Our story is long. Where to start?

Our story is long. So much to tell but where to start?

Daniel was an actor, comedian, dancer, singer and teacher. He was a father, son, partner, uncle, grandson and friend.

Alcohol took Daniel away and destroyed everything he loved. This addiction, disease is one of the worse to see. It gradually takes the person and slowly the family watch their loved one die from an almost slow suicide. At first family and friends try to pour the alcohol away, reason with the alcoholic, beg them to stop. The alcoholic hides it and becomes cunning and secretive in denial of addiction.

The family try to cut the funding off to get between the alcohol and the addict its pull is strong the addict fights back and looks for other ways, perhaps stealing, losing all their morals, manipulation of other unsuspecting people, old friends, ex-lovers etc anything to get the drink. 

Not bad enough to go to rehab

Eventually they admit they have a problem and try to get some help. At this stage Daniel was told he’s not bad enough to go to rehab. I questioned how bad do you have to be? I had no idea what was to come. 

They use alcohol to help with mental health, depression, anxiety which all get worse from drinking. They are functioning to start with, holding a job down, keeping family going.

Gradually they miss days at work, a weekend off leads to Monday off because of a heavy weekend. Vodka is chosen as it doesn’t smell it hides the alcoholic more. 

Direct family start to feel isolated and alone and with young children there is not support in the day time. Mummy can’t leave children in the evenings when daddy is drinking so can’t go to Al-Anon and knows nothing of any other support available. If she says something, social care will come in and break the family up and the alcoholic will lose his job so she says nothing. Money is tight when it shouldn’t be and people start questioning why there’s no money when he’s got a perfectly good job. We get credit cards to help sort the situation and start getting into debt.

Daddy wants to see his children

Eventually something has to change. Unable to keep pretending all is ok she leaves the family home taking the children away and begging him to get help after yet another drunken argument about nothing really important blown out of proportion by alcohol trying to destroy everything. 

Social services step in and some young social worker with no clue turns up to try to “help” by this point we are trying to get through each day, daddy wants to see his children and is trying everything to claw back everything he’s lost. Social care isn’t all trained enough and naively say daddy can see children as long as he hasn’t had a drink. 

Routine and support

Dan did exactly what the social worker said… No drink, cold turkey and met at the park the children were 4 and 6 he seemed ok, calm and no alcohol. Half an hour into playing in the park, he turned white, said he felt strange and suddenly flew backwards onto the children’s play equipment and started fitting in front of several children. As all the parents ran towards us, I was shaking out of fear, had never seen a fit and didn’t know what was going on. The ambulance arrived and our children were very upset. Turns out suddenly stopping drinking can cause seizures. These get worse with each detox and alcohol induced epilepsy is diagnosed. Also, Daniel shattered the bones in his hip and was told he had osteopenia. Six weeks on morphine and no alcohol. (Oh this is what the doctor meant by ‘not bad enough’).

Daniel eventually went to rehab in Portsmouth, aged 35. He made friends with people from AA. He worked through a lot of stuff going on in his head. He became a nicer person. Three months of routine and support. Unfortunately, Daniel didn’t want to do the next programme and refused to stay another three months because he feared me and the children would leave him. He was scared of losing family. When he got out, instead of coming to us, he went into a dry house and was put with someone he didn’t know. His anxiety was high and he relapsed three days later. He went back to drinking as much as he had before. He loses his place in the dry house, moves back to a house of recovery where others are taking drugs. They asked him to join in—thankfully he didn’t, but I could see how easily someone could choose that path as well. 

‘I can see behind me’

He then tried to cut drinking out again. Cutting down gradually. He had several fits leaving to one massive one in my car when I took him to an emotional well-being course we had decided to do. He was fine during the course of 2 hours. Got in my car he had cut the vodka down and was taking a little like medicine to stop him fitting. We went to get lunch and he said, ‘I can see behind me’. Suddenly he had the biggest fit I’d ever seen. I was terrified. I shouted out the window for help and someone rushed over and called an ambulance. He started going blue, and sounded like he was choking. After what felt like a very long 10 minutes, the ambulance arrived and took him straight to hospital. He was close to having a heart attack. He had had a stroke a few weeks before while we were out for a meal. The restaurant had to call an ambulance while everyone was panicking, all being witnessed by the children.

The hospital saved him again, detoxed him and sent him back to his house. The drug dealers left the property and he stayed off the alcohol. He decided to get a job, and worked at the YMCA. He rang the children a lot and we saw him most days. He then decided to give up his flat back to the housing agency who had housed him. He didn’t tell me he was doing this and made himself homeless. He moved to ours, which meant me driving him to work. That was okay, apart from when he finished very late. He was struggling with mental health and anxiety, with chronic depression. Some days he wouldn’t get out of bed. He relapsed again and was hospitalised fairly quickly. Each time he fitted he broke a bone and now had osteoporosis. He struggled to walk and stopped working at the YMCA. 

Lockdown happened

Lockdown happened and he was doing well not drinking and organising us all, teaching the children and throwing himself into making sure they were okay. He taught our daughter lots of maths and our son various work. He properly home schooled our children.

As the lockdown lifted he relapsed again this time more than ever. It was 2020, Christmas time, and he was starting to get more ill. He was ordering vodka online and had cut me out of the bank account. I spent most of the time trying to stay out the house during the Christmas of lockdown. I couldn’t go anywhere. He had falls and fits and went back to hospital several times. I sent him to hotels, and was trying to keep the children safe from it, all while helping him.

From then, 2021 was crazy. Each month he would relapse and go to hospital for at least a week each time. This went on all year, until in 2022 he decided he had enough of being in hospital. He couldn’t walk much, was struggling with incontinence and relapses, he was tired. I was washing and dressing him, I needed him to be on a ground level. He couldn’t get upstairs, he was sleeping on the sofa and being sick a lot. 

I begged for help from the council to house him but without making him homeless but they wouldn’t. He went into homeless accommodation at a disabled hostel for a temporary time it was horrendous! Hated going there, he was surrounded by drink and drugs and some horrible people. He was a very clean person, hated not washing, but couldn’t do it a lot. He spent days sitting/sleeping in a room. I took him food and begged for him to be moved to appropriate accommodation. Finally, in 2022, after 2 months of hostel they found a new build flat that was perfect all ground level and easy to access. I moved him in and could look after him. I went between mine and his and we got the children beds there too. 

Declined disability because he sounded fine on the phone

He had a few more fits went to hospital had been diagnosed with liver cirrhosis and was under a liver specialist. I applied for disability benefits for him and they declined because he sounded fine on the phone. I had to really fight to get him anything he needed and because he was only 41 no one was listening. Adult social care put him on a waiting list. By this point he was very ill. Finally he got the disability payment which opened up more care. We got a disabled badge so I could get him closer to hospital. We borrowed equipment from friends a zimmer frame and wheel chair. The main problem was on the phone he sounded absolutely fine, he would say he was okay and they discharged him several times. I would ring and explain he’s not okay. It got exhausting. He would say it’s because he’s alcoholic they wouldn’t want to treat him. 

August 2022, he was given an appointment to be assessed on the 19th. 

On the 9th it was our sons 12th birthday he ordered loads of presents for him off Amazon and some presents for me and our daughter. Our son begged him to go to hospital. He had turned yellow. I rang the doctors. They wouldn’t come to the house. He had to go there, but he refused. I called ambulances, he refused to go with them on the last 2 occasions. I spoke to a dietitian because he wouldn’t eat. The dietitian wrote to the doctor and they rang me giving him an appointment which was to be the 16th August. He said he would go. I washed and dressed him shaved his beard and at 4.15 we went to that appointment. The doctor took one look at him and called an ambulance. Daniel still didn’t want to go and the ambulance had a 3 hour wait time at least. I said I’d drive him. With a lot of persuasion from the doctor and me and telling him to go for his children if not for himself, he agreed to go. 

I drove in almost silence as fast as I could. Praying he wouldn’t change his mind although I wouldn’t have let him. He couldn’t walk, so I got a wheelchair and pushed him across the car park to A&E where there were people queueing outisde to get in. It was packed. He begged me to take him home I pushed past the people who all parted as they looked shocked at how ill he was. A nurse came running to us and called me to follow her saying ‘being that colour gets you day tracked’. 

I couldn’t be in two places at once

I felt emotion and relief we were in the right place. He was put on a heart monitor in ICU. It was silent, no patient made a noise they were so ill. He eventually moved to the cardiac ward with his heart monitored from ICU. He stayed in this ward for a week in a side room because he had CDIFF and sepsis with decompensated alcoholic liver cirrhosis. He started to get better. They took him off the heart monitor and moved him to the gastro ward. He had severe bowel problems and they need to investigate. His PSA levels were high and he had several infections and no immune system. He was very emotional and cried a lot. I spent all the time I could there, but it wasn’t enough he begged me to stay longer. I was snappy and at times I left crying because I couldn’t be in two places at once. My mum was having the children a lot and I felt guilty leaving them each day. 

I was dreading the bank holiday weekend because I knew it would be harder. I saw him Saturday and we talked lots. I washed and dressed him because there weren’t many staff there. On the Sunday his mum came to hospital and we saw him together. He was agitated and upset. He was struggling with shortness of breath but said he was okay. We left and I arrived home to a pot plant on the doorstep with a note saying ‘I know it’s hard but I love you’.

He then rang me at 8.30 and I said thank you for the pot plant and card. He had also sent a blanket. He was surprised they arrived on a Sunday. He told me he loved me and I said I love you too, I’ll talk to you later. He sounded tired and said he felt more out of breath. I told him I’d see him Tuesday because I was exhausted and needed to spend a day with the children. 

I questioned if I should go or not

I missed a call at 1.30am and tried to ring straight back but he didn’t answer. The next day he didn’t ring or text I rang the hospital and asked if he was okay and they said he was fine he was eating, drinking and was okay. They said they would call if he wasn’t okay and that I was not to worry. Have a day off. I thought maybe his phone was out of reach and he couldn’t get it. I questioned if I should go or not and decided not to. I spent the day with the children and friends. I left early Tuesday morning to get to the hospital and I was 10 minutes away when they called to say he had been taken to intensive care and could I go now to critical care unit. 

I got there and waited in a room outside for a doctor and nurse to talk to me about what had happened they said he had lost oxygen and at about 6am they had decided to put him on the ventilator to give his body a rest. The machine was breathing for him but all was ok. It was only the one organ being supported.

The next day, a doctor explained his liver wasn’t working at all but everything was going in the right direction. He would need care for the rest of his life, but if they can get him back to a ward he would be ok for a few months. But he couldn’t ever go home again. There was a possibility he was brain damaged, too, from the lack of oxygen, but they couldn’t tell yet. He listed about twenty things that could go wrong and if they did he wouldn’t survive. Also, if his heart stopped they couldn’t resuscitate. If his kidneys start to fail, that’s not good, if he gets pneumonia, that’s not good, etc. I left the hospital with little hope, I messaged his friends and family. A few came to the hospital over the week. 

He was very unstable, too unstable

On Thursday they tried to decrease the sedation. He had two fits in a 24-hour period and bit through the breathing tubes which made any progress he had made go back to the start. They paralysed and sedated him again.

Friday, he had one dilated pupil, one not. They said it indicated brain damage. The catheter bag had changed from yellow to red and I asked if he was in kidney failure and they nodded. 

Saturday he was starting to lose oxygen and the machine was struggling to keep him alive. He was very unstable, too unstable too turn. The fluid was rising up his body and had gone into his lungs and he had pneumonia. 

Sunday, his mum came we sat in the family room and the doctors told us they were going to turn the machines off. There was nothing more they could do. They said they would do this Monday, in a controlled way.

Monday, we went to hospital for about 10am to hold his hand while they let him go. We waited in the family room together. My mum and friend Lou, his mum and step dad. They came in and said they had something they needed to talk to us about and they had just found out he’s an organ donor. He had expressed his wishes on three occasions and one only a week before he had gone into critical care. We talked it through for three hours then another two hours filling in the paper work on which organs and tissue etc they could use. We signed over his body. To them it was unreal.

They had 24 hours to find a match. Then he had to die within a four hour time frame. I didn’t sleep at all. At 6am, Tuesday 6th September, I got a call from the hospital saying they’d found three matches and were getting ready for them all. I couldn’t drive for the first time. I felt unsafe and had to get a friend to drive me. We were staying with my mum at this point. She was looking after the children.

Playing music and talking

I was driven to the hospital my mum had phoned his mum and she was on the way too we all arrived about 9am at the same time as had got stuck in rush hour morning traffic. We spent an hour with Daniel playing music and talking to him. 

They decreased his sedation in preparation for the next bit. He responded to me touching his head. I stroked his hair and told him it would be ok. The doctors came in and said they were ready. He started to panic, trying to breathe on the machine. I told him I was with him he knew what he had to do, and if he stayed calm he would be okay. I would hold his hand all the way and be there. He relaxed. 

We walked slowly to theatre where they took the breathing tubes out and put the end of life injection into his arm. They played the song ‘Amazed by You’ by Lonestar. We held his hand and watched the monitor go from 100 to 50 to 30 to 15 someone touched my arm and said he’s passed. I turned back to the machine as it zeroed and the song ended. He took two last breaths and was gone. 

We had to rush out the room as the surgeons rushed in. We went straight to the family room and sat in shock for a while before leaving to go to his flat. 

That night I went back to mum’s and with my family we told the children daddy had passed away. We told them to be proud, because daddy saved three people’s lives and would help many more.

They were silent for a bit, then they asked questions. ‘Why couldn’t daddy have a new liver if he could give his organs?’ I explained he was too ill to have any operations. 

I’m going to stop the story for now. There is so so so much more to this but this is a basic run down of what happened. We are exhausted, emotionally drained and have lots of mixed emotions. 

Children of alcoholics and families will understand our story. We will write Daniels book one day. We got the letter to say he saved three people. We are proud of what he did in the end. He wrote diaries and these explain the addiction from his point of view, so we will publish these.

I just hope we can help others with the knowledge we have and I hope we can save others from this family disease. 

Lucy

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Lucy has worked with the charity AdFam, who help families affected by addiction.