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 Gentlewaves,

    hope you’re managing to cope with all that is happening to you. 
    I think you’re doing all you can in a bad, sad situation. 
    It must be very difficult for men when they’ve always been in control of everything around them.

    My husband is in similar situation but probably got a year or two (whilst treatment continues to stabilise situation)but we’re both realistic that this won’t be very long.

    It’s like living one day at a time - saddest thing is that there’s no real future anymore… together. Sometimes it almost feels like you’ve got it yourself!

    keep strong, you’re doing your best! X

  • FormerMember
    FormerMember in reply to Roberta8

    Hi Roberta8,

    yes we have had a terrible day today. My husband has had terrible symptoms of mucus build up in throat can hear it gurgling he is trying to cough but very difficult has to go on all fours and bend head forward. He is on medication to thin mucus and saline nebulisers to help open airways but exhausted by it all . He is not sleeping because of it I contacted palliative team who said to carry on with nebulisers and cut down on milky drinks but he is only having drinks since will affect his nutrition. Also, we had a bad morning because he was trying to show me his laptop with financial information etc but ended up locking himself out of on line banking then too exhausted to phone and has no voice anyway. He is really down saying wouldn’t treat a dog like this. Palliative team only 9-5 so I will phone again in morning. He is supposed that be having a operation on Wednesday to his vocal cords so he can speak , it went wrong the first time. He was desperate to still have operation as been horrible not speaking. I’m not sure if anaesthetist will be happy to do as deteriorating so much, if they don’t he will definitely go ve up. I felt like my head was going to explode today I didn’t know what to do I felt very angry I banged doors and threw the dogs metal dish around garden. It is just terrible he is such a lovely lovely man never hurt a fly so kind, never smoked drank worked all his life helps anyone , just why is he suffering so much. He is only 55 had so so much to live for so much to give very interesting and intelligent,

    gentlewaves CryCryCryCryCryCryCry

  • Hi Roberta8

    So sorry you have had a really tough day. Its just so difficult to deal with everything else as well as the illness itself. It just becomes one day after another of exhaustion and trauma, for the sufferer as well as the carers (I don't really like to call myself a carer, I'm a wife).

    My husband says he just cannot go on like this. His communication skills are also slowly decreasing; he was on the phone to a friend today and he couldn't think of words to say and it just wiped him out afterwards. He has mentioned going into a home for respite at least. Part of me agrees, the other part of me is devastated and sad at the thought of it. He is 69, but in no way an 'old' 69. 

    Throwing the dogs dish round the garden and banging doors is a good way to let off steam! Hope all goes well on Wednesday and the operation gives your husband a bit more positivity and comfort.

    Try to be strong for him and yourself. 

    Love

    Llamalover xx

  • Hi Gentlewaves, sorry to hear you’ve had such a bad day. Your husband must be feeling at the end of his tether.Thank goodness he’s got you otherwise everything would be even worse. My husband said today that he didn’t know what he’d do without me and although it’s good to hear it’s also hard to deal with sometimes.. keeping strong, upbeat etc. Sometimes I go in the shower at night and have a dam good cry! such a release without him seeing me upset.

    I hope the throat op works ok and you get some decent help with palliative care

    your husband sounds a lovely man (and you)

    take care, thinking of you x

  • Hi Llamalover

       Your husband is same age as mine and is having exactly same problems with getting his brain to function properly, we both think it’s the big combination of drugs he’s taking.. what misery!

     I don’t know what your hospital care is like but ours is non- existent, he hasn’t seen anyone since November, it’s almost like they’ve give up on him

    keep strong, we are the only ones that can really support them x

  • Hi Roberta8,

    Yes its become noticeable in the last few days that he can't remember words or hold a conversation for more than a few minutes with anyone. In my husband's case we assume its the brain tumour affecting him as well as possibly the medication. He has mood swings too, which is all part of it. Hard to deal with at times, but I try to understand without getting too upset in front of him.

    No we haven't heard from the hospital since February, think the oncologist passed us over to palliative care once my husband decided not to have anymore chemotherapy (due to side effects). The Community nursing care team have been very good, and we are able to phone 24 hours if we need any help or advice.

    You are right, we are the only ones to fight in their corner, as it were, but I hate having to speak for him because makes me feel as if he's a young child, when he's a grown adult. That must be so demoralising for anyone.

    Take care 

    Llamalover x 

  • Hi, many thanks for your last message, had to look up the empty jug philosophy! Never heard that before!

    fairly reasonable day for me, how was your day
    Think you’re dealing with much worse than me at present, but you seem so strong!

    husband pretty depressed but I’m doing my best to make everything as good as possible 

    had a bad moment this morning when someone (who’s husband has newly probably curable cancer) contacted me via site and suggested that I need to not feel angry at husband neglecting his health over last few years.. it’s apparently the cancer I should be angry about!!!(he’d ignored symptoms for 2-3 yrs - wouldn’t have check up -even after me suggesting it) 

    I hadn’t actually expressed anger at him, I’m not stupid! Just feeing sad that it couldn’t be diagnosed sooner…

    I’m probably just feeling very down tonight…. She probably just has no idea how bad you feel when there’s no light at the end of tunnel!

    x

  • Hi,

    No I hadn't heard that before about the empty jug either, but it was the emotional support volunteer who said it to me last week. I thought it was a good analogy to use.

    It is difficult to explain to other people, not in our position, just how difficult life is, without someone, maybe unwittingly saying something hurtful. I too have felt angry and resentful, not at my husband, but at the illness! Who doesn't.

    My husband is a bit fed up with the number of times visitors (and professionals) tell him how well he looks. Yes he does have a good colour and hasn't lost that much weight, but he feels absolutely shattered and generally unwell most of the time. He puts a brave face on to other people!

    Think we all try to be positive, but its such hard work isn't it? It literally hits me, almost physically sometimes, when I think of what is to come. I have had moments when I just want to run away from it all, which I won't do obviously, but  just grit my teeth and get on with it!! Not sure if that's being strong or not, I definitely don't feel very strong at times.

    Take care, 

    Llamalover xx

  • Hi again,

      you are so right about how difficult it is when people think husband looks fine!!!

    my husband is very similar, has even gained weight and has good skin colour etc.

    but he always makes a good effort when anyone arrives at house… they don’t see him struggling to get up in night or first thing in morning when he’s in so much pain he can barely move…

    he’s got couple of old pals coming over next week to take him to local village pub and I’m sure they’ll think he is 100% ….

    yes, plenty of times I run away in my mind…. But like you I’m here forever for as long as it takes, we have to do this, and we can X

  • Morning Roberta8,

    Yes, its difficult to tell people that no, actually he isn't well and cant go out, not even into the garden , in my husband's case because of his mobility issues and also the need to now use a commode at a moment's notice.

    I expect that at one time, I would have been the same, not really understanding how ill a person is until you have to live with this dreadful disease.

    Well, onward and upward, with another day. At least we have another day at the moment! I never thought we would actually look forward to carer's and the Macmillan nurse visiting, but at least they understand how difficult it is!

    Take care,

    Llamalover xx