Troubled by his final days.

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My lovely husband died very peacefully in a wonderful hospice last week. He had a remarkable 15 months after a devastating initial diagnosis of an inoperable primary tumour and multiple mets in every section of his Liver. He was calm and stoic and disciplined throughout chemotherapy ,had infections and DVT and rashes and neuropathy and far to much stomach pain in the weeks leading up to his death.Our daughter and a lovely nurse were, with him when he finally slipped away in his sleep. The nurse afterwards described him as remarkable at the end. I had popped home to swap cars and get changed but l know that sometimes happens.We were together for 35 years and were fine with eachother throughout. But l am troubled. A few days before he died a Dr told him that he had weeks rather than months or years to live. It did not surprise me as he was very bloated around the abdomen and had swollen feet and legs, his lymphatic system wasnt working. The scans he had in A and E as an emergency clearly showed progression ,we both knew this. Yet in the hospice he was accusatory, shocked by what the Dr had said he said to me 'You knew didnt you? You have been looking up signs online, that's why you have been talking about me seeing the baby( first grandchild due in two weeks). I told him lwas less surprised at the prognosis than he was because of the scans but l had no special knowledge. In his final hours he pulled his hand away from mine as though irritated ,he did not do the same with our daughter. He had been so loving and devoted all these years, l was very much cherished,my heart is aching because he died annoyed with me and seemed to think l had kept something from him.l was more aware of end of life signs it's true, but l had no idea the end was so near. 35 years of best friends trust ,gone in the last few days. He thought l was deceiving him, it's not true. So sad.

  • Dear Trentlady,

    I am so sorry to hear about your loss.

    My husband died over a year ago. It is very early days for you;  however, I do recall trying analyse every detail of the last few days before his death. 

    There were many times, my husband would say things and at times, flinch when people came near him. That was not the true person that reflected him. I have personally learnt to accept that it was the cancer; I did not know what he really meant and at times he was in pain or it was the drugs. What I am trying to say is that do not be so hard on yourself. What defines your relationship is the 35 years which you describes as loving and devotion - not the last few days when in all probability he was not his normal self.

    It is important that you are kind to yourself.  Do what need to do and stop when it gets too much.

    Take care of yourself,

    With lots of love,

    Dutsie x

  • Dear Trentlady,

    I am so very sorry for your loss. This is a heart-breaking time right now.

    What I would like to say to you is that I don't think the final hours and the way your husband behaved towards you in the final hours meant that he was annoyed with you. I know this is so very hard, but try not to take it personally. The behaviour of a person close to death often changes and can seem irrational to us at times. The person may be afraid of what is coming. Perhaps the person is in a lot of discomfort,. Medication and the inability of the body to deal with all the medication and break it down makes them confused or disoriented. Perhaps the person is in emotional pain at the prospect of having to let go of life which also means letting go of everyone they love.

    You describe your relationship as a lovely one with a lot of trust and understanding. It was the cancer that came between you in the final hours and everything that came with it (medication, discomfort, fear of dying, etc.).

    Those are my thoughts after having read your post and I hope they will help you in some way.

    Hopefully you and your daughter are a good support for each other in this very difficult time. It is very early days for you on this journey and I am glad you have joined this group because we all are here for one another to share and talk about our experiences which, in all cases, have been traumatic because losing the one person you love the most is traumatic.

    Love, Mel.

    I don't like the term "moving on" because it sounds to me like we are leaving our loved ones and the life we had with them behind. I like the term "moving forward" as it implies that, while life goes on, our loved ones are still with us in our hearts and minds. 

  • Dear Trentlady

    I am so very sorry for your loss, it’s devastating. And I am glad you are reaching out to us here. Although we have different experiences we face the same fears & it helps hugely to be able to discuss freely the dark thoughts that occupy our minds. 
    I am further down the road than you, about 20 months since I lost my husband but I still have flashbacks to those last days & I can relate to what you say, we too had a good loving marriage but hours before he lost consciousness he seemed to be finding fault with me alone, it had never happened before & he had previously said how glad he was that I was looking after him.
    my hubby had brain mets, was on antiseizure meds as well as pain relief & was finding it increasingly hard to swallow. When I went to give him his meds he gave me a look I’ve never seen before of complete distrust & was hugely suspicious of me giving them to him.. he looked liked he didn’t recognise me at all.He refused to take them- cue panic from me.I knew he had to have these meds ASAP & got on the phone asking the hospice team for help, they tracked down a nurse who came out but it was another hour before she could get to us. They told me he had to have those pills. He asked me why he had to have them & I said “to stop it hurting” but I had to involve my son in some deception to get him to take them- I told my son to go into our kitchen where we had a notice board& say the nurse had written on there he needed to have the tablets right now- I felt really bad implicating my son in this (he was 16) but the hospice team were adamant he needed the pills immediately & id already spent an hour coaxing him to take them unsuccessfully. So I got my son to lie about the notice board but my husband did then take them, just not on my word.  he never was able to swallow tablets again, by the morning the syringe driver had been set up.  
    it has played on my mind at times, the look my husband gave me, so unlike him & having to involve my son in getting him to take the pills, but I know that it wasn’t me he was suspicious of, the effect of the cancer was messing with his reasoning & the meds would have been adding to it. 

    I know in my heart & head we did all we could for him, in sound mind he would’ve known that too. Take comfort that you also did all you could. He wasn’t really cross with you I’m sure, it’s just part of this awful disease. Don’t let it take away happy memories too, you have suffered enough already 

    much love 

    Sarah xx

  • FormerMember
    FormerMember

    Hi Trentlady

    Sorry for your loss its early days.

    My hubby has been gone 3 months now, and 53 years we had together.

    He was in a Hospice for five days.

    What hurt the most was when i went to kiss him or hold his hand he pulled away from me, this really upset me.

    I asked the sister why did he did this and her reply helped me a lot.

    They know they are going and have to leave you, so they start to withdraw from the one they love the most, his was not like this with his children or gran-kids only me.

    Take Care Ellie xx

    "You Never Walk A Lone"

  • When my husband was agitated about not having his full handwritten meds ticklist, l told him ,because his medication was changing so often , the hospice would print out a drug sheet with tick boxes for him as soon as they had finally decided on the correct combination, that settled him. I cannot describe the comfort tour reply gave me. There was an incident where he told the nurses my daughter and  l were not competent enough to adjust his pillows,that was true.  He did not withdraw from our daughter , that would have been too much for her and he knew that but he was annoyed with me and pulled his hand away. He waited till l went home to change the car and died with our daughter and a lovely nurse in the room, very peacefully. So that's a blessing