My husband died on 31/8 aged 51.
He was diagnosed with pulmonary fibrosis in Dec 2019 for which there is no cure. Life expectancy 3-5 years. He was on oxygen 4m later. He had a double lung transplant in Oct 2021 which should have extended his life 5 years with a better quality of life. He came home in Dec last year but was pretty much in hospital most of this year until he died following complications. I have been grieving for him since he was diagnosed . I can’t tell you what a rollercoaster it’s been. I actually felt relief when he went. Relief I wasn’t scared anymore. Sorry if that’s sounds heartless. I am broken.
I can pretty much forget that he’s gone as he hadn’t been home since May. Back to work yesterday. I can’t comprehend he’s gone. I cannot believe he’s gone. I cannot allow myself to think he’s gone. Anyone been through anything similar and can help me? I haven’t cried everyday. Not today at all. I cried plenty when he was sick.
I can understand what you have been through. My dad died from pulmonary fibrosis. It is very scary. I would visit every day and wonder if this was the day and then it was. I found him in the bathroom. I felt so guilty for a long time that he had died alone. My husband died last year He had a cardiac arrest in front of me. I did CPR but a month later he passed away. Grief isn’t linear and we get through day by day. I am not the person I use to be. The fun loving girl I used to be has gone and I don’t know that she will ever come back. Life changes when we are touched by death. Sending hugs x
I’m so sorry to hear about your dad & your husband. I often wonder if it’s not as bad as I knew he was going to die. My dad died of a heart attack 20yrs ago.
I am thankful he didn’t suffer at the end and I got to say everything I wanted to him but I am so so lost. Sending hugs to you too xx
Hi tiaposy I so understand that feeling of no longer being fearful my husband was also diagnosed with idiopathic pulmonary fibrosis but sadly died within two weeks I lived in the most awful fear for those two weeks dreading the phone ringing and not wanting to believe the doctors that he was dying I didn’t sleep but finally after he died I just couldn’t stop sleeping I have cried very little I’m now 10 months down the road and get so upset as to what he is missing and get pulled up short selfishly missing my constant companion what ever I wanted to do go away for the weekend go to the pictures he was always there I could always make plans and have someone to do them with I miss that terribly my home is lonely now even though I have good friends I always feel something is missing and not right thinking of you
I am so sorry to hear this - 2 weeks - wow that was so quick. I know there is no wrong/right way to grieve. I am also so sad he isn’t here - little things like TV series we were waiting to watch the end of & he will never see it now, places he will never go. I force myself to go out - to restaurants etc even though it feels wrong. We were shielding for nearly 3 years. The pub where we had his wake was his local - that was hard going in there.
It is the 1st anniversary of his transplant on Sunday and it is bringing up all sorts of memories - I am so angry he isn’t here to celebrate this after fighting so so hard. He never once complained
Hello Tiaposy,
I am so sorry for your loss and everything you have been through. My words will not make it better, but hopefully you will realise through this forum you are not alone. It is very very early days for you.
My husband died in Nov 2021…I still can’t believe I say those words and find it hard to accept that he is no longer here. He was diagnosed with Myeloma (blood cancer, treatable but no cure) in June 2020, he was 56… much the same as you my world fell apart. I won’t go into everything that happened over that time, but it was truly horrendous. He had other co-morbidities which did not help. He died in the end as a result of Covid.
I can relate to your relief at no longer having to feel scared and worried…I think that must be entirely natural after such an awful prolonged period…I used to try and comfort myself by saying I would never have to go through that again (sorry if that sounds strange).
My emotions are still all over the place, I cry every day…I’m sorry to say the roller coaster continues in it’s own way, perhaps a different roller coaster…some days are more bearable than others. As you go forward, remember to be kind & gentle with yourself and do everything at your own pace. You are not alone. I wish I could say it gets better…it just gets different, take care & big hug x
P.s. ‘It’s OK, to be Not OK’ by Megan Devine…is a good book. x
Thank you for your kind words. Ironic thing is I would go through it all again in a heartbeat as it would mean he was still here
We have a friend who is still in the hospital following a heart transplant but I can’t go back there. It isn’t a happy place. I speak to him on video but that triggers all sorts as he’s in the room next door to where my husband died. I am so thankful this guy got his chance though. They were such good friends. Nobody can know what it’s like in there unless you’ve been through it & they supported each other x
You are very welcome Tiaposy…it’s all rubbish, but you are not alone. I know we would do anything to have our loved ones back.
I completely understand your difficulty with potentially visiting or even just seeing the hospital on screen… I’m sure your friend understands too. Perhaps try an old fashioned phone call if possible so you don’t visually have to see the environment. I expect your friend is just really pleased that you are keeping in touch bearing in mind everything. I hope he continues to improve. You look after yourself. x
Be brave be hopeful life must get less painful
Tiaposy I understand what you’ve been through as I went through anticipatory grief with my Mum. She discovered her heart failure was terminal on 31st July this year and for the next four weeks I was a complete mess, crying, unable to sleep, barely eating. During that horrific time I was practically begging her to die as I couldn’t take the anxiety anymore. She finally passed on the 3rd September, I was with her along with my Dad and her two sisters. I too felt relief when she died which I felt guilty about.
I’ve cried a bit since every couple of days or so but am for the most part ok now a month after her funeral. I definitely feel better than I did when she was dying - anticipatory grief is real and very frightening. I had to go on beta blockers and sleeping tablets which I’m off now.
Perhaps it hasn’t fully hit me yet? I hope it has because I don’t want to feel like that again. It’s strange though, I LOVED my Mum and lived with her all my life so I think I’m taking her death far too well. I worry the awful feelings might come back and grief will hit me properly a month or two down the line. Sending hugs
I also know how you feel. My husband died in July. We had been married for 54 years and life now seems so dreadful even though I have a loving family only 10 miles away. The void is dreadful and I too had 2 years of anticipatory grief as he had dementia and I was so scared and worried and mixed up and I prayed that he would die without getting to the very terrible last ravages of dementia. He died after getting Covid and delirium and his last few months were a living nightmare for me and heartbreaking as he had to go into full time nursing care which is something I never thought would happen. I prayed for his release for his sake but now feel no relief because of the memories of our life together right from the early days of meeting him .People say it will get easier but ii don’t see how if you have loved someone so much and been with them for many years. I wish you comfort from wherever you can get it. I cry every day and I cried for two years prior to his death so anticipatory grief is a double blow.
I feel exactly the same as my husband died in July after 63 years of marriage. He was in hospital for a month and then moved to a nursing home where he died a month later. He had prostate cancer which had spread and he was totally confused for the whole time after he went into hospital. I visited him every day, but it was terrible as we couldn’t have a proper conversation as he seemed to be in another world talking rubbish. He was always such a bright intelligent man and I am starting to cry now as I write this. How can I live without him ?
My heart goes out to you. I’m finding it all unbearable and the memories of all our life together cause me so much pain. Everywhere I go even to see my two sons and their families I see and miss my husband and just feel (as you do too) totally lost and just desolate. My sister was widowed when she was 50 and although I speak to her on the phone frequently her attitude is that a younger widow will never sympathise with an old widow as they have had their husbands for a long time but her attitude hurts me as the longer you are with them the loss is harder to bear. There is no answer except to try and get through each day.
Its all so desperately sad isn’t it? However we lost our loved ones - searching for answers to our grief - is it normal? So many questions. Tomorrow, a year ago, at 7.30am I got a call from the hospital saying they had a set of lungs for Ian. Now he’s gone - how can that be right? Where was his 2nd chance at life? He fought so so hard, never complaining and now there is nothing but an empty space.
My husband never complained he was such a brave man,
Likewise mine was the same. Just accepting of his dementia. Unfortunately it was me who didn’t come to terms with it and just grieved for two years before he was diagnosed and then for the two years afterwards before he died. I couldn’t seem to handle the situation emotionally and it made me very snappy at times. I was just so heartbroken and depressed at witnessing the condition and the decline in him as he was such a lovely man. How I wish I could have him back in spite of the dementia. He was a Trojan to the end.
My husband died two weeks ago but had been in and out of the hospital and hospice every month or so for the past 18 months so I too feel “detached” or distant sometimes and can “forget” momentarily almost by busying myself…
I have spent the past 7 years “grieving” from when he was told his cancer was incurable. Grieving for the holidays you’ll never have, the retirement you won’t live, etc etc… I think I am also really good at self preservation and switching my brain off to protect myself… he has left an enormous hole in my heart and I am utterly devastated but can also bring myself round to thinking maybe it’s better this way than suddenly losing him… we had time to adjust and say everything we needed to say over and over and seeing him in SO much pain for SO long does mean you feel that relief… though people telling me “thank goodness he’s not suffering anymore” or “at least he’s not in pain now” makes me want to run them through with a sharp stick…. Don’t feel bad for feeling whatever you feel: you’re not alone. X
Thank you Paula. I wish that you could find some comfort in these terrible days. Some people are tactful and some people are not. Even my own sister keeps saying to me " you’re not alone… there are thousands like you" This doesn’t help at all. I know there are thousands suffering as I am and you are too but I am me… and it is my intense sorrow. When we are hit by the enormity of losing our husbands after a long and happy marriage we can’t think straight. Like you I am so devastated that life is hard to get through. My thoughts are with you.
7 weeks today Ian took his final breath. 49 days without him. It is getting harder to fool my brain that everything is normal (He hasn’t been home for nearly 6 months). All the medical things, hospital etc, I don’t want to think about any of it - it hurts. I have friends who are still there too. Ian’s good friend who was with us when he died had a heart transplant a week after Ian died & went home yesterday. While I am so happy for him I am still so jealous. Is that normal?? I just want him back x
I know just how you feel, so sorry we are both in this predicament. My husband died last July and I cry every day . I just cannot adjust to living without him although he was in hospital for a month and then another month in a care home, I always expected him to come home xx