Hello everyone. I’m new here and it’s the first time I have ever joined an online community so not sure how it works. My husband died in mid-October after a long struggle with a brain tumour. This has to be one of the worst ways to go, in that the person you knew and loved disappears before your eyes and every day brings with it something else they are unable to do. I looked after him at home until the end with support from community nurses and the GP. During this time I became quite ill myself from the extreme worry and stress as I knew the outcome right from the time of his diagnosis, which was some 20 months before he died. I now feel extremely traumatised, which everyone assures me is normal, but I can’t seem to get the images of his final few weeks out of my head, and have problems remembering him the way he was before he was ill. My GP assures me that this is a ‘normal’ part of the process, but since I’ve never been here before I don’t know. Has anyone else been through this in terms of nursing a terminally ill relative at home? If so, how did you cope afterwards where everything in the house reminds you of the horror you both went through? I now live alone, so I can’t alwasy share these feelings.
Hello LostSoul, I am so terribly sorry for what you are going through and for what you will go through for a long time to come. My husband died just over three years ago at the age of 68. He started being ill eight years before he died so it was a gradual decline of his health but three years before he died his health declined even more so I became his 24/7 carer, doing everything for him. My hair fell out, I had chest pains and other aches and pains but the specialist put it all down to stress. My husband would not have anyone else look after him, even for a few hours as he was afraid if he had a problem with his oxygen they would not know what to do so I didn’t go out, if I had an hospital appointment I took my husband with me in his wheelchair together with his oxygen and portable Nebuliser, he was happy to do that as if there was a problem he would be in the hospital and doctors would help him. I had promised my husband that until I had breath in my body I would not put him in a care home and I kept my promise, he was rushed into hospital on a Friday evening and he died Saturday afternoon exactly 50 years to the day I met him. Even though we had some terrible times and emergencies during the final two years of his life, when I remember him now I see him as the young man I met and fell in love with, but everything is in Black and White. When I close my eyes the first image of my husband is when he was 18 years old with his arm around me stood outside my mum and dad’s house in 1964. I have to really think about the last few years of his life so I think I have blotted them out in a way and only remember the good times. I also now live alone but even with the terrible last two/three years of my husband’s life I still find comfort being in the home we lived in and raised our children in for so many years and I would never want to be anywhere else. I have his photos all around the house, still have all his books, records, CD’s, and even the pictures on the wall he hung many years ago, our sons say ‘why don’t you put some new ones up mum’, I say why, ‘they are still lovely pictures so why would I change them’. I love my home and as long as I am able, I will never leave it. I do hope in time to come you will find peace but even after three years I still grieve for the man I loved for most of my life. Sheila xx
Hello Lonely. It sounds as if you went through a terrible time, too. I am sorry to hear it. Like you, my hair has fallen out, and I have an awful skin problem all over my face. My GP also says it’s stress and the fact that I just didn’t bother to eat. My husband was also only 68, and I am sure, like me, you feel as if you have been robbed. He hadn’t even retired … . I know exactly what you mean about not being able to leave him - I used to race around the supermarket just so that I could get back home as soon as possible. I did have full-time carers for the last six weeks, but actually found them even more stressful than trying to do it all myself. I was just so exhausted by that point that I just couldn’t cope with having strangers in the house, either.
One thing I do envy you is that you had your husband for 50 years. We had been married only 10 - and the last two of those were blighted by his illness.
I do hope I am able in time to blot out the trauma and remember him as he was when I married him … but it’s so hard at the moment, as I am sure you will remember.
Like you, I intend to keep all his ‘stuff’ (and he was big on ‘stuff’!) intact.
I think one alwasy grieves for those one has lost, really. I still miss my Mum and Dad, and they are long gone. I could do with them now …
I sometimes think the only solution is not to allow oneself to love anybody, but being human we can’t really avoid it.
Thank you for replying.
Hello LostSoul, Yes, we were so very lucky, we had 50 wonderful years together and even though he was ill for eight of them he was still with me and we could sit together on an evening. From what you say your husband was ‘big on stuff’ which sounds like my husband, he would not throw anything away, from a model railway in the spare bedroom, to large models of Cadillac’s in our display cabinet, boys and their toys I used to say. I still have them boxed up in our wardrobe. We have all the LP’s from the 1950’s onward’s and 45 rpm vinyls. I am so sorry you did not have long with your husband and when so-called well meaning people say to you as they do all the time to me, ‘well at least you have your memories’, do what I do, tell them you don’t want damned memories, you want your husband back, that shut’s them up. Who would choose to have memories over having your loved one back. I find that it is people who have not suffered the loss of their partner who say this to me. Take care. Sheilax
I do so agree with you about the daft and tactless things that people say … I get the feeling that in my circle of friends and acquaintances, people are often at a loss as to what to say, and many of them don’t want the inevitable reminder that one day this might happen to them, too. You are so right in saying that no-one can know the pain of this unless they’ve actually experienced it. It’s nothing like losing your parents. That’s sad, of course, but usually your life is not intimately bound up with theirs the way it is with your husband. We don’t call them our ‘other halves’ for nothing …
I agree about the memories. I was only looking forward to making more of them, and thinking about them when I was 90 … not now.
My husband was a big 1950s and 60s music fan, too. I used to threaten to put him up for ‘Mastermind’ on it …!
I shan’t be chucking anything out, either.
We loved the 50’s/60’s music. Even now, I sit in the garden in summer with my headphone’s on playing our music. Whereas Peter also loved Blues and Soul and certain country and western songs but it was always rock ‘n’ roll for me. I have seen the Beatles, Rolling Stones and other 60’s pop groups live in the 1960’s before I met Peter, and I have a photo of me in my tight trousers and flat ballerinas at a rock-n-roll night with my beehive hair-do when I won the jive competition. So many years have passed it is hard to believe we were ever so young. I wish I had a time machine.
My husband was a big Elvis fan (or fanatic, actually). I have so many Elvis records and CDs I could start a shop. But of course I can’t bear to play any of them at the moment … . As for a time machine - yes - I’d go back to before he became ill and freeze it right there. I still hope that all this is a nightmare and one day I shall wake up and everything will be OK again … Sleep tight, Sheila. x
Every single one of us on this forum wants the very same thing, our loved ones back but the heartbreaking thing about it all is that we can’t and that is what hurts the most. Love Sheilaxx
Hello my wife passed away on March aged 48 after a five year fight with breast cancer it went to her bones and then to her brain it the most awful thing losing your soul mate
Alan I am so sorry to hear of this - and 48 is in the prime of life. And being ill since the age of 43 must have been so hard for you both. My husband was ill for 20 months so I know something of what you must have suffered. The problem is that you get more and more unwell yourself, so bereavement is even harder. I often wonder how people cope when their loved ones die suddenly, and perhaps they are more equipped to deal with it since they are not already on their knees with exhaustion. Like me, you will be having your first Christmas without your soul mate. It will be hard, but I hope you have some friends or family around to help you get through it. I just can’t wait for it to be over. LSx
It is so sad reading all this, I lost my first husband suddenly at the age of 38, a policeman at the door told me he had died. I lost my second husband at the age of 61, to a brain tumour, it was much harder at the time seeing him deteriorate than the trauma of losing my first husband. I had a stroke 7 weeks after losing him and the doctors put it down to the stress of caring for him for 22 months, this was 5 years ago and I thought it was probably the worst thing that could happen to me, but unfortunately not, my son, passed away very suddenly 14 months ago from SADS he was only 37. Perhaps because he was my son and not the natural order of things I am finding this even harder to cope with, so perhaps sudden death isn’t easier. I’m not so sure now.
Sending Lost Soul, Lonely and the others a big hug. I have sympathy and empathy with all of you.My husband, aged 66, died almost 7 years ago from prostate cancer which had spread to bowel, liver and kidneys. To watch the one you love deteriorate and become more helpless is soul destroying. At the time, you do all you can to nurse and help, naively thinking you might be saving their life. I was never told how bad things were and that I was fighting a losing battle. You are awake almost 24 hours a day listening out for your loved one. It does affect your own health, eventually. With me it was psoriasis. Mentally, I’m still not 100% and I have flashbacks as clear as yesterday. Counselling helps, if you get the right councellor.
Dear Maz, thank you for your lovely comment. I totally agree with you, it is 3 years and four months for me, my husband was 68 when he died and diagnosed with COPD when he was 60, for the first five years we still managed to get out and about, taking holidays in the UK as he was not allowed to fly due to oxygen levels, but we still enjoyed our few days in Blackpool, Scarborough, the Lakes etc. but the final three years were horrendous.
The specialist told us that COPD was an illness that no-one could say how long someone had left to live, it all depended on the infections a person got, i.e. pneumonia most of all and which my husband had many times, so in fact, for years we were living on a day to day basis wondering if his latest infection would be his last one and it would be all over. I used to wake up in the morning and turn to my husband and breathe a sigh of relief when I heard him breathing because I knew I had another day with him.
I looked after my husband 24 hours a day for the final three years as he would not let anyone else near him, not even our sons, he was a proud man and did not want anyone to see the man he had now become. When our son’s visited us, they never knew how long it took to get him ready for their visit so he would be sat smiling when they walked through the door, they only found out how bad it was the last 4 weeks of his life. My hair started to fall out so I bought a wig identical to my colour and style and no-one guessed it was a wig, my husband never knew when I was wearing it.
I slept with my husband in our marriage bed right up until the end so I could be there when he could not breathe, for 12 months after my husband had died, I woke every night to him calling my name, jumping out of bed before I realised he was no longer there, then the tears started again.
Even now, I only have to think about my 6 ft 4 ins. tall, handsome boyfriend when he was 18 years old, for the sobbing to start again, how can we be so young, in love with all our future facing us and end up like this, broken hearted, old and alone.
I will never get over losing him, my life is not worth living without him, I have sons and grandchildren but they can’t fill the void there now is. I honestly wish I had died with him and the pain would now be over. Our son’s don’t need me and I don’t want to become a burden if I get seriously ill.
I have really tried to move on with my life but nothing excites me anymore, I am soon to become a grandma again and all I can think of is that Peter won’t be here to see him/her and it hurts. He worked so hard to give us a comfortable lifestyle and to ensure when we retired we would be nicely off but now I am alone, what use is money, I would give it all up to have him back with me.
Thank you once again for your lovely comments and know you are not alone in your sadness.
Love Sheila (Lonely)xx
Hello Everyone. Maz I know exactly what you mean. I nursed my husband for 20 months, my hair fell out, I got psoriasis all round my eyes and mouth and I lost 40lbs in weight. Three months on I am skinny, jumpy, anxious, sad, panicky and bereft. Like you I also have awful flashbacks to the last terrilble months. So far I have relied on friends for counselling, but perhaps this isn’t enough. I sometimes think the most awful thing was not that he died, but the manner in which it happened. No-one deserves that. I am so sorry everyone on this board is having such a terrible time, but I suppose it does help to know that one is not alone. xx
Dear Lost Soul,
I am so sorry for your loss, it is never easy to see your loved one weaken and deteriorate in front of your eyes. My wife of 34 years passed away after a long illness in July 2017. I was her sole full time carer, I too could not get rid of the final images of my wife approaching her death. I could not eat, sleep or concentrate for a long time. The doctors wanted to prescribe sedatives, however I was referred to a councillor from our local hospice who helped me tremendously, I found talking to a specialist worked lot better than any medication. To feel extremely traumatised is part of grieving process, therefore talking is good medicine. I have gone through what you are going through, I too looked after and cared for my wife 24/7, as my councillor told me try and forget the horrors (not easy) and try to pick some positive and happy moments and concentrate on them. I would seriously consider to visit your local Hospice. I wish you very best
Kind Regards MAC Des
Thank you, Mac Des. I feel for you, too. Sadly I don’t live in the UK, and in France here there is no such thing as a hospice movement. Also all the counselling offered would be in French. Although my French is OK for the day-to-day, it would not be good enough to express all the nuances of grief and bereavement. So … I rely on friends who (as you will know) vary in their ability to understand. I don’t think anyone who isn’t a trained professional really ‘gets it’ unless they’ve been through it themselves - and even then we are all different in the way we react to such trauma. I do talk about it, but some of the images I retain would be very hard for others to hear. Forgetting them is much easier said than done. I try to keep out of the part of the house where all this took place, but I know it’s there and am constantly haunted. Like you I was a sole full-time carer, but I did have nurses coming in twice a day to help with things. I often think that all this was the worst possible nightmare, and one day I shall wake and discover that’s all it was … I wish you well, Mac Des, you are a bit further along the journey than I. Please keep in touch with us all. xx
Although my wife died suddenly in hospital we had talked about my life after her passing. In terms of the house I did push myself to avoid it becoming a memorial. I moved things around and created a cosy corner overlooking the garden. I have redecorated our bedroom . Waht I feel I have achived is to move my wife’s prescnce to my emotional space and I know ,because we talked that she would have done the same. I also have a Post it Note on the kitchen wall in plain view with WWPS ? WWPD? What would Pat say? What would Pat do? When I need to think I look and consider those letters . Often I engage in ‘conversation’ with her
Hello bobt, I am sorry for your loss.
I did exactly the same as you, my husband Peter, who died just over three years ago aged 68, I was 71, and he had been ill for eight years but refused to discuss anything, as far as he was concerned he would get well, even though we knew we were living on a day to day basis and his next infection could be his last one.
I knew he wanted cremating as it was added to our wills many years ago but as for anything else he refused to discuss his illness, I wanted on so many occasions to tell him how much I loved him and say thank you for everything he had done for us, for being a fantastic husband and father, (words I should have said to him many years before) but we were young and in love and with children we just got on with our lives and assumed we both knew how each one felt about one another. When I tried to broach the subject he just said, I don’t want to discuss it.
After he died, I decided to put the house to rights, for eight years things had been neglected, if Peter could not do them himself, they didn’t get done. We paid for everything doing outside the house but inside things were falling apart, door hinges were loose, central heating stopped working but he would not let anyone come and repair them. We bought convector heaters and our heating bills were £500 per month but he still refused to have things repaired. Our carpets and sofas were getting worn with the oxygen tanks and the comings and goings of paramedics, nurses and doctors and for the past three years it was so hard. I was his 24/7 carer, and it took it’s toll on me but I promised him until there was no breath left in my body I would care for him at home and I did.
In the January a few months after he died and all the paper work was sorted out, I got in a decorator, joiner, gas central heating company, carpet fitters and put the house to rights, I bought new sofas, curtains and gave a lot of things to charity. I now have a lovely home again, mostly all brand new things but I still have all my husbands books, records, CD’s. cassettes and videos from the 1960’s. They still have pride of place in the record cabinet and book shelf. I kept all his clothes until last summer, three years after his death, just in case he came home again (which was stupid, I know), then I gave them to charity. Sorting through the pockets of his clothes made me laugh and cry, polo mints, bus tickets, train tickets, combs, tissues etc. I still kept his new sports jacket, trousers, shirt from his clothes collection. What hurt was packing up all the clothes he had never worn, still with the price tag on them.
I will never, ever get over him not being here, we lived in this house for 44 years and brought up our children here. Our sons love the fact that when they visit me and stay over, they think of it as coming home as all their memories are here, if I moved to somewhere smaller in another area, I would be more broken-hearted than I am now because he is still here, I can look out into the garden, close my eyes and see my husband standing there, playing ball with our GSD Barney (he died in July, last year), they are both now together. Our eldest son is the double of his dad, and our next door neighbour told me that once she saw our son in the front garden and nearly had a heart attack as she thought it was my husband Peter. Our son takes me on holiday each year, just the two of us for a few days and it is like going with my late husband, they have the same sense of humour, like the same kind of things and he plans the holiday for us to do things just like his dad did, it is uncanny. Our other son is like me and is the double of my dad.
I get through each day, doing things I like, go into town once or twice a week, but love to watch films, I still cannot sit and read a book from beginning to end as I cannot concentrate, but I am getting there. I still have Peter’s ashes and talk to him every day.
Life is and will never be the same ever again, I lost the one person I have loved for most of my life and it hurts, it hurts a lot.
Sorry for rambling on.
That has helped - the little bits & pieces in pockets made me smile. Good luck