My name is Katy,I lost my husband Simon in April,we were married for 22 years,was his carer for 12 years, he was 47,since I lost him I have been struggling,I have lost most of my friends and main support would have been my Mum but she got ill with dementia last year and is in a home,I have just been diagnosed with PTSD
Hi Katy - I lost my husband early in july , we had been married for 29 years and I had been caring for,him intensively for four years - although his death was totally unexpected.
I am so sorry to,hear of your loss, because I was caring for him I felt as though I lost two people when he died, the man I loved and who was my husband and independent, but also the lovely man who I loved who had become dependent on me . And who was the focus of all,my days . I wonder if you can relate to this?
Sandra and Katie
Thank you for your posts
I was carer to my husband for 20 years so as you mention there is an extra loss to deal with and process.
I lost the love of my life, my soul mate and confident who made me laugh and knew me like no one else and I lost my role in life/ my purpose which along with working to earn income was to take care of him.
I showered him thousands of times (literally) and shaved him daily and never was bored. It delighted me to make him look and feel fully human when he was unable to do anything for himself. I fed him, took him out and was his hands to enable him but I never thought of him as disabled as he was so alive and full of fun and humour. He was popular wherever we went because of his upbeat attitude but as many of you have mentioned on this site his passing meant the loss of so many ‘friends’ - they simply vanished. This makes me feel like I was just an appendage and not a person in my own right.
We could not hold hands or go for walks but we managed and travelled widely in spite of the challenges - electric wheelchairs, hoists and commodes accompanied us. We had a ball until the last months which were so tough.
So I have lost him but also my reason for living which was to look after him and in spite of the total lack of support from medics etc we survived. Now each day is full of nothing.
People think I must be relieved not to have to do all I did day after day, so now I am apparently ‘free’ but I dont want to be ‘free’ I want the love of my life back and I loved doing the care. It was just an expression of my love for him not a burden.
So thank you Katy and Sandra for raising this and thank you everyone else on the site you have helped me so mauch over recent months with your honesty. To read the words that express how many of us feel is so comforting and assures us that we are not alone, or failing to ‘get over it’ but quite normal and just bereaved and grief stricken with no end date,
Thank you all so much. Not sure how I would have coped without knowing you are all out there.
Hi Katy and Sandra
I also looked after my husband for 3 years before cancer took him last September. I have found it hard as looking after him was my sole focus and our time was filled with nurses visits and hospital appointments and the worry of it all. When he died everyone goes and you are just left to pick up the pieces.
Sandra when you say you feel like you are grieving two people it certainly struck a chord with me. I can definitely relate to that.
Hugs to you both xx
Hi Sandra, thank you for responding to my message,I am so sorry for your loss, I know exactly what you are going through,I even miss looking after him,I felt like that too,I am still in disbelief about everything,I am here if you need to talk
I am so sorry for your loss Barbara,I know how hard it was,I even miss looking after Simon right now I would do it all over again,I feel like I have lost two people too,if you ever want to talk I will
I am so sorry for your loss,I miss look after my husband too, I would do anything to get him back,I am in disbelief I miss him terribly wound do anything to get him home
I understand and relate to all of you. My heart aches for my lovely, funny husband. He is in my thoughts 24/7 and I still can’t believe he has gone.x
Thank you for replying to this post. Rowans - everything you say is exactly how i feel too.
I was privileged and happy to be able to,provide care and nursing for my wonderful husband. It enabled us to be together and be happy together at home and with friends when otherwise we would have been separated by his condition.
He was peg fed, hoisted, used commode, had electric bed and turning mattress - and other issues - all due to a brain haemorrhage type stroke and a period on a ventilator in icu , which he survived .
It was an absolute joy to look after him and be together, I carried on working too but due to covid that was from home for the past two years so we had extra time together. I did employ a personal assistant for him too to help with some things. But a lot I did myself .
Like you people have said to me “oh what a merciful relief for you both” “well done you can have some me time “. Etc etc
There is nothing I want to do except to,have him back with his beautiful smile , he was so happy every day, a different life for us from before but one where he (and I ) found much happiness In Simpler things and just being together.
I miss him so very much, he was my focus every day and that was exactly how I wanted.
I used to tell him how happy I was and lucky to have him every day and he was happy too.
I have no purpose to my days now and no reason for being.
I would love to chat more with people like yourself who were also caring for a partner. It’s a whole extra layer to,the grief I think
Please feel free to message me or reply on here
Hi Barbara thanks for replying
Yes like you our days were filled, not only with just living and enjoying being together, but consultants visits, calls to,doctors, general medical procedures that I needed to do for him several times a day, visits from his personal assistant etc.
We did it all cheerfully and thankfully (on my part) as I was just grateful to have him with me. Every day.
Now all my focus has gone, the days so full before with never a minute to spare are empty.
And yes, I have lost two,people , the husband - and the dependent equally loved man who I looked after. My entire family really
It’s good to talk to other people who have cared for their partner
Hi Katy, I am so sorry for your loss. Many of us will tell you that after a loss and the busyness of dealing with the practical side of it, our so called friends seem to disappear and we are left, if we are lucky, with one or two good friends, though usually, on our own to pick up the pieces.
The advice to the newly bereaved is to keep busy, good advice, but I would add that you should always include time for yourself and for reflection, to enable you to process, as best you can, the awfulness that is being widowed.
Check out support groups in your area. Talking to and exchanging experiences with other widows can be really helpful.
This thread really sums up what it is like to lose a soul mate who you have cared for - lovely words from all that sum up how I am also.
My darling sweetest Sharon was very healthy, never saw a doctor, then out of the blue she felt slightly “off”, went to doctor then hospital but was then immediately diagnosed the same day in July 2019 with incurable inoperable stage 4 pancreatic cancer which had spread to her liver with multiple tumours there. She was given a prognosis of between 6 weeks and 3 months There are no words to describe that, none.
People say she fought it - but she didnt; she point blank refused to accept it and carried on. I took her to Venice on the Orient Express and stayed in her favorite hotel on the Grand Canal, Australia as Covid shutdown started, visiting Sydney for our Ruby, with The blue moutains, Melbourne, Ayers Rock before the World shut down and we just made it back to the UK as the door shut. We then went to our house in Crete on the breaks in between. Sharon did 40 chemos (unheard of), 13 emergency hospital admissions, then had kidney failure and was transferred from hospital to hospice with 3-4 days to live on Christmas Day last year. Still she defied the medics, and lasted until May. I cared for her in every way for the 3 years: learned to cook to fatten her up (she’s the only person Ever to put weight on during these chemos, which only 38% of people can handle more than one cycle), cleaned her, held her while she was sick, massaged her daily, stretched her limbs, spoonfed her, comforted her, did all the admin with my boot firmly up all the doctors arses every time they backed off, never left her side for 5 months in the hospice slept on a camp bed. Three nights in a row at the end I held her all night in my arms when the consultants, sisters and nurses all KNEW without doubt she had a very few hours to go and wouldn’t see the morning - but she lay cuddled in my arms every night refusing to leave. Then she went on the following evening in a way to protect me (I can’t talk about that here - just too terrible).
People say how great I was - but THEY DON’T UNDERSTAND. I never wanted to be anywhere else (I stopped work the day my girl was diagnosed),nor do anything else - she was my girl, my soul mate, my reason for living, everything, so of course I cared for her in every way, and her every need.
We were devoted before Sharon was ill, totally inseparable - but we became closer and both found some kind of deeper love, of joining of souls, only a carer and cared for can understand…
And now she’s gone. There is nothing but pain, pointlessness, and at the moment I simply can’t consider this to be real: it’s a nightmare and one day soon she’ll be back in my life, but she won’t.
Sorry if this is sad, but having a really really bad day today…
Lots of hugs to you at this awful time.
Oh Dennis don’t be sorry for being sad, we are all incredibly sad and that’s why we are here isn’t it.
Everything you said - I fell 100 percent for the loss of my husband Martin
That last paragraph about how others don’t understand the deepening of love between a couple when one cares for the other. It’s totally true. It adds another deeper level of love to the one that was already there and strong. It’s indescribable almost - unless you have been privileged enough to experience it - yes I did say privileged - because I felt honoured to be able to help him in the way I did - every day. It enabled him and me to be happy together for longer.
But to then lose that person - and to lose that incredible bond from our daily lives - well - that is the saddest thing indeed
Love to all of us in this unique situation
Only the people who have done this will truly understand. Mark always used to say he felt guilty that I had to do everything but I told not to be silly and if it had been me that it was happening to he would have been exactly the same looking after me. It does create a special bond xx
Mt husband died 2 weeks ago, but to.mind a part of him dues in May 2021 qhen he suffered a traumatic c6 complete spinal injury. Which meant that he had no movement from the neck down. He had a tracheostomy tube and a catheter in situ. He had no control over his bowels but he bore it all with dignity. He still had all his faculties. I feel a sense of relief for both him ending his suffering and myself. Is that awful?
No you are not awful. I’m sure your relief is normal and that your husband felt his passing was a great relief to him. Love and hugs to you at this sad time.
@Carol9 thanks for that, and to you and to all of us here who have lost everything…
@Sandra7 Yes, so true… its a different deeper love caring for your partner, something that neither Sharon nor I woukd have known coukd even exist…
@Barbara61It does create a special bond, something deep and primeval, something lovely in its own awful way that is beautiful - but somehow that makes the loss so much worse I think…