How do I support my Mum.....

[winnie]

Mum was diagnosed with lung cancer last year. She is 52. She had been ill for two years and is currently int he process of making a claim against the hospital for medical negligence as big mistakes were made in her treatment and it should have been diagnosed earlier. Anyhow, she underwent major surgery within 4 days of her proper diagnosis to remove the T2 tumor and was then given the 'all clear'. The surgery took a long time to get over and in the coming months she seemed to get a little better but not properly so (in lots of pain, sleeping alot, unable to do anything physical etc)since about Sept she has been getting progressively worse, has done less and less and basically spends her days sleeping or in pain, she has also lost a stone in a very short space of time. She has aged dreadfully. She has been getting more and more depressed and has seemed convinced the cancer is back. Anyway after much pushing for follow ups etc she finally had a full body scan and today she has been told that she has a growth on what is left of her lung, 'something' on her spine and shoulder and 4 broken ribs. I just feel sick. My dd (15) who has always been very close to Mum & is distraught (my Dad unexpectedly died only 3 years ago at the age of 56). I know Mum hasn't been told the cancer is back but given the amount of pushing for a diagnosis in the first place and then the amount of pushing for follow ups we are all very sceptical. Dh had cancer years ago and is very much of the mind that one has to remain positive but today I just feel all over the place. How the hell do I support the people I love?

I feel wretched. It is hidous not being able to tell someone one loves, someone whose heart is breaking, that there is hope

Winnie. I am sure you must feel wretched. When there is no hope, it just hurts and hurts. Your poor Mum.

Blodwen, thanks for your understanding. I have spent all afernoon with Mum. I have to say I was glad of it. We cried, raged against the world, laughed at the oddest things and discussed practicalities. I feel utterly helpless and useless but am glad to have spent time alone talking to Mum. There are a few practical things i can do for her on Monday. She could have two weeks, she could have six months it depends on whether she has small cell or large cell cancer hopefully this will be established on Monday. It was very odd, in her vulnerablity and with tears streaming doen her checks she looked so much like dd it shocked me; I have never really seen the likeness before.

i'm so sorry winnie,love to you and your family

Winnie, I'm so glad you have been able to spend time with your mum today. Strange that you should say about the previously un-noticed likeness to your dd - I often catch sight of myself in the mirror recently, and think I look so much like my mum did...
Does your mum live close to you?
Take care of yourself, too.

Winnie, please feel free to ignore this if it's not for you but before my dad died we held a big party for him to say goodbye to everyone. We invited friends from the past, colleagues (he was a teacher), our family and his friends, about 150 people in all I think. We had a board displaying hundreds of photos of his life, a visitors book for him to look at the next day and champagne and canapes in a smart hotel with friends playing instruments on the terrace and the sun shining. My sister filmed it and it was such a good thing for all of us. He more or less attended his own funeral, there was nothing left unsaid and only a couple of people didn't make it. He attended in a wheelchair, hooked up to an oxygen mask. He was wheeled there by nurses from the hospital (quite a few came to the party) and taken back in a people carrier at 1am. He died 4 days later but I'm really glad we did it, it was a celebration of his life. I know your mum may have more time and as I said this may not be for you, but it's just a thought. I understand feeling wretched, it's normal. Thinking of you.

Oh winnie.so sorry that you are feeling so wretched. It is so good though that you and your mum can speak of these things together she must be a wonderful mother for you both to be so close.Not being able to give hope when all you want to say is 'perhaps its a mistake' or 'the chemotherapy will zap it away' is devastating but so much preferable to hiding from the issue.I have both personnal and professional experiances of situations where the obvious has not been said/ignored/swept under the carpet and believe me whilst it may be the easier solution short term it is not the best. You are so brave. Best wishes to you and your mum

Winnie, so sorry to hear the news. xx

wickedwaterwitch, what a lovely idea. what a lovely thing to do. I vaguely remember you refering to this in previous posts sometime ago. I will talk to my Mum about it. I somehow don't think her partner or my brother will think it appropriate but Mum loves a party and she may think it is for her. She can always say no.

I've struggled today. My children both sat on my bed with their handmade mothers day cards and my dd bought me The Cranks Bible which, as a cookery book addict, I had been lusting after and I just wanted to cry. I felt like a little girl wanting someone (my mum?) to say "it will be alright". Could hardly find a word to write in Mum's card and blubbed over what I did write and she cried when she read it. Have been at the hospital since lunchtime and I helped her bathe and her granddaughters pampered her; dd gave her a manicure and my neice brushed her hair and I couldn't bear to leave even though she was exhausted. I hate leaving her. She is visibly deteriorating by the day.

Dh came to collect me (ds can't visit the hospital as he is getting over a chest infection at the mometn so dh took him to Victoria park for 3 hours)anyway, dh braught a picnic and we went and sat in a field on a river bank with the children on the way home. The sun was beautiful and it was lovely to ahve half an hour with my children and dh before it got too cold and we returned home. Couldn't help thinking about Mum never seeing the winter sun again, never being able to walk across a field again... etc., etc.

Thinking of you, today was bound to be very hard. x

winnie, I'm so sorry

Winnie, Not a Happy Mother's Day for you and yours. And my first one without a mum. It is so horrible to watch someone you love so much deteriorate, and just not be 'themselves' anymore. The manicure, hairbrushing etc. is such a lovely way to spend time with a precious mum/grandma. We did those things too, and I am SO pleased that we were able to.

This is my first day of not seeing my Mum since her diagnosis (she is still in hospital). I hate not being able to go into see her but ds is still too snotty to take and I've no babysitter today so I am going to spend the day with ds as I spent so much time at the hospital at the weekend I missed him.
I can't seem to sit still at the moment Dh has never known such a clean and organised house - between work and visits, children and phonecalls I can't seem to sit down or switch off so I am finding things to do: even the ironing (I never iron!) Must tell Mum when I see her it will make her smile. Thankfully I am spending all day tomorrow with her again.

Yesterday when I came out of work it was so weird because she usually phones me as I am walking home and I thought to myself I am going to have to get used to this absence

I am getting very frustrated as tests that need to be carried out still haven't been done and nobody is being told anything. Am going to phone her gp this morning in the hope that he can point me in the right direction.

Mum was much more herself yesterday, vocal and fighting, so although I know the prognosis is beyond bad the fact that she has her fighting head on has to be a good thing.

You are in my thoughts winnie

Thanks Grmum.

thinking about you.

Winnie, this site moves so fast I've just had to do a search for your thread to see how you are all doing. I missed your earlier posts about the diagnosis confirmation and your Mothers' Day.
I'm in tears here thinking of you all facing your mum's approaching death. Lots of love to you and your mum and all your family XXX Can't think of anything remotely helpful to say, but you are very much in my thoughts and prayers.

Winnie
I'm so sorry to hear your sad news. How is your mum today? And how is your dd? You really have had a lot to bear in recent years. Please carry on posting here: you know you have a lot of people rooting for you. It's really hard to try to look out for everyone, isn't it - to be a mum and wife as well as a daughter. You feel absolutely torn at a time when you only want to concentrate on your mum. Is your daughter able to visit her?
Thinking about dp, ddd and ds (all of whom are probably worried about your natural withdrawal of focus from them) - try praising them for anything they do their support - if you can do it without being obviously ironic! It's hard for all of you, but if they feel they are helping and being appreciated for helping, they will carry on helping. I speak from experience here... Even if it's only your ds making you laugh, or giving you a cuddle, just give them a bit of attention and appreciation to keep them going while you concentrate on your mum. Take care of yourself ... and remember we are all thinking of you

Maybe that didn't come over how I wanted it to. There will be negative things happening in your own nuclear family, there are bound to be with everyone under pressure like this. It may be a time for cutting a bit of slack in your expectations of behaviour, and the carrot rather than the stick.
Why do we always have to think for other people and not just about ourselves? Because we are like our mums ...

Copper, Marina, and KathH, thank you for your kind words. This is just a quick post as I feel like I am running around like a headless chicken at the moment as Mum could be about to be discharged and I am endeavouring to make sure everything is in place for her return home. She has decided to have treatment in the hope it will shrink the cancer and fingers crossed she will get a few more months. Dd is hanging on in there. I am very proud of how she has pulled herself together. I suppose she is walking in my footsteps (as I walk in my Mums), she is being strong and practical and dealing with it all, expressing her feelings and having a weep from time to time but keeping going, knowing that there will be a time to fall apart and it isn't now. Dh is being a great support and doing lots of practical things that because I've been at the hospital I've not been able to do. He is also being a good emotional support too. Ds has returned to being (mostly) cute and funny. I will be glad when she is home.

I was thinking of you this morning and that beautiful, moving description of the Mothers' Day you all spent together.
I have an acquaintance whose mother is also in the final stages of cancer and is not expected to live much longer. However, her mother has been a difficult, manipulative and unloving parent to her children all her life and this behaviour is continuing even now, exacerbated I am sure by the pain her illness is causing. My acquaintance and her siblings are doing all they can to make their mother comfortable and feel supported, but there is no love there on either side...I think it is almost making those final weeks even harder for everyone.
I am expressing this really badly, I think, but your family and your mum are all in this together Winnie, and surrounding each other with love and kindness. She is not making the journey alone. I feel that you all have a glimmer of light in your dark times which my friend and her mother cannot have.
All of us, whether we have been in this situation ourselves, or know that sooner or later we will have to be, are thinking of you and your family. I hope I will be able to handle it with your courage and thoughtfulness and grace.

Winnie,
I have been following your thread and all I can say is I'm thinking of you and I recognise those emotions and feelings. (I don't want to hijack your thread but my dear dad was diagnosed with motor neurone disease recently, and we're trying to come to terms with, and failing miserably, with the thought he will not be around.) These are difficult times but you sound like an amazingly strong person and that will get you through.

Whilst I cannot offer any real advice, like you I have found it really helpful to be open about the fact that I am struggling with the idea that I am losing my father. I hope ypou get lots of support via MN.

I will be thinking of you.

mummydreamer, thank you for your post. I am sorry that you are having such a horrible time too. You are in my thoughts.

Marina, your comment that Mum "is not making the journey alone" is a lovely point to make. As a family we have had our moments (what family doesn't?) but the love between my Mum and my brother and I, and our children is strong and always has been despite our differences. I do feel blessed for that.

Yesterday was a bad, bad day for me. I feel as if I haven't taken a breathe in the last couple of weeks and yesterday I was able to for a short space of time and I felt like I was going mad. I felt so anxious; as if I was about to physically & emotionally explode. I know I need to consciously switch off but I am finding it increasingly difficult to do. I can't get my head around the fact that unless Mum's quality of life is vastly improved Mum is not going to be capable of doing even the small things that she is desperate to do such as having a day out with her grandchildren

Winnie - just wondering how you are and if you have managed to get some additional support. How is DD doing?

Whilst these are difficult times, my guess is that your DD is as strong as her Mum and that will stand you both in good stead. Are you managing to look after yourself and have any time for you at all?

Thinking of you anyway.

Mummydreamer, I am still awaiting contact from Macmillan nurses following a referal via the hospital. I am going to try myself tomorrow.
Dd is hanging on in there. Thankfully. I am better today than yesterday. I have spent sometime today with Mum and hearing her express how frightened she is, is heartbreaking. I feel so impotent. I am not really managing to look after myself at the moment (although I know I need to). For now I am just keeping at it all, shoving vitamins down my throat and juggling everything. I know I need to concentrate on looking after myself more as I start a new job in a couple of weeks and will simply have more to juggle. (I think being very busy suits me as it was with a few hours space yeaterday I started to go to pieces!) Anyhow, Mummydreamer, hope you are coping too. Thanks for thinking of me.Winniex