Since my last message in December, so much has happened and I have not actually had time to sit and digest it all. So sorry for the long post. Firstly, a huge big thank you to eekk who suggested I contact our local hospice at the time to step in and help, as I was having absolutely no joy whatsoever with our local GP (who, I may add, have still not been much help!).
The list of things that have gone wrong no longer outweigh the list of things that have gone right which, in my book, is a massive plus. Yes, I am still struggling with finding my feet in a new area and jumping through hoops to get stuff done and admin sorted, but knowing my husband is being cared for makes all the jumping worth it.
My husband has been in hospice since just before Christmas, and they are brilliant. He did come home for Christmas for two days but he was so unwell that my heart was breaking and Christmas, for me, was incredibly bittersweet. I know it was our last together which made it all the more poignant. I really struggled to get the Christmas decorations up as my heart was simply not in it, and only did them for him. On his return home he simply had no energy and did not even see them, instead he went to bed. He also suffered a terrible fall on the second night and hit his head on the floor, resulting in a trip to A&E to be restitched, and back to the hospice. I don't think I will be celebrating Christmas for a while.
Since he has been in hospice I have noticed a weekly deterioration in him, almost as if he is slowly fading away. He is no longer able to walk unaided, and even with a walking aid he struggles. He has had three falls in the hospice when he decided to go to the bathroom unaided (through no fault of the wonderful nurses, who found him and promptly told him off as did I!) , and he is now completely bedridden. He has had a permanent drain fitted for his ascites, which keeps coming back at an alarming rate.
Coming home is something my husband dearly wants, as he wants to be in familiar surroundings which the hospice team have been wonderful in arranging. The reality of turning the bedroom into a hospital room, especially the sight of the hospital bed, seemed to hit me the hardest. It all feels too real. And my biggest fear is that he dies at home, stupid I know, but I don't know how on earth I will cope with that. This is his wish, but I am extremely worried about this as it will forever change how I feel at home knowing he died here. I have only moved into the house 7 weeks ago, and already I am considering selling it and moving on as the memories and association the house holds for me is too much.
His rapid decline, muscle wasting, incontinence and now suffering with Hyponatremia (they have had to reduce his duiretic to counteract this) is awful to watch. The doctor's have told us both that he has a limited time left with us, something he acknowledges but keeps saying he will get better. He keeps telling me to start planning holidays in the summer for us both, I never correct him, rather I plan with him and go to my car after and cry, both from frustration and sadness. He barely eats, and only takes one protein shake a day as he refuses any more. He is also struggling to eat and swallow, so only likes mashed up food.
I have no idea what time we have left together, but then again does anyone? I go from coping one minute to crying my eyes out the next, I feel constantly anxious about the future and being on my own at 53, the thought makes me petrified. I am also angry, both at him for doing this to himself, and for all the difficulties it has created for us both. We have only been married for 9 years in August, an anniversary I know I shall be acknowledging on my own this year. His illness has made me look at life through a totally different lens, everything looks and tastes different now I know his time is limited.
The hardest thing for me is the response of people (and organisations) when you tell them what your loved one is dying from. Trying to get his PIP upgraded from mobility to Special Rules has been the worst. The DWP would not accept the DS1500 and rejected it on the grounds "it was not cancer". No reasons, and trying to speak to someone on the phone has been a nightmare. If they ask me one more time if he can plan a journey, walk unaided long distance or tie his shoelaces I think I may scream. It is almost as if his illness is viewed as unimportant. I have taken this up with them and sent a letter, together with another doctor's report, so am waiting to hear the outcome. As for friends, well some of them are best left in the "non-friends" category. I will always remember my husband for how he lived, rather than for how he died. And he lived incredibly well, generous to a fault, kindhearted and caring. And I will love him always.
To anyone struggling down the same road with alcohol, please, please try and beat this illness, for yourself as well as for your loved ones. I will always live with the fact that he could have beaten this illness in the early stages, but there was always an excuse to do it later. And now it is too late.
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This is all so very sad. A very moving post. I have tears in my eyes for you. I can only wish you all the strength and love in the world to see you through this emotional journey x
Thank you Aztec632, it is a horrible time right now, and having this site to go back to when I am feeling lower than usual is a great help. It helps a great deal to know I am not alone (and to stop myself falling into a pity pit which is easy to do when you are on your own). x
Hello love.You have my empathy.....it is crazy what we can inflict on ourselves. Fortunately I stopped drinking 4 years ago,there was no choice, simple as.
I fully understand him wanting to be at home,in familiar surroundings, and yourself there with him....although of course that also puts more pressure on yourself.
I wish you all the strength you can summon to stay as strong as you can for him. I would be just the same as you and go along with it all,then sobb out of sight .
Terribly sad in so many different ways. I was on my own so no one close could see how bad I felt, the shame ,guilt etc that I felt and your husband may well feel the same. .
I can see the position from both sides.
My thoughts are with you and your husband at this difficult time.
Hi, I’m so sorry to read what you’re going through. End stage liver disease is not pretty is it. Having nurses both parents in their final days, Dad in the hospice and Mum at home, I can reassure you not to be scared of having your husband die at home but do make sure you’ve got the support in place.
As you’re already tapped in to the hospice they will make sure you have everything you need. We had carers coming in 4 times a day at the end and either Marie Curie or hospital nurses most nights. The nights I didn’t have anyone, my brother stayed too. I was hardly ever on my own.
With my Dad it was cancer which went to his liver, and I couldn’t cope with him at home because of the pain relief and hallucinations. I felt terribly guilty when he went into the hospice because he wanted to be at home. You have to balance what your husband wants v what you are able to do and don’t feel guilty whatever you decide.
Having said that, you’ve already done the hardest bit, the hospital bed was my lowest point too. Once they can’t get out of bed it gets weirdly easier because you’re not on alert for them falling or needing anything. The world almost goes on hold while you wait for the inevitable.
Hang in there and take any support offered from those friends ho have shown their worth.
P.S- contact Citizens Advice or the hospice to get help on PIP, they often deal with DWP when they get decisions wrong. You don’t need to be dealing with that just now.
so sorry to hear your story i to was alcoholic a year ago in hospital they told my wife they were going to just keep me comfortable they thought it was the end when i come out i started reading stories on here like yours it just snapped me out of my addiction to drink not touched it for 12 months now still need a transplant my heart goes out to you for you writing your story it my stop someone to stop drinking just like me
Very brave of you to compose and post your thoughts and current situation so eloquently. It’s always heartbreaking to read posts like these and I can offer no practical help other than to say you are in my thoughts and prayers. He is very lucky to have you but then when you love someone you do everything you can to help them in every way. Like others I wish you strength going forward and strength and peace in the aftermath.
How well you have explained your feelings and I feel your pain so much.My husband wanted to be home at the end but actually said to me that I couldn't possibly cope with looking after him. He resigned himself to being in the hospice but still talked as your husband does about future plans.
Just take each day as a bonus and never give up hope but look after yourself too.
Ive read your posts in the past but not responded, but this time I feel I must. Such a wonderfully well written post when you must be feeling so totally worn out, both physically and mentally. Alcohol is a cruel mistress and doesn't care who it hurts. The person we love disappears. You may not realise how brave and strong you are, but you are. I didnt have to deal with the amount you have as my husband was an alcoholic and has AIH he stopped drinking nearly a year ago (slowly improving and now compensated) he was a covert alcoholic and hid it everywhere, I still find myself watching him and looking for it. Even though I know he stopped drinking. I still haven't felt like my old self as I'm still exhausted and anxious that it will all start again. It took so much of me to keep going. You must be kind to yourself and even a little selfish without feeling guilty. You are now the most important one.
There is such stigma attached to alcohol and I too found who I thought were friends disappear as they made me feel it was my fault. Now hes well I've not bothered contacting them. Please keep us updated and rant away if it helps xx
Bless you, thank you for your honesty and insight. It is such a cruel disease that turns people into a shadow of themselves. We will all be thinking of you and sending love and support xx
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So very sorry to read your post. My father died from bowel cancer last November. He wanted to come home from the hospice and as a family we are so glad that he did. He had the hospice at home team come out to carry out his personal care, two to there times a day, leaving us with quality time to just be with him. When he passed we were with him and there was no pressure to leave him, grandchildren came to visit and say goodbye, everyone had time to be with him before we called the funeral directors to collect him. We did worry that we would feel uncomfortable to have him die at home, but he loved us and I feel closer to him at his and mum's home, than I do anywhere else. It's a personal choice but I thought I'd share something positive about it. Good luck with whatever you decide as right for you both. Sending love.
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My Final Posting..
Ascetic drain finally
Real tough time of late
Home Again with My New Liver
