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.
Near the end now 
Home time ! Yippee 
This time last year
Dealing with loved one who won't seek help
