, I was chatting with one of the nurses, laughed about something she said. She left, and Pete, for the first time in over 24 hours opened his eyes and looked straight at me. I went over, held his hand and told him that everything was ok. He looked at me, then looked slightly surprised, and then he was gone. His breathing stopped briefly and then started again for a few breaths (I was so relieved at this, as I'd been so scared that he would literally stop breathing and suffocate and it would be awful).
I was so grateful that we all had some time with him to say what we needed to say - for me that was that I loved him, that I was so happy to have been part of his life - his sons also had time alone with him.
We sat with him afterwards for a while, then the nurses came and made him comfortable. That sounds really strange, but he died lying in a slightly awkward position, and they straightened him out, and made the bed etc. We then had the opportunity if we wanted to spend more time with him. We did, then the lads left and I stayed with him for a while longer. I didn't want to leave him, even though he was gone. It was really good to spend that time - and the nurses promised that they'd take good care of him once I'd gone home again.
His death was peaceful and dignified, just me and him at the end.
It's been very nearly a year now, and it's been the hardest year ever. It doesn't get better, but it does get easier eventually. One of the things that I found helped was this reading.
www.mumsnet.com/Talk/bereavement/2507594-How-to-deal-with-grief

The reading linked about about death being nothing was the one that I read at his funeral. I found out afterwards that it's one that was read at his mums funeral too.

[GirlWithTheLionHeart]

That sounds like a lovely birthday, well done for doing it! Your mum wants you to enjoy yourself so you must!

[lemonzest123]

Hi lovelies,

Im with her now, she's drifting in and out of sleep but hopefully we'll be able to watch a bit of bake off. Yesterday was very traumatic in the morning, lots of crying and stuff, but she made me go to my birthday activites my DP had booked. I howled all the way there on the train and DP cuddled me then took me to Harry Potter studio tour and then to our fav hotel for dinner and stay over (where the staff made me a birthday dessert and gave free bubbley). It was a lovely diversion. I contacted work and told them im starying my minths paid leave now, its a huge load off my mind. Hopefully she'll nat least make it home for a few day

[scatterolight]

How are you doing Lemon?

I just read through this thread after coming on here feeling down about my mum. I lost her 3 years ago but it's still incredibly difficult. I really feel for you going through this. It is a terrible experience. Just know that others have been here and are thinking of you. Whatever consolation that brings Bless your mum and take care.

[GirlWithTheLionHeart]

Happy Birthday

[lemonzest123]

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

[lemonzest123]

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

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

Thanks again for talking to me guys!!!

[GirlWithTheLionHeart]

Can I post this here as it really helped me.

[botemp]

"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?

[lemonzest123]

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.

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.

[ryderandthepups]

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]

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!!

[phoria]

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]

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

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!

[botemp]

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]

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

[lemonzest123]

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

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.