Husband has changed -difficult to cope with

FormerMember
FormerMember
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My husband who is only 55 has terminal cancer, lung metasteses from head and neck cancer . He says he has always excepted his fate and even before they sad it had spread he said he accepted/expected it would become terminal so was prepared when we were told. He managed to continue with normal activities until a couple of weeks ago then things changed. He has more symptoms fatigued and short of breath on climbing stairs etc. He has also taken to his bed and I feel is pushing me away, he doesn’t really like me close to him   He tells me to go upstairs to bed despite me having a z bed set up next to his downstairs, we need to sort his affairs eg bank, I need passwords etc but he is reluctant he gets irritated and says he is too tired and to do another day. He lies on the bed 24 hours doesn’t want to sit in the garden, go out in the car. It all seems to have escalated since the palliative consultant called him unfortunately it was the only time I had popped out, he told me she said he had days to weeks to live, I questioned him as thought strange to say. He then said she said he had a shorter rather than linger time to live and he interpreted it as days to weeks. I am getting very isolated, tearful and lonely not feeling like a wife anymore, has anyone experienced there loved one change drastically and become distant Thanks 

  • Hi good evening!

    been fairly reasonable day- husband out driving himself into the the ground as per usual.. doing major works in garden/building projects and exhausting himself as there is so much he planned to do…. But now there is no time

    maybe this is what you do when you realise your number will soon be up 

    I will be there for him as long as it takes.. he’s such a good person and dealing with it pretty amazingly- not sure I would be so brave!

    perhaps I will be similar? don’t think so to be honest. I have nothing to prove to myself or otherwise- I am what I am - hopefully fairly strong person - still running a small business from home.. was going to give up last year but to be honest it’s giving me strength to go on.

    On a different mode… are you really interested in llamas? Have any? I’ve always loved them too!

    keep strong.. you’re helping me get through this

    and big thanks, hope your day wasn’t too bad x

  • Hi Roberta8,

    Yes, our day hasn't been too bad, although my husband has had two small seizures in his right arm, which isn't so good. He has to have a sleep after they happen as they really take it out of him.

    I did a bit of gardening and then went with our eldest daughter and her baby to a local garden centre, to buy myself some more work! As you say, just have to keep busy. 

    No, unfortunately I don't have llamas or alpacas, the nearest I've got is leading an alpaca on a walk. They are just such sweet and funny animals. When I joined the online community, I tried a few names, and they seemed to be all taken, so I settled on this one. It was fairly late at night and I'd had a stressful day, is all I can say in my defence!

    That's very kind of you, it does help being able to chat to someone in a similar situation doesn't it?

    I hope your husband hasn't overdone it today, its easily done, when they are so ill.

    Llamalover xx

  • Hi Gentlewaves,

    I hope things have improved for your husband and that your are getting some help from the palliative care team.

    None of us can understand why this is happening to us can we? I know it has to happen to someone, but have to say why us....like your husband mine has always been hardworking, honest and decent. Then again, I wouldn't wish this on anyone who isn't any of those things. Its just a horrible, evil illness!

    Keep strong and take care of yourself too.

    Llamalover xx

  • FormerMember
    FormerMember in reply to Llamalover

    Hi Llamalover

    My husband had an operation yesterday under local anaesthetic on the end as they felt he was too unwell for a general. Hopefully, it has gone well as he is not allowed the speak for 48 hours but the couple of words he has accidentally said his voice is stronger and louder. Difficult to say about his swallowing sometimes it is okay other times he has a build up of secretions in his throat. and has been having im drugs by the district nurse. 
    Today he is very tired and has spent most of the time in bed .

    it is horrible seeing him deteriorate so quickly. I don’t really feel very  supported by the palliative team and my husband has  had no support from the hospice. The gp and district nurse are visiting tomorrow so will see. 
    it is a matter of taking things hourly by hourly now . I still feel I can’t really believe it which is frightening as I am scared it will be a massive shock. On one hand I do realise that he is so so poorly especially seeing him sleeping and hearing a horrible rattle but then when he is awake things seem more normal when we chat( on paper) about things. 
    I am very lonely despite my children coming and going and my friends sending messages because although I have these lovely people in my life, the person I was so looking forward to spending so many years with is disappearing. If only I could open my eyes and it be a terrible nightmare.

    gentlewaves 

  • Hello Gentlewaves,

    I'm pleased that your husband has come through his operation fairly well. It might make him feel a bit more positive for the time being.

    Hopefully the district nurse and the doctor will be able to help you to get better support from other agencies, such as the Palliative care team. If you don't have a Macmillan nurse, you can ask for one. Ours has been a tower of strength and support to us. 

    I know exactly how you feel, this dreadful illness makes you feel lonely and as if you are the only one going through it, no matter what other family and friends' support you have. We have had a couple of friends just been to visit, and they were obviously shocked to see my husband in a hospital bed in the living room. We had a good chat but it has worn him out completely and also makes us think of times gone by when we used to live in a 'normal' world.

    I felt exactly like that, hoping someone would tell me its been a nightmare and that I could now wake up, but I have a feeling the nightmare will be worse when my husband isn't here anymore. I hate to see him suffering, although he isn't in any pain at the moment and never has been, its more emotionally and mentally, which can be worse.

    Although my husband is 69 and I'm 67, we still feel that we could have had some more years together. Life is so cruel sometimes.

    Thinking of you - make the most of the time you have - its all we can do.

    LLamalover xx

  • Hi llama lover, just read gentle waves last text and need to contact her to give support- think she is pretty amazing but felt so sad/upset for her that I couldn’t  respond…. But will when I get my emotions together…

    hope your day has gone reasonably well? Considering….all that is happening.

    today wasn’t great for us -husbands old friends, who insisted on coming over to take him out to local pub .. turned up had quick look at his latest expensive car… well , much better than a bucket list in his case..

    went off to pub.. brought him back an hour later???! Even he was bemused

    I guess most guys really can’t take dealing with their contemporaries dying….. though to be honest he looks much better than both of them!

    Poor husband.. just stuck with mad ironic me!

    he came into kitchen whilst I was cooking up hopefully lovely meal , hugged me and said “what would I do without you?!

    golden moments! X 

    He’s watching cricket on telly tonight at least I can do that for him !

  • Ps I also said “ no problem you will never be without me! “

  • FormerMember
    FormerMember in reply to Llamalover

    Hello Llamalover

    Thank you for your reply and support. Sadly we have been told Macmillan and Mariecurie nurses do not work in our area it is a town in the cotswolds Gloucestershire. Our local hospice is a min to frid 9-5 so provide day services although haven’t been doing much recently with Covid. So it is the district nurses and Gp for support. The palliative team are based in a hospital which is quite far away and again work Mon-Frid 9-5. 
    My husband has no pain but having problems with secretions and swallowing. He is allowed to try his voice tomorrow so is looking forward to speaking to family and friends as he had not been able to join in conversation for a long time. 
    my husband is 55 and I am 57, so many plans dreams. As you say I don’t know how I will ever cope after he has gone. I worked full time all my life and although my town is beautiful I don’t know many people, my friends family live a good few miles away. 
    Once again thanks for your support. Wishing you and your husband all the best .

    gentlewaves

  • Dear Gentlewaves,

    have been following your sadness and how brave you are dealing with much loved husband.

    I am in similar position but probably a year or so away from final crunch time.

    thinkyou are pretty amazing person dealing with this, children etc can help by being around and there for you .. but I totally understand when you say how you’d hoped to retire with the person who mattered most to you !

    when we got husbands diagnosis last year I remember saying- hey! I thought we were going to get old together!..well  it’s just going to be me and the cat!

    hope husband is feeling better after recent op? Well as good as you can after an op like that!

    much love and thinking of you - you are such a brave, good person X