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 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.
LostSoul xxx
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.
LSxx
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
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.
Maz xxx
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
Hi
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
That has helped - the little bits & pieces in pockets made me smile. Good luck
Tomorrow is my birthday it will be the first time in 36 years that I won’t have my husband with me he passed away in November .
I am sitting writing this in my house on my own with tears running down my face and my heart is just broken I just want him back I don’t think I can do this with out him I walk everyday as I live next to the beach because it’s what I did with my husband .
Everyday it just gets harder god I just want him with me holding me telling me it’s ok pet it’s going to be ok .
I don’t know how to deal with this pain any more .
Lily
Lily, you are not alone. All I want is to have my husband back, and I am almost over the edge with grief. Still waiting for Cruse to start counselling me although I doubt if anything will make me feel better. Where do we go from here? Even going into Tesco makes me cry when I see all the things he used to love. I hope you will get through your birthday all right. The next hurdle is Valentine’s Day. Even after being married for 66 years, we still gave each other a card. But not this year. I still have the first one he gave me back in 1949. Take care. Warmest regards.
Eileen xx
Dear Lily and Virgo
I can’t tell you how much this resonates with me. Really I’ve considered doing away with myself on several occasions, but frankly not sure how to go about it. In many ways I wish it had been me who had been stricken, but of course I wouldn’t wish what we are going through on my husband, either. Everyone tells me that humans are by nature survivors (if we weren’t then the human race would have collapsed aeons ago), and that we just have to try to move forward. They all say that time is the key … but of course most of the people saying this are people who haven’t been through anything like this themselves … . Today I was really upset because the woman on the checkout in the supermarket remarked on my engagement ring. I just kept thinking how much I’d love to throw it, with everything else I own, down the nearest drain in return for my husband back … Big hugs to you both. We have to be courageous - we have no choice, but - boy - it’s SOO hard … xx
So sad for you Lily & sending you a big hug. I have lost count of the times I’ve asked my husband to come back. We loved footpath walking and going to the seaside but after nearly 7 years, I still can’t do those walks.There is no easy answer and I scare myself knowing this is what I have to face untill my time. Maz xx
Hi to you all for replying thank you .
I don’t know how a heart is supposed to endure all this pain I just keep saying to my self he was a good man a loving man a gentleman he never hurt anyone in his life he cared for people he was so so loving I just ask why god I’m so sorry I can’t do this the pain is so overwhelming I just can’t it hurts to much I just need him with me I’m sorry it hurts to much .
Lily
I am so saddened to read all the new letters on this forum. It’s not the right word but it’s comforting to know we are not alone with our fears and traumatic experiences. When my husband died I felt so bad and ill. Not in the conventional way but the feelings were ones I had never experienced before. I just wanted someone to feel my pain. There were no words to describe the devastation I felt. I was distraught most of the time. A hundred years ago I would have been committed. The first two xmases, my worst time of year, I tried to go, but I failed. I can only say that time does soften the pain. Joining support groups can help, counselling can help, but the only way to survive comes from strength within.I have the utmost understanding for those who can’t take the pain and chose a way out. It is not easy or cowardly to do so. Support is the most important thing. Maz xx
I too am saddened at how devastated everyone is on here. I could never take my own life because of my family but every night I pray that my dodgy heart will stop whilst I am asleep. Then, every morning I wake up to face another difficult day. The fact that it is January doesn’t help, as I have always been a bit depressed during the winter. There is no good advice I can offer anyone as I cannot deal with this myself. I am pinning my hopes on feeling a bit better come summer but who knows ? Longer days and warmer weather won’t bring my husband back to me. Big hugs to all of you. Eileen