It has been a long time, over three years, since my last post.

In fact, I am sad to report, that on the 23rd January 2012 it was also Paul's Last Post. He finally succumbed to the dreaded alcohol and his liver simply couldn't cope any more!

It started a couple of weeks earlier at the weekend when I was with him. He had a fall whilst attempting to go to the bathroom, and unfortunately, I couldn't help him to get up so had to send for an ambulance. When they arrived the paramedics checked him over and advised him to go to hospital because his blood pressure was very low. He refused...as was his right.

They helped me to get him into bed and went on their way. A few hours later, he got out of bed to go to the bathroom again, and had another fall. Again, I couldn't get him up off the floor and this time he refused to let me call the ambulance, saying that if he went into hospital it would be for the last time...he didn't think he would be coming home again.

It was a harrowing situation. He was laid on the floor unable to do anything for himself. I cleaned him up as best I could, put a pillow under his head, and covered him with a duvet. He spent the next 12 hours there, unable to move and unwilling to let me call for assistance.

I told him that he needed help and chided him saying that he was being selfish, expecting me to sit and watch him suffer, lying on the floor like a dog, waiting for him to die, and he finally allowed me to phone his GP for advice at 3pm the following day. Her advice was to get him to hospital immediately because if he didn't go, he would almost certainly die on the floor, and very soon. He finally agreed to go and again the ambulance was called for.

As he left in the wheelchair he gave me a feeble smile, and something inside me knew that this time he might not make it through. I followed him to the hospital a short time later and by the time I arrived he was already admitted and wired up with numerous drips attached, and he had slipped into a coma.

I was invited into a consulting room by one of the medics and asked if I was aware of how seriously ill he was. That hit home and it was at that point that I asked if I should be saying "goodbye" to him. The answer was affirmative. We also discussed Paul's last request which had been to not attempt to recuscitate him and the doctor agreed to put a DNR notice on his medical notes.

This was something that Paul and I had discussed at length in the time we had together. The first time he had been "brought back" was such a traumatic experience for him, and knowing that his condition, without the self-help that he was not prepared to give himself, was terminal, he had told me that he had lived a good life, and was prepared to die. In fact, he WANTED to die, feeling that his life was worth nothing and that he had, at 53, already done more in his life than most people did in their WHOLE lives. He also said that when his time came, he would die in a place and at a time of his own choosing, thus, his DNR request was, in some small way, putting him back in control of his own destiny.

He was in coma for approximately three days, and I spent a lot of time with him, just talking to him, playing his favourite music, telling him how much I loved him and how much I would miss him, and begging him to wake up so I could hear his voice one more time.....and on day four...a miracle happened!

He woke up! My parents had got to the hospital shortly before I did, and he was actually awake and asking for fish and chips because he was hungry! I was elated, thinking that just maybe, he had cheated
Death one more time. He was groggy and disorientated, and slurring his words, but he was still ALIVE!

He was moved from a side ward into one of the main wards and appeared to be continuing to improve for the next few days. Then I noticed that his catheter bag was blood red and alarm bells sounded in my head. A sure sign that all was not well, his kidneys were putting out blood and very little else. Also, when the nurses came to turn him in his bed, I was appalled to see that he had a massive bruise on his lower back. Another sure sign that his organs were starting to fail.

I didn't tell him. I didn't want him to worry but I knew deep down that this was not good. My heart broke in two knowing that this really was the beginning of the end. He asked me if I loved him and if I would be willing to move back in with him when he got out of hospital. (We had been living apart for six months. My decision, because I couldn't cope with seeing him destroy himself, but I still loved him and was with him every day and most nights).  I told him "yes" to the first part of his question, and to the second part, knowing full well that he wouldn't be coming home, I said, "It's early days Paul, we'll have to see how you get on, but I WILL come home to you, I promise".

I think he was satisfied with that answer. I hope it gave him comfort....and it was true. I would have gone back to live with him because I loved him but also because he would have needed me to look after him.

I left him with his headphones on listening to his bedside television. He was too weak to keep his eyes open to watch TV but I thought listening to it might help to keep his mind occupied.

The following morning at 10.30am I received a telephone call from the hospital asking me to attend urgently because Paul had stopped responding to his treatment. I wasn't sure, but had a good idea that he was dying. I arrived at 11.00am and he was laid in his bed, a half drunk cup of tea on his side cabinet, looking for all the world like he was asleep. I touched his chest and it felt like he was breathing. He looked so peaceful, so not wanting to disturb him I just stood at at the side of his bed holding his hand, which was warm. I stayed like that for about ten minutes.

Then a nurse came in and I asked if he was asleep. Only then did I find out that he was actually dead.
My grief was enormous, but hopefully dignified. I cried buckets of tears, not just for me and my own sorrow but for Paul who had put up such a valiant fight for so much time and finally it was over. Far too soon.

Paul had passed away just minutes before I arrived at his bedside, fulfilling his promise to me that I would not have to watch him die, and also keeping true to his own value of dying at a place and time of his own choosing with no attempt by any medics to keep him alive. He had died quite suddenly, but peacefully and mercifully not in the way he had dreaded. There was no visible sign of him having bled to death as was one of his greatest fears.

And so my story ends. Is there anything to be learned from my experience? I'll let you be the judge of that but let me finish by saying that if you care for and love someone, never stop telling them because you never know when they might not be around to say it to. Don't leave it until it's too late.

And now, I think I can answer the question, "Is there Life After Alcoholism?".

Yes, there is....for those of us who are left behind will carry on..somehow we will get through. For those of us who cannot give up alcohol even when we know it will eventually kill us, then the prognosis is not good, and I only hope and pray that in reading our story, maybe some of you will take strength from it and heed the warning. Please get the help you need and with a lot of assistance and hard work on your part, you might not suffer the way he did, and those you love will not lose you way too soon.

Thank you for reading my blog, and I hope to continue my writing so do pop by sometime in the future!

Good luck, whatever choices you make!

        
Chrissie


 

Update on Paul's current condition

Since last year Paul has been in hospital three times as a direct result of encephalopathy. We have had to give up our jobs and I am now his full time carer.

Usually, when his symptoms start its a case of getting him admitted to hospital as quickly as possible. His GP visits him at home, runs a couple of diagnostic tests on him and then if he considers that his life is in danger he will admit him.

One of the tests is the simple "clock" test. Paul is asked to draw a clock face and put the numbers around it in the correct order. Easy enough for you and me, and also for Paul when he's normal, but what he actually does is put all of the numbers in one quarter of the clock at random. Sometimes he doesn't even bother with the numbers - just a load of lines and squiggles.

The other test is to see if he can hold his arms outstretched in front of his face and keep his palms facing out. Again, a simple task, but if his hands can't stay palms out, then he's probably got the disease. They call it the "flap" test.

He's been ok since November which was the last time he was hospitalised. He was admitted and discharged within 24 hours, and then I had to have him admitted again 2 hours later. The problem was that the hospital doctors seemed to assume that he was drunk rather than encephalopathic, so they just kept him under observation overnight and discharged him the following day.

I went to the hospital at visiting time expecting him to be hooked up to intravenous drugs etc only to find him sitting in the hospital waiting room. He had apparently been there for four hours waiting for me to come and get him. No-one had bothered to call me. He was pleased to see me and asked me where I'd been. He was like a child on Christmas Day! It was not my Paul.

I knew straight away that he was far from well, but when I challenged his discharge I was told by the sister on the ward that the doctor felt that there was nothing wrong with him.

We walked down to where our car was parked and Paul tried to climb into the boot of the car. It was obvious to me that he was far from OK. I telephoned his GP who advised me to take him straight back to Accident and Emergency and insist on him being re-admitted. I think I've mentioned in this blog previously that his condition is such that if he doesn't get immediate treatment he could got into a coma and die, and as such I was absolutely livid with the hospital doctors for discharging him without giving him any treatment!

After about four hours I finally persuaded the staff at the hospital that they should re-admit Paul, but this was under protest from the staff who were adamant that there was nothing wrong with him. The next day they were proved wrong after having taken a good look at Paul, and he remained in hospital for another three days until his condition had improved.

As I write, I am again confronted with a dilemma. Over the weekend Paul started to display symptoms of encephalopathy again. Drowsiness, confusion and loss of spacial awareness together with incontinence and aggressive behaviour.

Strangely though, he appears to have picked up again without any medical intervention. This has never happened before and I have to admit to being slightly suspicious. Normally, it just one way - downhill rapidly! At present its as if he's hovering on the verge of it, but not quite there yet. I'll be watching him closely for the next few days just in case he takes a turn for the worse.

Thanks for looking and hopefully I'll be back blogging again soon. One of the reasons I haven't been on here for a while is down to my new business venture. If you would like to see what I've been up to by all means pay a visit to www.myteamshirts.co.uk and let me have your comments.

Speak soon!

Chrissie    

Don't Try To Change Me!

We think we've made a breakthrough with the twitches!

As part of his ongoing treatment Paul has been taking Propanalol tablets  - they are to help slow down his heart rate which in turn relieves the pressure on his liver and kidneys. He has been taking 4 a day, two in the morning and two at night. The other day he forgot to take his night time dose and would you believe it - the twitches stopped!

So, now we try to make sure that he takes his Propranalol tablets well before bedtime, and it seems to be working. Why couldn't his doctors work that one out?

Back to our story....

One of the first things Paul ever said to me after we got together, was "Don't try to change me!".

I have learned over the years that the worst thing you can do in any relationship is to try to change the person you are with. After all, you fell in love with them as they were....so why try to make them into something, or someone else?

So, when he said that, I promised him that I wouldn't ever try to make him into something he wasn't. I just replied, "If you want to change, you will, and I will support you all I can, but I will never try to impose anything on you that you don't want to do, or be".

It was very hard to say this. I knew that he was heading for a load of trouble because of his alcohol dependency, and I was constantly feeling angry and upset by his apparent determination to ruin his life for the sake of the drink, but I also knew that the more I nagged and complained, the more determined he would be to carry on!

I think the "change", when it came, was very gradual, and I am glad to say that really, apart from just being there for him, it wasn't me who changed him. He did it himself, eventually, because he was intelligent enough to understand the damage he was doing and he truly wanted to free himself from his addiction.

The start of this change began when, after a long night's sleep in bed, we noticed a lot of blood on his pillow.
At first, he put it down to a habit he had of dribbling in his sleep, and he blamed all the red wine he had been drinking the night before. I didn't think this was the case, but I just kept changing the pillow cases, as required, and eventually, after a good few weeks, he confessed to me that this wasn't the only problem he was having.

He was losing a lot of blood when he went to the toilet, which he said was probably due to piles but he was also coughing up blood from time to time. I immediately said that I thought he should go to his doctor, and he said he hated going to the doctors because in his opinion, they knew nothing. However, under a lot of duress he finally agreed to go and we made an appointment for him.

The doctor asked him how much he was drinking and Paul told him he drank quite a lot, and the doctor told him to cut right down, checked his blood pressure which was fine, and did a blood test to check his liver count.

One week later we went back for the results - his liver count was over 600! To put that into perspective, I had a test recently as part of my ongoing treatment for Type 2 Diabetes and the liver count was 80. I wasn't a particularly heavy drinker but was doing about 21 units a week which is 7 units too many, and I was advised to cut down my own alcohol intake. I did, and it has now returned to normal.

His doctor asked if he had cut down the alcohol and Paul said he had. He hadn't! He was still drinking as much as ever. The doctor told him that he MUST cut down, and referred him to the local Drug and Alcohol counselling service and also to a hospital psychiatrist. To be fair to Paul, he did attend both of these sessions, but in both cases the outcome was that he needed to do something for himself, and he just wasn't ready for to do it.

He did try to stop drinking. He cut out all spirits and reduced his wine consumption, and started spending less time at the pub. He started to eat properly and for the first time since we met I started to see him sober.
He was still Paul, but much more serious - no wise cracks or jokes - just, normal, and for a few weeks I lived with a new man. We ate out more and family and friends noticed a difference in him, a positive one.

But it didn't last. He was miserable all the time and really struggling, feeling that no-one liked him unless he was playing the fool and making them laugh. He said to me "That's what I do - I make people laugh!".

In the meantime, we had to change jobs. We were still in the publishing business, and Paul was still in management, but now working from Bolton which on the one hand was good - we didn't need to get up so early in the morning, and we were back in Chorley earlier most nights, but it also meant that we were in the pub earlier. More temptation and drinking time for Paul.

He relapsed and started losing a lot of blood again, the weight was dropping off him, and he was permanently tired. He was becoming very unwell and refusing to do anything to help himself.

See you soon!

Chrissie