Heartbroken

So sorry to hear about your experience. Don't blame yourself, though: I gather it's quite common for people to die when their family members have left the room, for whatever reason. You were with him and he know you were there which is what matters.

So sorry for your loss. My husband passed away 5 weeks ago after being ill with stage 4 lung cancer for 2 years. His initial diagnosis was a few weeks so I am very grateful for the extra time we had with him. It was a rollercoaster of two years with not great care.  In the past year he kept losing his voice and the past few months it was down to whisper so he found it very difficult to communicate which washeartbreaking. He had a fear of choking to death and wished that he could pass in an instant.  He got his wish. He was admitted to the hospice for management of his symptoms and we hoped to have him back at home for a little while but that was not to be. He had a pulmonary embolism and died in the hospice I am told in I. An instant . Although we knew he had a little time left, I did didn’t expect him to die so suddenly. I left him the night before and didn’t say goodbye properly as he was falling asleep so I just said see you tomorrow and we can have a coffee in the café he didn’t respond . I did not get the chance to have a coffee and to say goodbye properly and to say other things I wanted him to know and it keeps going round and round in my head, so I understand how you are feeling right now and I wish I could help you take comfort in the fact that he could hear you and he knew you were around. 

This grief. I am feeling is so painful. after 40 years of being with someone it’s understandable!  I aM having better days but  still finding it very, very hard.  I’m trying to keep busy but also need to rest as exhausted.  As best as you can take care of yourself x

Thank you so much for your kind words and I am so sorry for your loss and know exactly how you are feeling.  I feel so guilty about going to the bathroom and worrying about if  could have done more for him. It is our anniversary on Monday which will be very hard.  I cannot bear staying in the house and wish I could be somewhere else.  Some people can take great comfort in their memories and love having things around them that remind them of their loved one.  I am not one of them I cannot bear it I look around and all I can see is the last 7 weeks of the most horrific circumstances I have experienced in my life.  Going to bed is painful, watching something on TV that we watched together is so hard to bear.  I cannot even get in the car because I remember how excited he was when we bought it from new and now it means nothing without him.  I just hope for both you and I to eventually get to grips with our loss and we can emerge stronger which is what both our husbands would have wanted. Many blessings. 

It takes time to cope with the traumas.  I say traumas because it is multiple. I kept thinking about the final week my husband was in hospital, the final month from finding out there was more tumor growth and the best they could offer us was another medication, the final year of my husband's life, the hope, and the realization that we were actually at the end of the road. Each of the different traumas and went over and over in my mind - and still do - but less than before. 

I prefer to believe that your husband did not die alone.  You were still there.  You were there with him the entire journey and cared for him in the best possible way.  You may not have been physically at his side in the precise moment of his final breath, but in your mind and heart, you were absolutely at his side one hundred percent.

I'm so sorry to hear about the delay collecting the hospital bed.  To me 3 weeks seems totally unacceptable.  I wonder if the District Nurse could get a collection escalated on your behalf?

Thank you for your kind words and I am sorry for the loss of your husband.  I think it is the worst single event that you can ever go through. To be honest both the district nurses and the GP were pretty useless, almost like they weren't there. My husband was fast tracked from hospital with a care package which sounded great because we were going to have a lot of medical people involved in his car at home.  That did not happen. Apart from the carers who were brilliant we had one single visit from the district nurse in the 7 weeks he was home.  They phoned me once a fortnight to see how he was doing and that was it.  On the final day I called the district nurse out because my husband could not stop vomiting and she gave him some injections.  As far as support from the GP goes there was nothing there either. They never once phoned or visited him.  Two hours before he died I called them because my husbands breathing was terrible and I thought he was in pain.  The receptionist spoke to a GP who said they would not come out because this was what happened at end of life care.  I put the phone down and one hour later he died.  In the morning the GP receptionist phoned to ask how he was and did I still need him to come.  I told her he was dead.  So in answer to your question about the District, no I wouldn't think so.  

Wow that is just an awful experience.  My heart goes out to you.  In my view, you should have been supported much better during that time.  I really hope that end of life care can be improved for everyone because it just isn't fair.

I feel fortunate when I read what you've been through but I'm still annoyed about our own experience too.  When my husband was dying, we had moved just outside the catchment area for our GP maybe only about a mile away.  The palliative nurse got on our case to change to the nearest surgery.  At the time, late 2023 to Jan 2024 I believe that GPs needed to have appointments at least every 28 days so that an inquest wouldn't be needed after the death.  (Unsure if video or telephone appointments counted).  We were given conflicting information from our own GP - one of the doctors said he could stay with the practice.  Then the palliative nurse visited again, annoyed and asked us why he hadn't changed yet.  I explained what the Dr said that he could stay.  Then the palliative nurse arranged a meeting with the Drs where they discussed whether my husband should move surgeries and they sent a Dr and the palliative nurse out (while I was at work my daughter was there) and they more or less forced him to change surgeries then and there because most of the doctors were unwilling to do a house visit.  He died 2 weeks later.  2 weeks (one of which he was in hospital for)!  What was the point in hassling a dying man over that!  I never saw the palliative nurse again but if I do, she will get a piece of my mind.

My beautiful Valen was told he would get an extra 3 to 6 months if he had palliative chemo straight away. 
We decided to go through his private health insurance as he would get experimental drugs unavailable on NHS.

My love spent 3 of his final 4 weeks on the phone up to 4 times a day going between the private hospital and insurance trying to get a start date. 
The insurers kept saying paperwork was missing. 
Hospital kept saying they had done it.

it shouldn’t have been down to him to do all the chasing and calling. 
He shouldn’t have had all that stress, distress and anxiety at a time when we should have been spending our time revelling in our love for each other.

The worst time was when he said to insurance lady “ Your delays are literally killing me. Every hour you delay literally shortens my life”. 
His neck swelling so large he could only talk in breathless whispers, but that he said clear and loud. 
And then he cried as never before. 
Each day the hope diminished in his eyes.

Then, the morning we left to travel to the hotel we were staying in before the chemo next day, the private consultant called. 
The consultant we would be seeing the next day face to face. 
He called to say the last scan showed the cancer was also in his brain stem and he was arranging another scan.

My poor poor darling sat and cried and asked if anything good would come his way soon. 
His shoulders slumped and his twinkle left his eyes.

I am totally and utterly convinced that all this avoidable and unnecessary stress caused the sudden almighty heart attack or embolism that he had in front of my disbelieving eyes just hours later.

Down the line I will be taking this further.

Just wanted to reach out to you with great sympathy. That is harrowing to hear what happened to your beloved husband. I am so sorry. Yes you must pursue that further when you can.

My thoughts are with you.

Hugs to you today. X

Oh my goodness, what a horrible experience and I am so sorry for the loss of your wonderful man and the circumstances surrounding his sad death.  I hope eventually we will both get over our crippling grief and sadness and I wish you well.

Hello

So sorry for your loss. I lost my husband just over 18months ago. He fought bowel cancer for 2 years at one point going into remission after they cut out his tumour but it returned 5 months later. At the end it was sepsis along with his advancing cancer that took him. He got sepsis 4 times and it was on the 3rd that they thought that that was going to take him but he miraculously pulled through. He like your partner, became bedbound at the end unable to more or less do anything for himself. Watching him reduce to what he became from what he was was heart breaking. He was such a happy go lucky person and all that just went. We had been together for 40 years. I wish you well moving forward. Take Care of yourself. 

Vicky c