[pammieParticipant]

I lost my partner of 41 years, just over 6 weeks ago. I have a physical disability and am mostly confined to a wheelchair. My beautiful husband, Keith was also my main carer and I am finding life very difficult. The pain is raw and physical at the moment and I can’t seem to focus on anything. Keith’s passing was very unexpected. He had a fall at the beginning of March and fractured his femur. He was in hospital for a couple of weeks and got a blood clot a week after coming out of hospital. He was taken back into hospital as an emergency on 10 April and diagnosed with severe pneumonia. By 13 April he was worse and the doctors sedated him and put him on a ventilator while they treated the infection with antibiotics. After 6 days sedated and on the ventilator, he was no better so they did a CT scan as they said something was interfering with the treatment and they thought that because he had a blood clot in his leg, he may have one in his lung. We weren’t prepared for what they eventually told us. They had found the underlying cause of the pneumonia - he had a tumour in his left lung. The following day the oncology team confirmed that the tumour had spread to his bones and was inoperable - they couldn’t even treat it with radio or chemotherapy as he was too weak because of the infection. The advised us that if we left Keith on the ventilator the cancer would spread untreated and he would likely suffer - they said it could be weeks or months before nature took its’ course and that the kindest thing to do would be to remove the breathing tube and allow him to pass peacefully. On 22 April he passed away peacefully with all his family around him. In twelve days the love of my life and my rock had gone and I don’t know how to cope with the emptiness left behind. The shock hasn’t worn off yet, and I think it’s blocking the grieving process as I’m swinging from enormous pain, to feelings of disbelief and unreality. We couldn’t talk properly at the end, although the ITU staff were wonderful and reduced his sedation so we could communicate through me talking to him, and he giving hand signals and squeezing my fingers. We managed to say the important things, for which I am very grateful, but it’s difficult to find comfort anywhere at the moment. Has anyone experienced anything similar, and has anyone had a situation where they cannot talk properly at the end. I never envisaged anything like this and always thought we could say our goodbyes properly, but I’ll never really know what I should or could have said, or whether Keith was scared at the end.

[PollyParticipant]

Dear Pammie,

First, let me say I am so, so sorrowful for the situation you are in. I cannot even begin to imagine it.

The pain IS raw and physical and I imagine in your case even more so. I hurt very deeply (physically) after Tony died and it was a surprise how much it hurt. I thought my pain would be internal and mental.

Be grateful Keith communicated to you. My Tony only wanted to die, and his last wishes were whisky and a cigarette before indicating ‘more medicine’ to the NHS District Nurses and then dying with his eyes open. No hand squeeze, no “I love you” in fact, he could not even remember how long he’d been married to me (a question posed by the nurses before they pumped the drugs in.)

Polly

[EmmaParticipant]

Hi Pammie,

The trauma you have experienced will have to work itself through. The first few months you are going over and over the end of life. How did this happen, what if etc….my husband also died of cancer, he couldn’t speak and I torture myself about what I should have done. we never ever spoke of death, it wasn’t on the cards, he was going to beat the disease I convinced myself even to the day of death. Don’t think about him being scared, he was too ill to be scared I believe. When my husband felt so ill through the treatment he could only focus on that. we are told the dying process is meant to be pain free and peaceful so hold on to that thought otherwise it’s another thing to worry about.

I hope you have some physical support as he was your carer? Have you people around you to support you?

Emma

[AngieParticipant]

Hi Pammie,

I am so sorry to hear of your very sad loss and will keep you in my prayers. It is very testing times ahead, but try and think of your wonderful life together. This helps me daily and although I can’t say I am coping any better than I did at 2 months, in fact it feels worse, as the first 6 weeks, I was on autopilot, trying to organise everything and in denial. I lost my husband of 27 years and best friend on 20th December last year. He contracted a deadly infection 13 months after heart surgery. He spent the last 6 months in hospital, trying a very new drug treatment, he had a fall in hospital too and banged his head which caused a bleed in his brain, which didn’t help, and then a cough which in 24hrs turned to pneumonia. He was rushed to ICU and it was difficult for him to speak as he had a powerful breathing mask on his face. He tried to speak to me and we were able to take his mask off for a few seconds and he asked me to take him home. It broke my heart when he said those words as it was the one thing I couldn’t do. He never got to speak to me again, although I sat with him all night holding his hand. I wished I knew we didn’t have too much longer, as there was so much I wanted to tell him, but we’d had so many blips, that I truly thought this was another one and we would come through it. His kidneys were failing and they had to put him on a dialysis machine at 4am. I spoke to him to say that I just needed to step outside whilst this was done. He was dosing in and out of sleep and I asked him to squeeze my hand so I knew he could hear me. I’ve been told that the hearing is one of the last things to go, but I think he was too weak to do this. When I returned 2hrs later they told me that he needed to go on a ventilator machine to allow his body to rest and he never spoke again. His breathing was calmer than earlier and he looked comfortable. My children and family came up to be with us and spoke to him. I have to believe that he could hear us and wasn’t in pain or discomfort. Like you I wished we’d been able to talk, about this outcome, but I think he fought to the end to stay. I wish now that I’d climbed onto his bed to hold him, but I was too scared to interfere with all the tubes and wires. I hope when the time comes they are at peace with it all and no longer suffering.

I too hope you have friends or family to support you and are getting some help. Think of the happy times you shared, 41 years is an amazing time together! these are precious and special memories you can recall and treasure and they will see you through these coming weeks and months. Talk about him as often as you can. I love talking about my hubby to anyone that will allow me to. 🙂

Be kind to yourself and take care of yourself. We’re all at different stages of loss and the grieving process but are all here with you and so understand how you are feeling.

Angie xxx

[LottieParticipant]

Hi Pammie, I too only had a brief window when the hospital gave him steroids were he was lucid for a few days, he couldn’t really speak but managed I love you. I too didn’t know what to say, when first told he had cancer , I told him to be positive,so when I few days later they told me it’s terminal I did nt tell him. I hope it was best it didn’t seem kind.
I spent the next 10 days sleeping at the side of his bed, and on 2 occasions sneaked in to be nearer, though I too was scared of catching the canula in his arm and then later the morphine pump. So they were just brief time, how I wished I’d done it every night.
I really empathise with your situation, I too feel the shock is stopping my grieving, people ask how I am and my reply is I don’t know, it still feels like I’m living inside a nightmare, and I’ll wake up back to my normal life.
I hope I conveyed my love for him and that he didn’t suffer too much, it took them so long to give him pain relief, it really was awful.
I hope you are coping a bit better now as you posted 6 weeks ago, and that you feel able to grieve, I have started to cry more, but taking 1 day at a time, wishing you love and a sending a hug, (it’s hard without those isn’t it).lottie x

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