I hoped I wouldn’t find myself here

FormerMember
FormerMember
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HiAll

I have just come here from the carers group. If some of you were on there, you may have read my rant at 02.20am from my husbands hospital bedside. Myself and my sons were full time carers for my husband with Macmillan nurse as support and towards the end district nurses, but 24/7 my two sons and myself even when in hospital.

A short outline of my wonderful husband. March 2018 wasn’t feeling right, feeling weak, on our grandsons birthday couldn’t get off the settee, which started alarm bells ringing. Went to GP who arranged an urgent CTScan, the following day Stuart my husband was feeling a lot worse, telephoned the CT dept., only to be told at least 3weeks wait even for urgent ones.

Iput Stuart in the car and went straight to A&E. The doctor saw him and by this time he could barely put one foot in front of the other, sent straight to CT, waiting for the results, doctor said that x-ray had requested an MRIscan. 2 hours later still waiting for the results, asked a nurse what was happening, then doctor came and announced 2masses found in the brain, speaking to neurology and suddenly our world fell apart. Kept in for more scans overnight,no lymphoma, to attend neurology next week.

neurology appointment arrived, stuart, now in a wheelchair as right side very weak, called into the consultants room with the clinical nurse only to be told Glioblastoma stage 4 NO TREATMENT, NO OPERATION, 3-6 months life expectancy....................

Dumbfounded...............referred to oncology, in the meantime had a fit, oncology 6 pallative care radiotherapies, no chemo,nothing.

Radiotherapy over , no more appointments with neurologist or oncologist just dumped on the scrap heap.

We have cared through fits, lasting from 5 minutes to 3 hours, longer ones needing hospitalisation post fit each time 2 weeks lack of speech, struggling with incontinence,then catheter fitted, Stuart’s depression, then the loss of memory, unable to find the words to speak, he fought and fought, defied the odds and got through Christmas and new year, January came and the decline increased dramatically on 25th January syringe driver put in for his keppra, 26th January pain killer syringe driver, which I knew was the dreaded dimorphine. Macmillan nurse and district nurse, back and fore all weekend, Sunday night, I knew something wasn’t right, between 11pm and 2am I layed with him holding his hand, suction machine to clear throat as choking, woke sons at 3am and phoned district nurses, more diamorphine given by injection at 4am, family called to come, he struggled until 07.55 when he took his last breath.

My beloved husband’s fight was over and at last as he had wanted for so long, he was at peace.

It is almost a month now since he has gone, almost 2weeks for the funeral, focused as I was determined to give him the send off he requested, no minister,vicar,humanist no god, in my husbands words ‘if there is a god then why am I like this’. NO GOD, the undertaker was terrified,shocked amazed and said these th8ngs can go wrong if you don’t know what your doing!!!! Tough!!

my way on the way in, pendyrus choir sang during the commital,his cousin read funny stories of times during his life,life of Brian on the way out, that will put a smile on their faces he said, and it did.......

Week 3 since his death,feeling really weird, keep having this funny feeling, like a pressure cooker is building up in me and totally consuming me, to the point of frightening me. Week 4 very tearful, unable to control my emotions, always kept things under control whilst my sons and Stuart were around, but now, unable to keep myself in check, I don’t know what is happening to me. I sleep but when I wake it feels like I have had 10 minutes, just exhausted, don’t want to do anything in the house and certainly do not want to move any of Stuart’s things. I found myself asking my son and my brother in law, should I be sorting out his things, when is the right time, I cry myself to sleep each night but It doesn’t help, I have to make a decision on returning to work but when?

I don’t know who I am or what is happening to me

any I site would be much appreciated

Buddylyn

  • FormerMember
    FormerMember

    This is horrible for you.

    So many traumatic things happening in such a short space of time. My heart goes out to you. This is all understandable bearing in mind all you've  been through.

    You will be completely exhausted and emotions upside down. Doctors will sign you off concentrate on you and your family. 

    Leave what is not essential rest and take your time xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you wifeof26years, it is nice to know I am not going mad

    buddylyn

  • FormerMember
    FormerMember in reply to FormerMember

    It's a horrible time but like many here it helps to know others understand and are here to say whatever and however we feel. He's  at peace and the pain is over but there's  empty huge holes and emotions to ride. We're  here for you xxx

  • FormerMember
    FormerMember in reply to FormerMember

    This is just so unbearably awful. My husband died 9 weeks ago tomorrow so I am a few weeks further on than you. I still feel some of the things you are describing but not so intensely all the time. You’re not going mad. I read a description of bereavement as like a sinkhole suddenly opens in your life. That idea felt very real to me. The thing that shocked me was that, like you, my husband’s death was expected and I thought I was ready. He’s gone downhill sharply and towards the end I wanted him to die so he could stop suffering. Then when it happened it felt like a body blow out of the blue. 

    The thing that has helped me most so far is not fighting against how I feel. If I feel calm and ok I let myself feel that without criticising myself. If I feel devastated and hopeless I let myself feel that. A these feelings come and go and fighting against it just makes things worse I think. 

    Good luck with tomorrow. You’re not treading this path alone. 

  • Buddylyn this is such a very very hard journey and you are definitely not mad. We are all struggling but often differently from each other. We all know there are no words we can use to make it better or take the pain away. Emotions do change as time goes pn

    loomk after yourself 

    luv and virtual hugs

    Jo

    xxxxx

  • FormerMember
    FormerMember in reply to FormerMember

    I understand your words completely you have put it so well thank you. Xxx

    love& hugs 

    jojo xxx

  • Dear Buddylyn, 

    I am so very sorry to hear about the loss of your husband Stuart. To see him suffer so much & it being so out of control is horrific, & I can identify with a lot of it as my husband had secondaries in the brain, so fits, weakness, unable to walk, confusion & speech issues are all too familiar. 

    You are absolutely not going mad. You have been through a traumatic rollercoaster of events with no time to catch your breathe or even examine your own feelings - until now. And now you have grief to deal with too. 

    The sleeping thing is so common, I tried very hard not to dread going to sleep although I was shattered, as I had such vivid dreams & relived all the events of my husband’s illness & death whenever I shut my eyes. Others have said similar, it’s all part of processing what has happened & it will make you feel exhausted, but it’s totally normal. I promise although it does take some time, it will pass. 

    You have been very busy & that is a bit of a distraction but when the funeral is over there’s a sense of now what? You don’t have to sort anything, clothes, gadgets, anything, unless it feels right to you. I ended up just putting my husband’s belongings in one place go a bit, other people leave them as they were for years. 

    I wish things had been different for you. If you can, take a walk today & try to actively notice everyday things, the shapes of the leaves, chimney pots on roofs, again anything that anchors you in the here & now. If you can get out  & give your mind something else to focus on, even if it’s just for 10 minutes it gives your brain a little respite.  It’s worth a try. 

    be kind to yourself, there is no rush to sort anything out right now & you have been the best wife & family to your husband, he would be so very proud of you all. You could do no more, take comfort in that.

    Sarah x. 

  • FormerMember
    FormerMember in reply to Sarah2nd

    Hi folks,

    Anger, sadness, lonliness, these will all surface. I do like the reference to Life of Brian. At my sister-in-laws cremation she organised to go down to the sound of My Boy Lollipop, which has a line, "You set my world on fire", once her children laughed, so did the rest of us.

    You have got to try to look after yourself - I'm not a touchy feely guy, but after my wife passed with glioblastoma, I found it REALLY useful to attend some sessions with a counsellor, and then with a Hospice discussion group - that pointed out to me that i wasn't mad, that the feelings were 'normal'. There's nothing normal seeing your partner disappear mentally, physically, and in pain. You do what you can, it's never enough.

    Hilary passed Oct 2017, and while things have got easier, it's not easy.

    As Sarah said above, try to get out of the house, some walking, etc, if nothing else it's something else to look at.

    Hang in there.

    Ciaran

  • FormerMember
    FormerMember in reply to FormerMember

    You are not going mad it’s a lot to take in such a short space of time focus on yourself and your two wonderful sons

    remember the good times and cherish the time and lots of you you still have to be grateful for with your family! He would want that xx