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I'm really struggling with my husband getting worse each day

Froggybinou
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I have been on anti depressants since the beginning of the year, thank goodness, I am not sure what kind of state I'd be in otherwise!

My husband is getting weaker and weaker by weeks, if not by days. They stopped all treatment in February as the chemo was not working. 

He's now hardly eating (maybe 1/2 tin of soup in the evening, that's it). Sometimes it stays in, sometimes it doesn't... They fitted a syringe driver a couple of weeks ago loaded with anti-sickness drugs and they are still trying to find the right cocktail that will stop the nausea but not cause him to be too drowsy at the same time.

He is not going out any more and struggling so much to go up/down the stairs (our bathroom and bedroom are upstairs but the living area is downstairs and he doesn't want to stay in bed all day). I am so worried he might fall down the stairs one day.

He also finds it exhausting just to hold a conversation and his voice is all muted which makes him sound even weaker. When I ask how he is feeling, he says he isn't too good but can't really explain which bit (he says he isn't in pain). 

I asked the GP last week realistically how long he had left, and she said probably "weeks to short months" - I am so scared... What is going to happen? Will he be getting much worse? The doctor said he will be less and less awake and more sleepy but I feel like I can't deal with the coming weeks at all... We have no family around (he has none and mine is abroad) and we have no children. I can't say I have many friends either as my husband was never a very social person so we never really got to socialise with people. I have a couple of very good work colleagues but that's about it. 

Until now I was pretty good with keeping busy with work and craft activities but just lately with hubby getting worse I can't get it out of my head or concentrate on anything, and the anxiety is eating at me.

I was wondering how you are all coping?

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    Dear Froggybinou, I am sorry to read your posts and the situation that you have now reached. My son was diagnosed end of april last year with stage 4 bowel cancer and full liver mets. If you want to read his story it is in my posts. He had various forms of chemo and trials and eventually we got to the stage where just before Christmas last year his liver went into failure caused by the effects of the chemo. As he was only 34 when I asked his oncologist what would happen (I had scoured internet and had a good idea) she said that he had weeks and not many at that, as he was young he would probably get more and more sleepy and not wake up. He was determined to live every minute of his life as best he could and finally when there was nothing left in his body he went to bed on the Tuesday night, Wednesday still got up to go to the loo but not eating or drinking, Thursday got up at lunch time so his wife could freshen him up and we changed his bed. He was very drowsy and at 3 a change in him happened and he died on the stroke of five that afternoon with his wife, myself, his two sisters and his day with him. He had been so frightened of a horrible painful death and although I am a broken person I think he had a very peaceful and dignified death and I am so pleased that happened for him. Everyone will have a different story but the thing is to have the help from the professionals so that person can die at home if they want. I am sorry that you are facing this on your own and that is a very lonely and frightening place to be. Jonathan died on 19 jan this year 10 days after his 35 birthday. I am lucky to have my family around and friends but it is still a very lonely time. Sending you love at this timexx leslie
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    Hi Foggy. 

    I'm so sorry that you and your husband are in this situation. My husband died at the beginning of April, his wish was to die at home and with the help of our two daughters, family and community nurses I managed to keep him at home but it wasn't easy. I had help from our Macmillan nurse, district nurses, palliative care team and night nurses who came to top his drugs up when he was in pain. We also had funding arranged to put a care package in place for Marie Currie nurses to sit with him at night although we didn't use that and only used the funding for carers to come in and wash him once he was confined to bed but that was only for two days. Our Macmillan nurse was fantastic and was a key point of contact between my husbsnds GP, his oncologist and the hospice that treated his lymphedema and managed his pain control. Do you have a Macmillan nurse? If not please speak to your GP or oncologist and they should refer you. We had a hospital bed downstairs, a rollator to help him move around, a commode and a wheelchair - all of this was arranged by the nurses. Have you and your husband discussed where he wants to be? I know this is a very difficult discussion to have but I found that once I started talking my husband was very clear on what he wanted. Please don't struggle on, speak to your GP and Macmillan, there is funding available to help and put a care package in place - I think it's through continuing healthcare but I could be wrong on that. You need to think about yourself and get the help that you both need. Please contact me if you need to talk or ask questions, I'll help if I can.

    Sue

  • Offline in reply to Barleydog

    Thank you Sadmum and Barleydog for your kind replies. I am very sorry for both your losses, it is just so hard isn't it to see someone you love go this way because of this horrible horrible disease, it is so destructive.

    Since I posted the above, my husband is now "upstairs bound" - basically there is no way he could manage the stairs, and as our bedroom and the bathroom are upstairs this is where he stays. He's lying down most of the day, but he manages to walk to the bathroom once a day. But with great difficulty, and it takes a lot of time, even with the frame. We also have a district nurse who comes everyday to top up the syringe driver, and carers who come twice a day. No MacMillan but we have one of the St Nicholas Hospice nurses available at any time. They also offered for a nurse to come at night but we are not sure this is needed yet as I am here to help if needed (like when he turns over his syringe cable and causes an occlusion - here goes the alarm at 1am!!!). 

    He is getting weaker and weaker... His last "proper meal" (1/2 tin of soup) was last Wednesday. Since then, he only had a very little salad on Monday (he fancied that), and tonight he tried a bit of sardine with salad but as soon as he put a little in his mouth he was sick so no good. Drinking a little, but nowhere near what he should, especially in this heat.

    The Hospice nurse told me today that she thinks he has a few short weeks left, maybe only days (she hadn't seen him in a week and found him changed a lot since). 

    In 2 weeks' time it's my 40th birthday... I am already dreading it, knowing it won't be a happy one, just hoping it won't be as bad as it could be......

    Thank you for your support, I hope you too get the support you need. 

  • Offline in reply to Froggybinou

    Hi Froggybinou

    I'm so sorry to hear that your husband is getting weaker. Its such a difficult time and my thoughts are with you both. Be kind to yourself and accept the help that is offered. You're right, this is a horrible destructive disease which makes you feel so helpless. I have found comfort in this site, I feel less alone and hope that you find the same.

    Sue x

  • Offline in reply to Barleydog

    Thank you Sue :) I must say the district nurses and the carers who come everyday are absolutely brilliant, they are a great help to both my husband and I as they always take the time to have a quick chat with me to, asking how we both are and if there's anything else they could do etc. 

    Tomorrow we are having new carers in though because so far we had the early intervention team and we have now got approved funding and so a new team will take over. I hope they will be as good as the others, they were wonderful with Andy.

    I read you story from another thread, I hope you are doing ok xx

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