Do you ever feel better? A long story.

My wife has been seriously ill almost all of her life but more so in the last year more so.

Started off she went off her food and could not get out of bed too weak. Last food or water she really drank was on a wednesday. By Sunday I had had enough. Its her body but I was really concerned. Tried the NHS help line and that was a nightmare. Finally at 6.30pm on Sunday I got through. Lots of faffing about later the Doctor arrived at 9am on the Monday. She did not want to go into hospital but eventually persuaded her. Within 2 days she was on a non invasive ventilatior. Full oxygen. In intensive care. This was in March. Because of CV19 I was not allowed to visit her. By May still on the ventilator. Called in to say my goodbyes as they thought she was dying. As I was allowed in I could feed her and look after her. She rallied round. Much better. Three more times I was called in to say goodbye. Three times I looked after her how she should have been looked after. The final time was in May. Even her consultant in London rang and told me “this was it”. Again I went in. Again I pulled her back from the brink. Got her breathing right and conscious. Took me three days constantly at her side but I did it. She was actually sitting up and talking. I promised her during one of the long night sessions that if she breathed better I would buy her the biggest cappuccino I could buy. She would see her horse and dog again. I kept my promise. I disrobed from all the PPE and went and got her that drink. When I left she was happily sipping on the coffee. Next morning freshly gowned up a new sister on the ward asked who I was. Told her. Asked how my wife was. Great. She has been sitting up having a nice cup of coffee. This cheered me up no end. I went in expecting great things. She was in floods of tears. No one had been near all night. She wanted a bedpan but her presses on the buzzer had gone unheeded. She takes great pride in her appearance and cleanliness but she had made a real mess in the bed and had been sitting in it for hours. Of course the &^% sister did choose that very time to waltz in. “Morning, how are things”. Must admit I was very restrained. Did call her a liar though. At change of shift the new sister called me over. Sorry but as your wife is not dying you cannot come in any longer. Thought this might happen. My wife and I had had a long chat. We both decided that hospital is no place for sick people. She wanted to come home and I wanted her to come home. Thats what we told them. Got the chat about not surviving long. May not even make it home on the ambulance. If she did she would last no longer than 2 days.
She made it home. As promised I got her in her wheelchair and up to see her horse. We had dinner with friends. She was in a bed in our living room where she could look through the patio doors to the garden I had planted out for her. The dog was given its own bed at the foot of hers. I was never more than a few seconds away if she needed anything. Carers came in twice a day morning and night to help. Had a couple of close shaves and again the wrote her off but she bounce back. Then at the end of October she was off her food again and her oxygen levels were low. She refused to go into hospital. We compromised. The district nurse got her a place in a local hospice so she could have her oxygen and a saline drip. I could visit too. A real bonus. Went with her to settle her in, was not supposed to but went anyway. Got myself home and was awoke next morning early. Her breathing is bad can you come in quick. In I went. Got her conscious and breathing right. By lunchtime she was sitting up and eating. Come 6pm end of visiting. She held my hand and asked that I did not go. She was cold and afraid. I asked, half heartedly, if I could but to be honest I was knackered. It would have been so easy to sleep in the chair by her bed. They said no but promised they would keep an eye on her. I drove home slowly. Very tired.
I fed the poor dog, has people coming in to her, fumbled about the place not really knowing what I was doing. Climbed into bed. My hand switched the light off. The phone rang as soon as it got dark.
Can I come in? She is not breathing right again. I drove slowly to the hospice. Could have driven faster but to be honest I was tired and did not want to have an accident. Even tried drinking a can of coke on the way there hoping the caffeine would wake me a little.
I drove into the car park. Two nurses were waiting for me. Sorry she died 10 mins ago.
Ohhh god I will never forgive myself. I should have stayed with her. I feel so so guilty. So selfish for wanting to sleep at home when I should have insisted on sleep in the chair by her bed.
I say sorry to her every day. I cry all the time and am wracked with guilt.
Now my days are long and empty. No family. Friends dont come near because of covid. Do not see the point in doing anything anymore. On January 18th would have been married 46 years and the longest we have been apart is 3 days when she went into hospital for her treatment.
Do not feel like I will ever feel better. What do I do now? Basically I dont feel like going on anymore. Even if I did die tonight who would ever find my body?

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@Frank2 I’m so so sorry that you as carrying this x How awful for you x Ive read others posts, talking about professional support you can get through the site
I hope someone.can point you in the right direction x x
I’m wishing you strength and thinking of you x

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Frank this is heartbreaking. All the times you were there though… you couldn’t be there every single one and your body was forcing you yo do things out of exhaustion.

I’m so sorry. Sorry you feel like you let her down when time and time and time again you pulled out all the stops. Sorry that you are now without her. Sorry that you were both let down by the system too.

I wouldn’t say I feel better but I have become more accustomed to the daily shitness of my life without my husband (he died in October suddenly). In the first 2 months I was shaking all the time and only wanted to kill myself so yes I feel better than that but I still think of him every moment. I don’t think we’ll get over this but maybe we’ll learn ways to live with it and enjoy our memories one day.

Try to rest/sleep, keep eating, try to keep going. i cant offer a good reason why because to me things feel pointless often too.

Do you have any family or friends. Is the dog still with you? Feeding and looking after my cats keeps me getting up. Where I’m going to end up I don’t know but I hope you keep writing to us. Take care.

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Hi Frank,

I’m so sorry to hear about your wife. It sounds as though things are very tough and you are feeling really overwhelmed.

I think you could really do with some support and I’m glad that you’ve been able to talk about how you’re feeling here. There is lots of other support out there, and I would really encourage you to reach out and speak to someone about how you are feeling.

The Samaritans are always there 24/7 if you need to talk about anything that’s bothering you (116 123, or jo@samaritans.org).

Sue Ryder offers an online bereavement counselling service. This is a free service and sessions are held via video chat so you can attend from home. There’s more information about this service here: www.sueryder.org/counselling

You can also make an appointment with your GP and ask to be referred to counselling or other support services in your area. Please be aware that GPs and support services are not currently offering face-to-face appointments, but will usually be offering telephone or online alternatives.

You deserve care and support so please, Frank, get in touch with one of these services.

If you are at risk of harming yourself, please call 999 or contact your GP for an emergency appointment immediately.

Take care,

Mick
Online Community team

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Thank you all for your messages.

Support? The hospice says it will do telephone support but I have never been happy on the phone and its just not the same. If I am talking to someone I like to do it face to face. Just me but thats the way I am.

The hospice did send me a survey form. In which they say “tell us like it its” so I did. No I was not rude or blamed anyone but told them how hard it hit me, and still does because I was not allowed to stay. A very nice doctor also visited and said you need help etc She would contact my GP and get some answers to questions I brought up. Get me some bereavement counselling etc Nothing has happening yet. That was a month ago.

Will just have to get on with it myself. Like I have done all my life.

As I said before its gone from 3 visitors three times a day. Nursing, wrong word. Looking after her 24/7. Dare not even go into garden for long. If I went shopping etc someone had to come in and keep an eye on her. She was allocated a night sitter twice a week, they gave it a fancy word but that is what she was, to stay with my wife whilst I slept next door. We live in a bungalow. Must admit I needed that break even if it was only for an hour or so. Gone from that intense involvement to zero. Nothing. No visitors. No help. 24/7 all on my own.

In the first week or so went mad filling and plastering, painting the walls where my wife damaged the walls and doors with her electric wheelchair. Had to replace kitchen doors from where she scraped the paint etc off. Eventually I realized I was erasing her physical presence from the house. Stopped doing that.

Now I have gone from one extreme to another. So what if I look a mess? So what if I dont wipe the counter tops down? So what if I go to bed at 2am. Who knows and who cares?

I suppose I am depressed. I phoned the doctors to see if I could talk to someone. Had to go through reception to be triaged. Not put through to a doctor just told… well that does not matter. As I said before just have to get on with it myself, or not perhaps.

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Please don’t feel guilty about not being there.

Years ago we weren’t there when my grandma, died even though we’d visited everyday and asked the Dr’s, to call day or night we were too late.

I took comfort in these words

God took you when I wasn’t there I know the reason why, He knew I thought the world of you and would never have let you die.

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Paula,

Thanks for the reply. Its the first thing I have read since this awful mess that I can relate to and has helped, no offence intended to other messages.

“God took you when I wasn’t there I know the reason why, He knew I thought the world of you and would never have let you die.”

That is so so true. Looking back your right I would never let her die. I truly have kept her going so often over the years, all 45 of them.

I should really have taken the hint from God. She lived with being badly disabled since 3. Did not stop her getting a full time job etc Always been in a wheelchair from polio. Since then she has coped with post polio syndrome. Myasthenia Gravis. Osteoporosis, bad arthritis, five lots of cancer. She right up till the last few weeks did her own pills. 75 a day. And she did mine too. Been on a ventilator for weeks and sometimes months. Lost track of how many times the doctors have written her off.

The way I should be looking at it is that she should have died back in May. But she got home. Said her goodbyes to her friends, her dog, and her horse.

One thing does keep springing up in to my mind though. When a friend did not have her old dog put to sleep Jackie said " you have to think of the dog, not yourself. Do what is best for the dog. Do not be selfish do not let it suffer" Sounds awful equating it to a dog but the same principle applies.

It is just my selfish thoughts at the time I find hard to live with.

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With love to you @Frank, it sounds to me like you moved mountains to get it right. I can relate because I have taken myself through every living and dying moment, trying to get it right for his son, brother, dad and even his ex wife… I was so hyper trying to cover every avenue x I was lucky however and I was there, I take great comfort in that and that I made decisions at the time that were right at the time x We are human, death is so harsh and so difficult to contemplate x Your wife knew she was loved and I guess, so so proud of you x Take each day as it comes and I hope you find away x A good heart is why she chose you and you’re still here loving and wanting… that alone is testimony of your love and commitment your beautiful wife x you were there every step of the journey x for some reason … who knows… you tried but couldn’t be there at the end. Sounds like you had no control over that x But every day you cared for her x considered her needs beyond your own x be proud. I hope you feel better soon x I am now 14 weeks on from losing my gorgeous man x I feel different to initially, the shock overtook me and him at the time x I am now starting to reflect on memories rather than his departure and my love and craving for him is profound and damning but, I feel blessed f9r every living moment x Please take each step at a time x All the love and strength wished to you x x Cinders x

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Thank you Cinders. You were lucky. Made the right decision at the time. Unfortunately I didn’t. Something I have to live with.

When I reflect on memories it only makes me sadder. I take the greatest of pride in doing what I promise to do. Always keep my promises. When I left to reassure her I promised she would be ok and she would be home by the weekend. Promised to take her down to her favourite holiday spot St Ives in Cornwall. I know she reluctantly agreed as she knows I never say something I do not mean. Those last promises never kept but I did keep the promise she would get back home. Never thought it would be in a small box in the bottom of the wardrobe. When we are allowed to move I shall scatter her ashes in the harbour in St Ives. That too though, I know its stupid, feels like I am loosing her again but this time more permanently. Do I scatter and keep my promise? Do I keep her with me? I know its daft but I find knowing she is in the house reassuring. Weird but true.

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Hi @Frank2

Like i said ‘I made.the right decisions at the time’ what I mean is I did what I felt was right in that moment. I tore myself apart after… I even believed, had i not.called a.nurse.on the Sunday that he would have not died on the Wednesday! But… Like I said I do feel different now. I’m still terribly traumatised but progressing steadily x

I’m.thinking of you x x

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Thanks Cinders, Your thoughts mean a lot to me.

Of course your right. Common sense tells me there is nothing I could probably have done. Even if I had brought her back that night how many nights would she have left anyway.
What made it worse was the nurses attempts to help me. They said I was better off not being with her when she died at it is not a pleasant experience. Made me wonder if they waited till I left to give her the morphine to ‘speed it up a little’ so I would not be put through the trauma.
Guess I will never truly know.

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Dear @Frank2,
I will apologise in advance because I can’t always find the best words to express myself, but after reading your posts a few days ago and again today, I felt I had to add my own comments.

Your pain and suffering are expressed so well in your own words. Your comment about being absent when your wife passed and how that made you feel really touched a nerve with me. I don’t know if it might help but I would like to tell you about when my wife passed as it was similar to your own experience.

On my fateful day in July 2020, I had gone through my normal routine of rising about 07:30, had breakfast, sat in the living room watching TV then after a couple of hours I felt incredibly tired and fell asleep in my armchair in our living room. I awoke about 2pm and realised my wife hadn’t come downstairs and I imediately knew something was wrong - she never stayed in bed that long. I raced upstairs to our bedroom and I spoke to her to try to wake her, but no response. I watched her for a moment to make sure she was still breathing, shoulders moving up and down, but there was no movement. I ran around to her side of the bed, she was lying face down, her normal sleeping position, and as I moved her shoulder slightly I was shocked to find her eyes open and staring. She had passed away whilst I was asleep, and she was still warm to the touch. That was the start of my nightmare.

Over the last months I have replayed that day often in my head, over and over. My wife was disabled too and was always in pain, and in her last 6 months her pain levels had increased dramatically as the medical profession had seen fit to reduce and limit her levels of morphine and other pain-killing drugs. Like you, I will never forgive myself for not being at my wife’s side at the moment she passed. I had often fallen asleep in my armchair in a morning, maybe for an hour or so, but never, ever for as long as did on that morning. I talk to my wife in bed every night before trying to get to sleep, and I always apologise to her for not being at her side the day she needed me most. If only I had found her an hour earlier, had woken sooner, perhaps she might still be with me today. I have never been a particularly religious person, but find I am becoming more so over the last few months. I have now reached the belief that I wasn’t meant to find my wife that day until it was too late. I think she had suffered so much pain in her last few months that God called her to be by his side, to stop her pain. Had I found my wife sooner I might selfishly have beeen able to keep her with me - she might still be here and suffering her pain. I still feel guilt at not being there when she needed me most - that will never leave me - but it eases the pain I feel very slightly by choosing to believe what I do. I believe that things happened that day beyond my understanding, things that didn’t normally happen in one of our typical days.

Like you too I try to honour my wife each day as much as I can, but I have no intention of staying on this earth any longer than I need to, because my wife and I were a team, stronger together than individually, and we always will be a team. My place is by her side, and since she can’t come to me, I will have to go to her. I used to fear death, but not now. I will be glad when my time comes to join her.

I’m sorry I don’t have answers my friend, but I wanted you to know that you are not alone in your feelings.

Take care.

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@Frank2 However we look at it, its mighty painful and such great loss- I ve tortured my self this morning remembering his subtle distress at leaving his 17 year old son and missing out, not being there for him, ripping my mind apart thinking about his distress, his shock, how he felt, his sadness. We knew on the 22nd October, we had a journey, it was not until the 29th October that our idea of a dire situation was realised - we found out he had months - by the Sunday on the 1st November at 1pm we were told this was weeks only and by 10pm of that evening ( A crazy crazy, chaotic and mind blowing day - nurses dr, drips drugs…) - a phone call from doctor and nurse confirmed it was days, he died on the 4th - however calm and pragmatic, however brave we wanted to be and accepting, we had no time, we were both reeling in shock.

The next day, he walked out of this house and into an ambulance to be taken to the hospice which was his wish but even there, because he was so physically able and agitated - it still felt chaotic

Im not going to say anymore but it was distressful and heartbreaking ---- I just keep saying to myself - what ever was good what ever was bad - whatever wasnt quite right, its the last thing hes worrying about now, hes not in pain, hes not scared, hes not sad …

I hope that helps a little. I work very hard to change my mindset as I’m sure we all do, maybe its easier and according to our genetic make up, what we have been through, our personality…I dont know. I do know that all of us are trying to keep moving and that is all we can do x And, that we have all had a terrible physical and mental time - the damage and loss are profound, we have to look after ourselves x

All my love … youre doing it …

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@Alston56 Im so very sorry for your loss and the way you feel x Thinking of you

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What messages and courage I have read in these last two posts on here.

The theme seems to be the same. Regretting not being there at the end and blaming ourselves for it.

But one thing does stand out above all is the care and the sacrifices that have been freely given to our loved ones.

I remember telling a young lad years ago who had a real argument with his mother and said some nasty things. I told him to go back home and apologise straight away. The longer he leaves it the harder it will be to do it. I also said that when someone dies a lot of ‘ifs’ follow. If only I had not said that. If only I had apologized. If only I had treated my mum better etc. He did apologize straight away.

Here are we all these years later with our own ifs.

But having said that despite her illness, despite her disability’s we did get out and see the world. Had one hectic social life. Going through her things I found a diary I had no idea she had kept. It was for the year 1989 when she was 42. Every and I mean every day we had done something. So no ifs regarding socializing. Told her I loved her every day when we were together. No if regrets there.

So thank you for putting up those most heartbreaking stories. Have to confess it brought a tear to my eyes. I can never feel the way your hurting now inside but I can more than empathise having a similar experience.

Got to realize we are human and some things are way beyond our control. I am hoping that there is a higher purpose. We were not there because the guy, or lady, upstairs said you have had enough suffering. Time to come up here with me and enjoy a bit of pain free paradise. One can only hope and pray. As my wife Jackie once said to a owner of an old dog. The dog was in pain. She said your keeping the dog going not to extend his life but for you to have him around you. Do not be selfish and have him put to sleep. Perhaps she was telling me something in advance.

Still hurts though.

Thanks again for the postings.

Frank

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@Frank2. So sorry to read how you are feeling, and the experiences you and your wife went through.
You are worried about whether to scatter your wife at St Ives or keep her with you. There are lots of places now that make jewellery and ornaments where they put some ashes in. Have a think about it. That way you could still keep part of your wife with you, and also keep your promise to take your wife to St Ives. Take care mate, I know it is hard.

Wong thank you for your reply. I had considered all you suggest. Even having a diamond made. The thing is what happens to the Jewelry when I die? Donated to a charity shop?

When Jackie was cremated I was asked if I wanted her wedding rings. I let them be cremated with her. They were very valuable and personal but I let them go with her. I am sure you understand.

I fell yesterday, badly. Managed to get myself up. This morning my hip and legs hurt like hell but who cares? I literally cried with the pain. I am by myself and my wife would be nagging me to take pain killers etc. I haven’t . At least something is telling me I am alive.

About to take the dog for a walk. Thought the fresh air may clear my mind. Just started chucking it down. Someone up there is dropping hints.

Why I am saying this? If I ever do make it through the next few months and if I ever get something like normal I can read this again to show how low I have gotten. If I were not such a coward I would find a way to end it now.

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Frank2, I feel your pain. I too wish I was dead but haven’t the guts to end my life.
The pain we feel, the guilt, it goes on all day every day and it’s exhausting.
Love to all who are suffering on here xxx

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Frank2
I identify with you . I looked after my husband for 3 years and last year we felt so let down by medical professionals before and afterlockdown and in trying to shield David my health broke down. I struggled to work and care for him with a broken care system. It was a continual battle and exhausting.
He had to go to a home , which he hated and he had his 70th Birthday in there and I was not allowed to see him.
I had him home again but with my support system gone I caved in. This time he went to a home he liked and was happy in . Again I couldn’t visit not even ar the window.
I managed to get stronger and had him home
We were delighted but sadly David passed away 3 weeks later.
I suffered so much guilt as we didn’t spend our last anniversary together either.
I rang for help from the Hospice to help him with his suffering on the last evening. No one turned up and after repeated Phone calls he died 3 or 4 hours later.
I felt so very let down.
Over the last 3 months I have realised a lot was beyond my control and I know he would not want me to feel guilt or blame myself. I tried my best. Caring is exhausting.
Bereavement counselling has helped a lot.
Cruse have a waiting list but they are a huge help.
I hope you can find hope and peace, knowing your wife would want that more than anything.
Take care Ann

Dear @frank2, I’m so sorry for your loss, please don’t blame yourself, you did everything you could, you couldn’t have done any more. Unfortunately we who lose our loved ones are just not powerful enough to be able to cure or keep them with us. Maybe she wanted to pass away when you weren’t there. Please try not to feel guilty as you have enough on your plate with the awful grief. Try not to be so hard on yourself. Take it hour by hour and give in to the grief, shout, cry do what ever feels right for you. Please do speak to your Doc if you feel you can’t go on, seek help. I lost my wonderful husband in June last year. Take care, hugs Margarita