Wanting to help my mother

[Bookgirl2]

Hello everyone

I joined the forum back in January but this is the first time I've posted. I did join the live chat today but got disconnected from the chat room and couldn't reconnect (sorry Jeni - I think you may have offered some advice but I was disconnected before seeing it) I've read many of your stories and never fail to be impressed by how much support so many people going through terrible, tragic experiences offer each other.

My mum (75), who has suffered from kidney failure for the past thirteen years, was taken ill very suddenly in the middle of the night in late November and was admitted to hospital where they diagnosed ulcers. She later became jaundiced and had a CT scan which detected 'a blockage'. Following more tests she told us on New Year's Eve that she had been diagnosed with pancreatic cancer, which they did not believe was operable. She was alone when she was told - she was about to go to the renal unit for dialysis and the nurse said that, although they usually have a policy of telling patients when they are with a family member, in my mum's case they were worried that if they said nothing someone in the renal unit might read her notes, assume she knew already and mention it. However, I later found out she knew before they told her - she had been left alone in the room and had read her notes - that's how she found out, sitting there alone reading it, which makes me feel so sad. We were told she would be referred to an oncologist at the [Hospital name removed - moderator] but when he assessed her case file he said there was no point seeing her as there was nothing could be done. She's not having chemo. She's so weak with the kidney failure anyway that I don't think she could take it and I agree that there's little point putting her through that. We've been told it's a matter of months but that it could be three, it could be six - it could be anything really. The gastroenterology nurse told me they don't re-scan to monitor the progression of the illness and they assess how close to the end a patient is by symptoms such as pain levels and energy levels. My mum has no energy - lies on the sofa all the time unless she's in dialysis and only dresses on dialysis days but how do we know if this is due to the cancer or the kidney failure? It's probably a combination of both. I worry we won't get a clear idea of how long she has. I worry about whether she could just die without much warning - might I be stuck at work and unable to get to her in time? I worry most about whether her pain levels can be controlled. I can't bear the thought of her suffering. She is on fentanyl patches, plus something else that she takes orally (name escapes me at the moment), plus paracetamol but she still gets a lot of pain, especially in the last hour and a half before she is due to take another paracetamol. She is very brave I think, but sometimes she cries with the pain.

The nurse at the gastroenterology unit referred her to the palliative care team at our local hospice (not Macmillan, they don't cover our area). However, at first it was hard to convince mum that they would be the experts in pain control and more. As far as she was concerned her case was being managed by the doctors she familiar at the hospital (renal unit, not specialists in pancreatic disease or cancer) and her GP, who has been very good and is visiting her every week, so when the palliative care nurse called mum said she didn't feel she needed an immediate visit. They gave her the number to call when she did feel in need. A couple of weeks ago her pain got really bad and she agreed she should speak to them. She phoned last Monday afternoon and was told they were busy and she should phone back the next day. She phoned again on Tuesday after dialysis and again, was told they were busy but that someone would call her back either the next day or on the Friday (as she had explained she was in dialysis on Thursday). When she hadn't heard back by Friday afternoon I suggested we call again and she said 'no, they are busy and will call when they can' (typically mum 'don't make a fuss'). When they hadn't called by the end of Monday I felt even if they are really busy surely it shouldn't take more than a week to at least phone someone with stage 4 PC and in extreme pain? I called yesterday and left a detailed message on the voicemail. I then missed the call back as I was in a meeting. Didn't manage to pick the message up until after hours and was astonished to hear someone saying that they had found the records and that my mum had been referred to them but had been taken off the list as it was 'inappropriate' and that if mum wants to see someone she needs to get the hospital or her GP to do another referral. I can't understand what has happened. Why would she be taken off the list? She has stage 4 pancreatic cancer - how can it be 'inappropriate'? I wondered if there had been a misunderstanding when mum said she didn't need an immediate visit but at that point they gave her a number to call when she did want to see someone so it can't be that. It took quite some time from the first referral for someone to call her and I dread having to tell her she might have to start again from that point through no fault of her own, all the while being in pain. I'm also worried it might make her lose faith in the palliative care team and she might say don't bother getting them involved.

I feel so sad and afraid. I'd like to take time off work to be with mum but not having any idea how long she has means I'm scared to take any considerable time off and find I've mis-timed it and not be able to get time off when she most needs me. But I'm worried about not taking time off and then losing her. I can't afford to take much time off unpaid. My husband no longer works as he has Parkinson's. He needs a lot of help from me and I feel he's being neglected now with so much of my focus on mum. I'm also desperately worried about my father who is 89 and devastated by this diagnosis. He adores my mum. He lost his first wife to breast cancer when he was in his thirties. He shouldn't have to go through this again. I wish I could help them both.

[J_T]

Hi and well done for making your first post. I'm very sorry to hear of your mums diagnosis and with kidney failure as well it must be very worrying times for you.

I would suggest talking to your mums GP about palliative care, ours was very good in getting some action when we felt adandoned. Do stress how worrying it is that nobody seems to have a handle on your mums care and keep on until you get the required help. It sound like your mum needs an increased dose in her pain relief.

Regards to your work situation, can you talk to your manager or personnel department to explain the situation and ask if they can be flexible whilst your mum is so ill.

Good luck

Julia x

[Didge]

I am so sorry for what you are going through and I totally relate to what you are saying about the work situation and taking time off. I am working and my bf with PC is unable to at the moment because of treatment and I am constantly wondering how I should manage my time and his. I do think you should ask for an urgent referral to one of the specialist pancreatic cancer units for assessment. There are 5 in London and the [hospital name removed, and it is a specialist centre - moderator] is not one of them. You can find them on this site, under 'Your local specialist centre'. I will be thinking of you at this awful time and hope you get some progress soon with support for her, which seems to be sadly lacking.

Didge x

[Bookgirl2]

Hi Julia, hi Didge

Thank you both for the kind replies. Work are actually being very good, and I know they would gladly give me the time off - I just need to know when would be best (which is impossible really). I already work one day a week at home - and gave up one day a week completely recently - due to caring for my husband and we live just five minutes drive from mum and dad (moved to be closer to them a year ago thank goodness) so we are luckier than many in those respects, it does allow for a bit of flexibility. Didge - it may not have actually been the [Hospital name removed - moderator] - I only got that info from mum, who may well have got it wrong - but I'll check with the gastroenterology nurse today if possible. The GP is being very good and I know he referred her to the palliative care team, as did the hospital, so I have no idea why they discharged her without seeing her. They are not answering the helpline at the moment but I'll keep trying.

Thanks again to both of you for taking the time when you have such troubles of your own, I hope you are coping as well as can be Julia and Didge, wishing you and your bf all the luck.

Best

Susan

[nikkis]

Hi Susan,

So sorry to hear about your mum. It took us a little while to get our local hospice on board to help with the pain, but once we had the right people involved they were amazing, so tell you mum to persevere.

[Hospital name removed - moderator] is a specialist centre, as part of the same group as Bart's, and seem to have lots of expertise,

Nikki

Footnote - Thanks Nikki. Yes, you are right, it is a specialist centre, but we prefer names of hospitals to be left off a public forum.

Jeni.

[Cathy]

Hi Susan,

I am so sorry to hear your story.

I am wondering if you live near me? My partner used those hospitals for oncology and for vascular surgery and we also don't have a Macmillan service nearby...

I completely empathise with your work dilemma but it is good to hear they are at least being supportive. I had the same dilemma myself after my partner was diagnosed, whether to go off now and then be stuck someway down the line when I have used all my entitlement up and he suddenly deteriorates. There really is no easy answer. Really I had to assess things as he felt and in our case we were fortunate that he felt ok a lot of the time but like you I started to work from home one day a week with flexibility around being able to leave early for appointments and so on. As the year progressed I changed that to 2 days a week. As I was saying tho, he was well and often when I did work from home he'd be out or entertaining at home. I finally went off completely when he started having problems in December and I'm still off now and in a way maybe that was good timing as I'm not being chased to return to work (yet!) whereas if I'd gone off much sooner I'd potentially be looking at the ill health procedure and losing pay (I have quite a big mortgage). Looking back if I could change anything it would have been to work from home more often but I had such battles initially to get some kind of support from work I think I was happy with what I'd got and, in any case, as I said, he seemed to fill in his days well doing other stuff. Perhaps you could look at trying to get more flexibility from your workplace for now, or go part time if you can afford to?

Sorry, this isn't a more helpful reply. There isn't an easy way to assess anything so indefinite.

Cathy xxx

[Bookgirl2]

hi Nikki and Cathy

Thanks to both of you for finding the time in the midst of all your own troubles to reply. Have had a tough couple of days and pretty much asleep on my feet now so won't linger but wanted to say how much I appreciate the support. Such lovely people on this forum.I'm in Easex btw Cathy. All good wishes, Susan x

[ChrisD]

Hello Susan,

I am really sorry to hear about your Mum and your predicament.

I totally echo the points made by Cathy, there is no way to predict how the health of your Mum will progress.

I am pleased that your employer is supportive and long may this continue. I would speak to your District nurse about the Palliative care options that are available - I hope that you will be pleasantly surprised at the support that could be available to your Mum and you.

For what it is worth (with the experience that I am living now), is to look after yourself and prepare for a marathon - the journey for your Mum, Dad and yourself could be a long one.

My Mum wishes to be at home and I consider myself to be lucky that there is the most wonderful compassionate (and experienced) support available from a small local charity that specialises in palliative care (particularly 'night sitting').

My thoughts are with you on the unpleasant roller coaster,

.... Chris

[Bookgirl2]

Hello everyone, and apologies to ChrisD, who sent me a message back on 7 March that I didn't reply to. Things had got very bad for us over the previous couple of days. Apologies for the length of this but so much has happened.

When I made my first post I was tearing my hair out trying to get someone from the palliative care team to see my mum. After I posted I called the Upper GI team at the hospital. Neither of the nurses I had spoken to before were there but the one I spoke to promised that my mum would be re-referred to the palliative care team at the hospice that day. I visited her GP that afternoon and he said he too had referred her, as well as the hospital and that he would chase it up. He also couldn't seem to understand why she hadn't been seen. When I told him I was worried about working out when I should stop working to be with her all the time he said in his opinion she still had quite a long way to go yet. I had to go in to work the following day but the day after (Friday) got up intending check up on the referral and then to visit mum and dad. This was pre-empted by an really panicky sounding phone call from the upper GI nurse specialist who said that she had just called mum and was really worried about her pain levels, especially her back and that there was a chance the cancer had spread to the spine. She told me to call an ambulance and to get mum into hospital asap. Once mum was admitted they got the pain in her back largely under control and she was sitting up in bed laughing and chatting like normal, but it was the following Wednesday (12th) before they'd got all the scans done and the results back. It seemed the cancer wasn't in the spine after all so they discharged her late on Wednesday, even though she was very weak and due back in the following morning for dialysis, which I thought was strange. Mum called me late that night to say she was home but was too weak to do anything for herself. Luckily I had already arranged a day off the next day as I had been feeling so drained with everything that had been going on so was able to spend that day organising some adaptions (raised loo seat, getting a safer pathway from the house laid etc) and spending time visiting them.

Over the weekend she seemed to rally a little, though by this stage she needed a two man ambulance team and wheelchair to get her to dialysis and was still in a good deal of pain. I reassured her that the Upper GI team had promised she had been referred to the palliative care nurses and that she would be seen soon. However,when I called them(on Thursday 13) they said they hadn't referred her as they'd brought her in to hospital on the Friday (though what on earth happened between Wednesday, when they had promised me she'd be referred and the Friday?) but that she would have been referred via the ward she was admitted to. I asked the nurse if she could double check to make sure that had happened. It hadn't so it was only then - over a week after I'd been assured she was being re-referred as an urgent case that the referral happened.

I'd missed a lot time at work so went back on the Monday. Tuesday afternoon dad called me at work (he has never done that before) and said mum had had to stop dialysis early as she just couldn't stand it, was home but very confused and asking for me. I raced home but when I got there (thankfully) she seemed a lot better. Weak, in pain but in reasonable spirits and pleased to see me. Given what had happened though I started to feel that she might well be kept in hospital after Thursday's dialysis session so I arranged to work from home in case I needed to get to the hospital quickly. Wednesday the palliative care nurse finally called me and said mum was on a list and would be seen early the following week. There didn't seem to be a way of fast-tracking this which was heartbreaking as I was convinced she still wasn't getting adequate pain relief.

Surprisingly they sent her home again (I'm sure in part due to her determination not to be in hospital) after Thursday's dialysis. I spent time with her on Friday and Saturday (after another short dialysis session, ended early as she just couldn't tolerate it. She was very tired and still in pain. At 6.30 on Sunday morning my dad called us to say that mum had been too weak to go to bed the previous night, had spend the night on the sofa and now wanted to go to bed but had no strength to move herself and he couldn't move her. We rushed round and I was shocked to find her on the sofa, still in the clothes she'd been wearing the day before. We couldn't move her either, she didn't weigh much but with no strength at all was a dead weight. My husband has Parkinson's so couldn't really help. Trying to move her was so distressing. Seeing the helplessness in her eyes and the pain she was in when we trying to lift her. Eventually we managed to get her into the bedroom and I asked her if I should call her ambulance and she begged me not to. Kept saying she would if she didn't feel better the next day. I knew she needed to be there but she was so distressed I couldn't go against her wishes. My uncle also tried to persuade her but with the same result. Eventually, at about 5.30pm she suddenly said she needed to be in hospital. We followed the ambulance. She was in A&E from 6.30pm until 12.40 am before she was finally admitted. She just needed to be somewhere quiet and peaceful and with proper pain relief but instead she spent hours on a gurney in a noisy, chaotic A&E dept. The doctor I spoke to said she could still hang on a few weeks although nothing was certain.

I finally got to bed at 3.00am after one of the worst days of my life - and that of my husband. I didn't go to work the next day but didn't go into the hospital until the afternoon - I felt physically and mentally drained. Somehow in my mind I had decided she was in the last one to two weeks of her life. I went into work the next day so I could show my face, not having been around much in the previous week and with the intention that that would be the last day I'd go in until the end. Of course this was a mistake. That afternoon (Tuesday 25 march) I got a call from a Macmillan nurse to say I might want to come into the hospital. Mum wasn't in pain (finally, because the Macmillan nurses covered the hospital area mum had been able to see the right person to help her) but had deteriorated. Even then though she said it's not a tearing hurry but you might want to come in - I asked her if she thought mum only had a couple of days and she said yes, the next day or two.

When my husband and I arrived at the hospital we were shocked beyond belief to see her. I had expected her to be weak and drifting in and out of consciousness, a bit like she'd been over the previous few days though weaker but without the pain. I was expecting to camp out at the hospital for a day or two but as soon as I saw her I knew she didn't have that long. I hope she knew we were there. Her body gave a little jolt when we arrived (the only movement she made all the time) but her eyes seemed to be staring without seeing and were rolling. I held her hand and whispered in her ear to tell her that I loved her. She took her last breaths within half an hour of our arriving.

I can't believe that I kept saying I wanted to take time off to be with her at the end but that I misjudged it so badly and over the last couple of days probably spent less time with her than I had all along. I can't believe that I didn't realise quite how close to the end she was. It seems to obvious now in hindsight that I almost feel stupid writing that. I think my brain was so addled with everything, the cancer, the kidney failure, my husband's parkinson's, trying to hold down a demanding job on next to no sleep, worry about my dad, that I just wasn't able to process exactly what was happening. The GI nurse originally said, it could be three months, it could be eight. Somehow in my head I decided that probably meant around about four to five. That she didn't even make it quite to three months has shocked me to the core. I wish I'd got better advice. I so wish I'd called the nurses on this helpline for advice. I wish I'd gone to the hospice and refused to leave until I'd got some proper help for her. I wish I'd spent more time with her. I never thought I'd be someone with big regrets when either of my lovely parents died. Now I just feel consumed, not only by overwhelming grief but a hideous, poisonous guilt. I know so many people here have faced this terrible ordeal and have done better by their loved ones. I don't know how I am going to move forward.

I'm sorry this is such a long post, from someone most of you know nothing of, but I felt the need to share my experience with people who understand this horrible situation.

[J_T]

I am so, so sorry you have lost your lovely mum. Sorry too about the shambolic lines of communication between the people who were supposed to be looking after her.

Please, please, please do not berate yourself over the things that happened. I think quite a few of us do this - could have, would have, should have! No! We've never dealt with stuff like this before, we just do what we think is right at the time and to the best of our ability and with love.

You did your utmost under a lot of pressure. I'm sure both your mum and dad were/are proud of the way you dealt with things and that you were there for support!

Look after yourself.

Julia x

[sandraW]

I am so sorry you had lost your mum but please don't feel as though in some way its your fault, even the medical staff don't know how "long" people have left as every one is so different. Just be glad that you were there when she passed and that you could hold her hand and tell her you loved her, its such a shame she didn't get the help she needed to make her more comfortable earlier, but you tried your best to get things sorted for her. It does seem strange that in this day and age these mistakes still happen, and they do often it would seem. Please don't apologise for your post that's what the forum is for, thinking of you and sending best wishes to you and your dad at this sad time, take care sandrax

[Guest]

I've just read all your thread. So very sorry about your mum. I am absolutely disgusted how you have been treated and your poor mum was treated. I know it is hard not to take responsibility and to not feel guilt, and I guess that will only fade with time, but please don't blame yourself. You did the best you could. We realise our strength at these times. You all should have been treated better, the so called medical team are to blame, and I hope they feel the guilt.

I am having to fight for care for my dad, who has stage 4 pancreatic cancer. I know how hard it is. It is a fight I shouldn't have to be doing. He should be getting the help and care that he deserves, instead of my crying to these people, begging for help. I too wish I could do more, but I feel I have run out of people to ask to help.

Please keep posting on here, if it helps. Let out your emotions, you need to express them, and I imagine you are struggling to do that in'real life'?

Lot of love

xxx

[Bookgirl2]

Thank you so much Julia, Sandra and Leila. It means so much to me that you all spared the time in the midst of all your own troubles and worries to reply. My husband, uncle and best friend also keep telling me I have nothing to feel guilty about. The trouble is when I talk to them about it that sometimes starts to make sense and I begin to feel a bit of a sense of perspective but then I find a little while later all those overwhelming feelings come flooding back. I suppose there are some things I feel really guilty about that I haven't managed to fully articulate, maybe because I'm too scared to admit some of it to others so I assume if anyone knew the full story they would blame me/hate me/think less of me. At the moment I'm finding it hard just to function. I'm having to force myself to go to work and then I do next to nothing when I get there. Everything seems flat and meaningless. I miss my mum so much and feel I wasted so much time in the past on stuff that wasn't important when I could have just been sitting with her talking. I feel like I'd give anything just to sit and talk to her. I was already in the midst of depression about my own childlessness before mum was diagnosed and I feel the weight of that even more now, partly because I feel having children would be the one thing that might help me to cope and look forward to the future, partly because I know how much my mum longed to be a grandma. I feel less able to cope by the day and at the same time I feel, almost a month on, others are expecting me to pull myself together and move on. Sorry for the wallowing and thanks so much for listening. Wishing everyone luck and love, Susan x

[Guest]

Hi Susan,

I understand your feelings so much. I often think I should get over more, take holidays from work and see him. But I want to save my holidays for when I seriously need them. I don't know about you, but my work is not very compassionate at all. I know for certain that is this was happening to one of my colleagues then she would get whatever she wants. I feel that it is a case of ' if your face fits' and as I'm not one of the more outgoing and sociable ones, I don't fit. I too find everything else meaningless. Colleagues will come and speak to me about work, or their boyfriends and I just don't care. I hate faking smiles and conversations when my head is screaming " my dad has cancer, I don't care about your silly life".

I am sorry you don't have children, and that you long for a child. ( guess there is more to this?). I understand your feelings of wanting your mum to have met her Grandchild. I have never been maternal, but I have been seriously thinking of falling pregnant so my dad could meet my baby. If I knew I would never have one, then fine, but if I do in the future, I would regret him not meeting them.

How is your work being with you? Are they expecting you to forget all about it and carry on? Could you take a few week off, or have you already done this? It sounds to me as if you have so much anger and hurt to still come out. I know it is hard to do this with family, as they don't really understand, and possibly just don't want to be shouted out? My own partner doesn't understand my anger, and takes offence when I explode.

Please come on here as often as you need to and write all your feelings down. I will read every word you write.

Lots of love

Leila xx

[Bookgirl2]

Hi Leila

I'm so sorry to hear that your employers are less than sympathetic. You have to think these people must have been totally untouched by any personal tragedy to be so unfeeling but also must have little or no compassion. We are part of a group of people who know from bitter experience that it's impossible to really imagine what it's like for someone to go through this, yet I'm sure we all felt beforehand that we could imagine, and what we imagined was so bad that surely we would have been more understanding? Most people at work were very sympathetic and, to be fair, my immediate boss was one of them. However, someone higher up than him is totally lacking in empathy and had only a surface gloss of sympathy and I never felt supported in taking the extended break I felt I should be taking. Now I just wish I'd done it anyway and to hell with the consequences. Too easy to say now though. I'm sure I could take time off now but in a way I don't want to. I feel like I should have had the time off when I could have spent it with my mum - to take it now would seem wrong - and pointless.

I'm sure some people here think I should be back to 'normal' now. I don't feel like I'll ever be normal again. What is normal anyway? I certainly feel like a different person to the one I was a few weeks ago. The world, a world without my mum in it is a totally different place as well and, as we've said before, everything seems pointless and meaningless. My husband is lovely and sympathetic and patient. He loved my mum too (though of course not in the same way as me) and I can see how much it's hurting him to not be able to help me feel better. I love my dad so much but he wants to spend every day with us and it's just too much - I don't feel I ever get a break or space to process my own feelings because I'm spending so much time with him and dealing with how he feels. I've always wished I had a brother or sister, now more than ever - to have someone to share this with who is in exactly the same position would surely help? Or even just from a practical point of view, having someone else to split the time with my dad would be such a relief.

How is your dad at the moment Leila? I read some of your thread (a lot of it seems not to exist anymore?) and I can see what a tough time you are having. I wish I had a some useful advice to offer. You must feel so frustrated and distressed not being able to find any solutions to your dad's problem.

I do wish you both well and looking forward to talking again. Thanks for all the support. I suppose I should really move to a new thread on 'Coping with Loss' or more like 'Not Coping with loss'

Much love and thanks again for the sympathetic ear.

Susan xx

[Guest]

Hi Susan,

No one here would think you should be ' back to normal', I am absolutely certain of this. I also think, that after the death of a loved one that it is impossible to be the same person again anyway. We experience too much, and see too much to just go back to the person we once was. I know I haven't lost my dad, but I am a different person already, to who I was 4 month ago. I am normally quiet, and shy of people. If I don't know them I don't speak to them. I am normally very unsociable. I have made so many calls, to so many different people. I have seen how people treat people, and from that alone, I know I will never be the same. You are still you, but a new you.

My boss has never once asked about me or my dad. The only time she mentioned it was to tell me to keep it to the back of my mind and not let my work slip, as she has noticed mistakes. Again, seeing people in different light. I could possibly understand it if I were a Rocket Scientist, but I'm a Receptionist in not very busy place.

I am sure your mum understood that you had your husband to care for and a job to hold down. From what I have read in your posts, you were with your mum when she needed you. When your dad called, you went. I think the only way you could have done more, is like us all, leave our job and our family, and sit with them 24/7. I would love to do that. I have even asked him if that is what he wants me to do, but he doesn't want me to. I think he does, but he's seeing the bigger picture.

I too don't have a brother or a sister. When I was young, I didn't want one, I was happy alone. Now though, I would love one. I live a 90 minute drive away, and I don't drive! The train journey is 2 hours. To have someone close to him, and be there at the drop of a hat would be wonderful. When he needs me, I can't be there just like that. My parents are divorced as well.

I don't know how it must feel to have your dad around all the time, when you need to grieve. I imagine it must be hard. Can your husband cope with you letting it out in front of him? Where abouts are you? If you don't mind me asking.

My dad is reasonable today, thank you. He is seeing his oncologist tomorrow and hopefully restart chemo on Thursday. I have given him a lost of questions I want him to ask him. It is just frustrating for us both, because considering he is stage 4, he is pain free and able to go out with a huge appetite. I want him to go out and enjoy life. He is losing weight drastically, and is forever on the toilet which is making him depressed.

If you feel like you want to start a new thread, then do so. It might do you good to not keep coming back to this one, too many reminders maybe? You can always mention this thread in it, so people can refer back to this one if you wish. Up to you.

Lot of love

Leila xx

[Didge]

Dear Susan

I am so sorry to hear your sad news. I think misplaced guilt is so bound up with loss. We try to turn the clock back mentally and see what we could have done different. But all your decisions were made with love and care for your mum. Try to focus on the positives, all the things you did manage, like being there with her at the end. You still seem to be bravely struggling on with no respite. I hope you get some time to be kind to yourself soon. And yes, you do deserve a break. It's not pointless! Perhaps you could go somewhere which had special memories for you and your family and give yourself time to grieve but to relive some happier times too. As others have said, you can always come here to vent or share, no matter how much time has passed.

Didge x

[Bookgirl2]

Hi Leila and Didge

Thanks so much to you both for replying.

I realise I wrote something very misleading in my last post, Leila. When I said I knew people 'here' would think I should be over it by now, I didn't mean here on the forum. I was typing my message at my desk at work (I know that's wrong but there you are - I'm far from perfect!) and by 'here' I actually meant where I was physically - at work, rather than here in the virtual world - I wouldn't like to think anyone thought I would consider my fellow forum users to be so heartless! And really I suppose it sounds unfair even to my colleagues. I meant, not that my co-workers think I should be over my mum's death, but rather I sense (some, not all of them) think I should be at the point now where I can function and work properly, which at the moment is far from the case. I feel like I've done well just to get our of bed and into the shower - then getting into the office is like a monumental achievement even before doing any actual work!

What you wrote about your boss Leila made me so angry. What a cold, unsympathetic person she must be. She has clearly never experienced the sort of thing you are going through. But anyone with the tiniest shred of empathy or human decency would treat you with more kindness and understanding. Someone capable of saying what she said to you, especially without ever having enquired after your dad's well-being shouldn't be a position where they manage colleagues. Is there anyone there who would be supportive? Do you have a personnel manager you can talk to? I hate the thought of you being so unsupported in the place you have to be so much of the time. Most people at my work as I said have been very kind - it was really just that one who was less so. Unfortunately she was in quite a powerful position.

Leila and Didge - you seem to be in a similar position, living so far away from your loved ones. That must be so hard to deal with on top of everything else. At least for the last year of her life I was just a five minute drive from my mum. Of course this just makes me feel even more guilty for all the times I could have been with her and wasn't. I have just spent a good hour re-living the first eight months after we moved into this house last year. This was the time before mum first got rushed into hospital and they diagnosed ulcers. Although it was another six weeks or so until she got the PC diagnosis she was never well enough to go out again. I've been re-imagining all the times I could have spent with her during those eight months. The whole point of moving here was to be close to mum and dad but I now feel I squandered that time - spent too long on settling in to the house, having friends stay for weekends etc (the previous house was almost too tiny to even have people for a meal comfortably, let alone stay so it was nice to be able to repay the compliment to friends we'd stayed with over the years) when I should have been making the most of being near mum and dad. It was never easy to do much because of the kidney failure and her lack of mobility but before we moved we'd talked about getting her a wheelchair once we were nearby so I could at least take her to the shops or to a teashop or whatever. We just never got around to it. I now wish I'd carved out some mother/daughter time just for us but because if the various health and family issues it was always the four of us together and I really regret not having more than the odd few minutes on my own with her. I'm looking out of the window at our lovely garden thinking about how much I'd give to be able to sit out there in the sun with my mum and have a chat. I think it's fair to say I'm wallowing today! I got through my first day yesterday without a huge crying fit - just welled up a few times but got it under control. Today the flood-gates seem to have opened again. I must stop feeling so sorry for myself...

You are both lovely, kind people and I thank you both from the bottom of my heart. Didge, you mention focusing on the positives. I hope that will come with time - so that I'm thinking more, 'at least I was with her at the very end', rather than 'I should have been with her more over her last few days', and 'at least we moved to be near them' rather than 'we could have spent more time with them once we moved'. At the moment everything is just a big stick to beat myself with but I guess it is early days.

You asked where I am Leila - I'm in Essex and commute into London for work. How about you?

Wondering if you both will be able to see dad/boyfriend soon? I do hope and I hope they remain as well as can be hoped for.

It's lovely to hear from such great people. I only wish I'd made better use of the forum whilst mum was still with us.

Take care and hope to speak soon. Susan xxx

[Guest]

Hi Susan,

Sorry for the late reply. Have been at work today. I've decided to only tell one person where I work about my dads progress. I'm sick of him being some gossip for others. No one genuinely cares, so they can feed their gossip elsewhere. Sick of them.

Sorry for the misunderstanding, see where you are coming from once I re read it.

Makes me angry also, reading about your work. I wish I could just leave. I really can't cope with people there anymore. I am sure you feel the same. I think maybe some of it, is possibly seeing them living their lives, without a care in the world. Laughing, joking, talking about stuff that doesn't matter? Does it make you angry?

How far did you move to be near your parents? You might not have seen your mum constantly, but you were there. 5 minute drive you say? Think of how much a relief that would have been to them. Whereever you were before, it wasn't a 5 minute drive. You might have had to plan to see them. When you moved, it didn't matter. You could have had friends over, so what? Your mum and dad had the comfort that you were close by, that they could call you whenever and you would be there, practically immediately. What a weight off their shoulders. Just that knowledge would have helped them so much. I hope you know this. Probably why your dad called you that day. He knew you could have left and been with them straight away. Your mum, I'm sure, would have thought about after she passed away. Another comfort for her, you can look after your dad, he isn't alone. It's things like this, which you probably haven't even thought about, but which means you were there for them. Do you see?

You are not feeling sorry for yourself. I have never once thought that. You're grieving. I cry at least once a day now, just thinking of him smiling when he sees me, breaks my heart. Knowing how scared he is and how much he doesn't want to die, will stay with me forever, it's all I see and hear when I close my eyes. A young girl that has just started working with us, she is only 19. Her dad dies of a brain tumour 3 years ago. She said you never get over it, you just learn to live with it, and she is only just learning. Be gentle on yourself. You have to grieve.

I live in Spalding, in Lincolnshire. My dad is in Nottinghamshire. I will be seeing him on Friday. I look forward to it, I miss him more and more every time I see him.

This forum is a great place. For me, it is the only place where people understand me. I am pleased I found it. Sometimes, it's all I have.

Take care Susan.

Leila xx

[Bookgirl2]

Hi Leila

Funny that you live in Spalding. My husband's dad lived there (he died a good few years ago, sadly I didn't know him) and my sister-in-law lives in Wigtoft.

So pleased that you're able to see your dad this week. You must both really be looking forward to it. Hope you have a lovely weekend (well, as lovely as can be of course under the circumstances). It's obvious from your posts how much you love him and I know it must tear you apart not being able to see more of him.

My work colleagues generally don't make me feel angry. Most of then are kind and understanding - I'm just aware that, sympathetic though they are, they also need me to do my job and that a month on they maybe think I should be performing better than I'm able to. They don't explicitly say that so it's maybe more me projecting that on to them - maybe I'm not being fair on them! I'm sorry you feel so unsupported at work. I'm sure due to her own experiences your new colleague would be a sympathetic ear.

We were forty five minutes drive from mum and dad before we moved so still relatively close but of course not so close that we could be there at the drop of a hat so yes, you're right I'm sure mum took comfort from that. I just wonder now if she might have wished for more. I know I have to stop beating myself up about stuff. This would be hard enough to deal with as it is without constantly blaming myself for anything and everything.

Anyway, will be thinking of you and wishing you well this weekend. Enjoy your precious time with your dad. He's lucky to have such a caring daughter and you're a real star spending so much helping me when you have so much got deal with yourself.

Take care and lots of love, Susan x

[Guest]

I come from Worksop, where my dad is. I moved here with my ex.

How are you feeling today?

What is your job? I work at a health and beauty place. I have always been a Solicitors Receptionist but got made redundant, that's why the change. My closest work colleague is the nicest to me, though I wouldn't have said we got along the most. The two girls I thought I got along with the most haven't shown the slightest interest. In fact one of them started singing yesterday, when I was on the phone to my dad. She knew I had been worried all day. They make me so frustrated.

Looking forward to seeing my dad tomorrow. I miss him so much. Wish he could put weight on, it breaks my heart to see him so vulnerable.

Sorry to ask a painful question, but where is your mum now? Is there a grave you can visit? Maybe if you went alone, said all the things you are feeling, maybe that could help?

Love

Leila xx

[Cathy]

Hi Susan

I haven't been here much and just read your post now.

As others have said, please please don't berate yourself. The truth is that really no-one knows. You asked earlier about juggling work and really there is no way to know. You know, I think about last year and that I was working from home 1 day a week to be with Jonathan, only towards the end of the year did I up that to two and the he declined quickly then. I have often thought, if only I'd worked more days from home earlier but then everything I did was done in the light of what I knew, or could ascertain at the time. We make decisions based upon the best of the information that is available. With PC the information isn't necessarily reliable. Take comfort in the thought, if you can, that you did the best you could and made the best decisions you could based on the information that was there.

We can all see that you were there for your Mum.

Thinking of you

Cathy xxx