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Losing Mum

It would have been Mum's birthday yesterday, instead I have her ashes in a tube stored away in a whicker basket in my bedroom. It's been 16 months and I still can't face the final part of letting go. It all happened so fast....a hoarse voice over new year that seemed to last too long. We all kept telling her to go to the doctor but she didn't (or did and kept it quiet). By the time a diagnosis finally came in May it was all too late....nobody said so, but we could tell from the consultants faces....Adenocarcinoma of the lung, inoperable and metastasized to the bones. She worked in a hospital and knew the score, didn't want to know how long and was prepared to go through treatment. Mum was living on her own in Yorkshire...her and Dad are separated....he lived about 10 miles away, I was down in Cambridgeshire and my brother in Cornwall. The plan was for Dad to help out as much as possible....that didn't work out very well as his alcoholism got the better of him. One time, she had mixed up her medication (she had loads) and was seeing spiders crawling all over her bedroom and speaking to people that weren't there....he was nowhere to be found...incommunicado...unforgiveable. So a change of plan, come to live with me or my brother...we'll care for you...she came to me on my birthday in July. The journey was hilarious in some respects...2 cars crammed with as many of her posessions as we could fit. Her back was so painful (she'd had one blast of radiotherapy to manage this but no other treatment at this point) that we had to lie the seat flat and pad it with cushions. I was dreading the drive in case I caused her any pain, but all I could see in her face was relief to be coming with me. We stopped for egg sandwiches at some services and laughed at the thought of Doug (my boyfriend at the time) following us in her very little car stuffed to the gills. I was glad to get her home....the room all painted and ready for her. It wasn't easy but we did it. The next challenge was getting her medical records switched from Yorkshire to Cambridgeshire...easy enough you would think? Not so, considering we live in such a technological age this turned out to be a farce! Many frustrating phonecalls, visits to the Dr (who insisted she come in in person despite her being bedridden) later it was eventually sorted and a course of chemo was agreed on. Chemo day came, it all went well and we went home. For the first few days Mum seemed to have got away with it, nothing major...day 4, disaster. I got up to help her get sorted as usual....she wasn't responsive...I checked her bloods as she is diabetic.....frighteningly low, temperature equally high. One emergency phone call later and 'derby and joan' turned up....2 of the oldest paramedics I've ever seen. Kind and well meaning but they seemed way out of their depth. In the back of the ambulance they sorted mum's sugar out and she came back enough to do lots of eye-rolling at their 'chuckle brother' shenannigans. At the hospital Mum was asked about end of life decisions....that was a shock...how naive was I? She actually asked me what she should do....my heart was breaking. Basically the chemo had completely crashed her immune system. She ended up in A&E and my brother travelled up from Cornwall. Unfortunately my Dad also decided to arrive on the train from yorkshire...drunk. Trying to keep your brother away from your dad so he doesn't punch his lights out is not easy and made for something out of 'Holby City'. All I wanted to be was at her side, not reasoning with 2 adult males. We had to sober Dad up so that he could go in and see her and try to keep the two 'men' apart. She was hooked up to machines and not conscious at all. The consultant in charge of the ward took me and my brother aside for a chat. He wanted to know what a woman with cancer this extensive was doing on his ward....that he was going to wean her off the machine breathing for her and she would do it for herself or die. I explained that she had been asked on admittance if she would like help breathing if things went wrong and she had said yes but that if her heart stopped she didn't want resuscitating. He patronisingly said 'she probably didn't know what she was agreeing to' - I took great pleasure in telling him that she was still actually on the books as a theatre nurse in a hospital up in Yorkshire and knew exactly what she was saying. I won't say what name I called him under my breath. My brother was on the Dr's side, but the nurse wasn't. Anyway, a week in intensive care and then on the oncology ward later she pulled through. I spent every hour there I could, watching x-factor, chatting, giving foot massages, anything to help pass the time for her. She didn't want to die in hospital and was literally itching to get out of there. Unfortunately things had to be sorted at home....hospital beds, equipment, carers to help me before she could make her escape. Eventually all was sorted...I'll never forget the look on her face when the ambulance brought her home....utter relief. So we settled into a routine....I'd get up, come down and help her get sorted before going to work, I came home for my lunch hour and straight home after work. Carers came in 4 times a day and my sons were home from uni for the summer so we had all bases covered. We had a couple of bed pan accidents that were quite comical. I always have been clumsy. We also had one spat...we had a walkie-talkie system where mum buzzed me if she needed me. Somehow she'd switched channel during the night so I didn't hear it buzz - I think she thought I was ignoring her or something and she was desperate for the bedpan. She snapped that I'd bitten off more than I could chew and that she shouldn't have come. I got upset saying that I wanted her there and couldn't bear the thought of her going through all this on her own up north....that I was glad she was here. I dumped her breakfast on the tray and went to work upset. When I came home at lunchtime she did something I never ever recall her doing....she apologised and said that she'd felt guilty all morning. We talked and I let her know that I understood her anger and that I was mad as hell on her behalf and that I loved her and wanted her with me. The inevitable hair loss happened at some point - it was getting on Mum's nerves falling out in clumps so she bullied me into clipping it all off...I hated doing that. We had some good times, watching rubbish tv together in her room, talked loads and laughed lots. We agreed menus of things to tempt her appetite and I cooked all kinds of soups and dishes. After the last chemo session, both Mum and the consultant agreed no more for her. Macmillan were coming in to help - they were brilliant, tweaking her meds to make her comfortable. We all discussed the DNR wishes - a hateful conversation but necessary. I was given a leaflet about what to expect when someone's dying....I didn't think I'd need that just yet so put it to one side. Talk about denial. I was home full time at this point, the boys had gone off to uni which was probably a good thing. Mum was turning the carers away more and more, they would show up and mum would say she was fine. I didn't mind, apart from being worried I would hurt her - she had a massive growth on her left shoulder by now that was hot and sore. Her arm and hand was also painfully swollen. Macmillan advised me gentle massage would help One day she got a bee in her bonnet about writing a will so I arranged for a solicitor to come to the house and left them to it - it made it all too real for me. When the solicitor had gone, she thanked me saying it was a weight off her mind. She was very tired and slept a lot that afternoon and I sat in the chair in her room listening to her breathing. All she wanted for dinner was ice cream and an early night. She buzzed me that night, about 1 a.m - I woke up and went down to see what she needed. She wanted to watch t.v. She seemed a bit restless and grumbled 'you stink of garlic' We tried to find something on t.v but nothing was on...all I could think of was how tired I was and how I wanted to get back to bed...I asked if there was anything else she needed. She dismissed me so I went back to bed. The next morning, the buzzer didn't sound...I remember having that ominous feeling as I walked down the stairs to her room. She had died...gone...no fond farewells like in the movies. After everything over the past few months, I let her down when she needed me the most. They say that you always regret the things you don't do the most, and it doesn't matter how much friends and family reassure me that I did lots for mum, I wasn't there at the end and that's unforgiveable.
Jillybean42 Jillybean42 41-45, F 4 Responses Jan 26, 2013

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i lost my mother to cancer 4 weeks ago,and i no how hard it is,i was like you and done everything i could do for my mum and had gone to bed at her house and she died within minutes of me going to bed.the truth is cancer carries a lot of pain and the person dying from it always waits until theyre on their own to pass away,its sort of their way of protecting us and having their last bit of making their own choice,i think its how they wanted to do it,and being a mother myself id proberebly do it the same,would you.

Sorry and Hugs! I lost my mother to cancer 13 years ago. It still hurts. My suggestion is writing in a journal. It helps. Even just writing your story on here will help relieve some of that stress your feeling. Seek God to help you with your pain. Hugs and prayers. Amen

Jillybean42, I really admire you to the core. My mother passed away 9 years today and the pain is still here, more vibrant than ever. 9 years I said yes, this emptiness, never goes away, today I didn't know where to find the strength to come to work, get my girls ready for school and go on with my day because this sadness is just here with me. My Mom had lung cancer and I was not able to be there for her, I wish I could have had the opportunity to give my Mom half of what you gave to yours because I was young stubborn and had moved to another country with the love of my life (at least we are still together), we went to the first 3 sessions of chemo together but the last three I wasn't there for her. And don't get me wrong I don't feel I'm a bad person but when I left my home at 19 I was thinking life was going to give me the opportunity to have a better life in a new country and bring my Mom with me, everything just happened way too fast. I couldn't spend her last xmas together because I didn't have enough money to support me and fly to where she was and keep my job, so silly because at the end it was all gone, once she was gone. I don't know how or when I'll feel better, perhaps when will I stop feeling guilty about her death. All I know is that reading your lines gave me hope because I knew I was not alone. Thank you for sharing and feel proud of yourself please.The bad daughter...

Let me start off by saying I know exactly how you feel. I was taking care of my mother who was dying from end-stage kidney disease, and heart disease. She had recently been put into a rehabilitation center for amputation of her foot, due to her diabetes. I was always there for her when she was had to be taken to the hospital, and was with her for 7 hours the morning the day she died. I had gone home to get some sleep, when they called 5 hours later and told me to get back to the hospital right away. I didn't make it back in time and she was dead before I got there. I still blame myself to this day for not being there for her at the end, even though all my friends and family say there was nothing I could have done and I should be proud of taking care of her. The guilt and depression still haunt me, I blame myself for not doing more and being there with her at the end. I know she is better off now in Heaven, not suffering or in pain anymore. The only other thing I can say is talk to someone and get help, don't let the depression and guilt take over your life. Your mom wouldn't want you to spend the rest of your life blaming yourself, for something you had no control over.