Shedding the coat of a carer

Hi,

I did not have as long caring for my husband, he died within 6 months. But I do remember the feeling of watching him loose himself and us at the end when the cancer had started shutting him down. I cannot imagine how hard it was for you over such a long period loosing him bit by bit.

We all grieve so differently. Although there are loads of books etc to help, there are no perfect manuals that tell you what you should be feeling or how to do it. It is important for each of us to do it our way. You may not feel like you are grieving but the process has started. There is so much loss relating to death not just the person but our former lives as well. I found myself like a rabbit in the headlights. 3 years on the grieving is still there but I have learnt to accommodate and deal with it, I so wish I had the answer for you. My only advice is do it your way, in your time.

Hi Ard 2014. My hubby John had an accident at work in 2010. I often wonder if this brought on his cancer.  He never worked again due to knee damage. I continued working and for 4 yrs it was agony. We would be sat on the end of the bed early hours most nights crying. Him in pain, me cos I couldn't help and also as I was due up for work at half five. In 2014 he had both knees replaced, so were relieved by Xmas thinking the worst was over after all that strife, operation & nursing. The following year 2015 he got a bowel cancer diagnosis saying it had been there at least 2 yrs and was more than 50% of his bowel. He had 2 major surgeries & rigourous chemo which all failed so the caring tore on until he died in early 2019. My daughter Lolly and I worked full time but did alternate shifts to care for him. It was gruelling & the experience towards the end but before he had to go in a hospice (which we all hated...& I never use the word hate lightly) was truly horrible. Your role does alter significantly you are still a wife underneath there just as I was. Lolly was still his little girl....but her role changed even more because doing intimate medicines & showering her dad when I wasn't there, is another level. Grief is entirely your own realm Ard2014....there will be times when you look at your caring role and the grief will follow that river of blurb...did I do this right...why did I get that wrong....I was glad I did xxx. On the other hand you were ULTIMATELY a wife...HIS wife and his wife for much longer than you were his carer. I think of it as being his 'sharer' in some respects because we were on a journey together. Ok different experiences and outcome, but it was an unwanted path and horrible for us both but in different ways.  Often I think of the man I loved....his touch....his velvet dark brown eyes....his laugh....wisdom...his smell and touch.  I sometimes put aftershave on his hanky. I have other techniques as well to draw me to him. It could be that bad memories are uppermost, and lets face it....the coat of carer as you put it...is not a garmet easily worn. My darling John was 64. He was just 15 mth short of state retirement when our time to shine was imminent....It is about how pliable your grief is in its ability to let you focus on your husband rather than your patient.....for me yes the pain of all the caring, ethe exhaustion, the mental battles etc are bad....but the loss of John as a unique human being and more importantly...my husband and father of our kids....never leaves me. I hope this helps in terms of giving you a different persepective lovey. Best wishes xxx

It seems many of us here are about the same age.My husband and I worked so hard all our adult life and were so looking forward to retirement.My husband died in November 2021,finally getting his state pension in January 2021,but was already in the throws of chemotherapy by then.Having been furloughed in March 2020 and then made redundant and like us all locked down and unable to see our grandchildren,go on holiday or really be able to make memories in that time,I feel really cheated.We didn’t get to enjoy any of our retirement together and yes,like you I was my husbands carer,loosing him day by day to this awful disease.I can’t yet get past the horrible memories of his last few months, I have just started bereavement counselling and hope I can get to a stage where I can remember the rest of our happy forty years and hopefully talk about those happy memories.

Hello Ard2014,

I am so sorry for your loss and I'm glad you've decided to join this group as we all here share similar experiences and, after having been a member of this group for more than three years, and from what I read from the other members, I know that it is so helpful to share on here.

And I know exactly what you are saying. When my husband died in May of 2018, after I had been his carer for 10 months at least, I didn't know what to do with myself; I had been his carer for so long, I could not suddenly turn into the young widow. I also found that I had all of a sudden nothing to do anymore. It was such a feeling of complete emptiness. It will take some time to get put on the new coat...

Lots of love X

Hi MelanieL. I agree with much of what you say. I don't like 'moving on', but nor any kind of moving.  We don't all need or want to'move'/ The world turns but doesn't mean 'living' for all of us. Some choose to, but its ok just 'to be'.I got cancer as my hubby was dying. I delayed treatment 7 mth as our grandson, 3, was also dying, followed by more deaths & other bad stuff. so my cancer spread & I am now disabled. Existence continues & that will do me. I don't hurt anyone. I know how to pacify others, so I hurt no one. I don't have a big network anyway. I live alone. I have distractions; I write daily to hubby(now on notebook 7), I write poetry, draw/paint, knit a bit, read, scroll round tv etc. People don't exactly stay alive in our hearts & minds as the business of 'living' eventually means we only think of them now & then...they are no longer part of our world. This world only ever did me one favour & that was to give me my soulmate. Now it has taken him after a very difficult if love filled life, I feel ok with the place where I sit. Yes I feel very cheated & bitter, but I feel him near me every single day. Society wants everyone to conform by grasping what is considered to be a 'life'...thats ok if you want it....but if you don't, thats ok too. I wish for you all the best after your horrible experience and sad loss. xxx

Hi,

I cared for my husband Pete he was 64 when he passed in October 2021.  Since he finished his chemotherapy at the end of February that year Pete began to go down hill. towards the end l was not able to rest or sleep properly incase he fell off the bed stopped breathing, had an accident with his stoma it was heart breaking:( Pete was diagnosed with bowel cancer in December 2016 and then in February of 2020 was diagnosed with stage 4 secondary lung cancer. I know that it is hard when you have cared for them, because your every waking moment is about them. I personally think that from the advice l have had from some lovely people, from this site, we all grieve in different ways and that no way is wrong. We just have to find away that hopefully can help us, l am still looking for mine, but joining this group is helpig me xx

xx

I am so glad you are finding something from this site. I went through a bad patch & came off the site, hence the long absence. John was also 64 when he died 23 Feb 2019. He went through 2 gruelling surgeries a=& chemo. It spread to his abdomen wall then all across his internal organs. His abdomen became so swollen I thought it would burst. As an ex athlete - body building from age 13 till his 40's, and road running (in plimsoles at first & then marathons even before medals - this hit him hard. It was so bad he was vomiting faeces, a sticky black gunge that flung all over the bed. I tried to get medical help but no one would believe me so I videod it and when I showed it a senior nurse I got told off for not asking for help earlier !!!! Daughter & I were working opposite shifts so he was rarely alone & doing up to a dozen lots of bedding a day on top of everything else. The worst bit was a suspicion that the cancer had gone to his brain which I was told is rar for bowel cancer. It meant that he said some things out of character but alos could not respond. He lost the power of speech in the last few days which broke my heart. Just beforehand, after knowing Id had a lump ages, I got diagnosed & wrestled with whether to tell him or not....he was struggling to talk but he managed one thing when I told him. He said "Well, we always do everything together" & managed a little smile....but there were no real meaningful sentences after that. In the last days his weight plumeted & yet he was such a dead weight, I couldn't even lift his head or shoulders off the bed to cuddle him. I did manage to lie beside him though, but no thanks to the hospice or any of its staff. I think it isn't just the injustice and cruelty of death, but if the journey is unkind for one or both of you that too has a profound effect as well. Our little grandson shares his coffin with John at least, so they are neighter one alone....We had 11 years of hell through different things, including John's death....bad things do not stop just because you already have the worst one ongoing! You are absolutely right that no way of grieving is wrong. But also, some must accept there is no partivular 'way' ahead to help us. I suppose it mirrors life....everyone is unique, every journey is unique...every fingerprint unique. ...so I have stopped searching for something I think may not exist. I open my eyes, I do the necessities and see how things unfold after that. Big hugs to anyone who needs them...I only genuinely wish they were real because THAT is a hugely beneficial act. xxx Val

xx

Hi,

Just to say that I did care for my wife on my own until the end. Things got worse quickly by the end and she died a few hours later after a nurse came to ask me how she could accommodate our home to make her end of life easier..  the night before I had been googling "what to do when someone dies at home", Ive been carrying all that on my own and it was really hard to shed that carer coat afterwards (it's been a year and a half since Juliette's passing). I can't help but care for others, my daughters, friends, etc. Trying to spread as much joy and hope around me, because if I isolate and try to care just for myself, I can't cope with the loneliness.

Long story short, I guess everybody's story is different, but when you've been the carer of your loved one, it's not something you can brush away quickly. But it's fine. This is a traumatic experience that made us care more. I want to care more, focus on the good things and people. I think the whole world could benefit from a bit more of compassion.

Take care Xx

Antoine