Disruptive Caring

I reminded her that he was a war veteran and entitled to the best treatment. I could see ‘snotty cow’ written all over her face.

Sit yourself on the top shelf of the cereal aisle in Sainsbury’s. Peer down and there I am, doing the weekly Big Shop. Comfy? I’ll begin.

My phone rings. It’s my sister, Chris and this fills me with foreboding. Not that I don’t love my sister, I do. And I need her, and she needs me. After a minute of conversation I start to shout and yell. And when I hang up, a stranger comes over to me-a man-and he says ‘I heard what you said. I’d like to take you to an Al Anon meeting, for the friends and family of alcoholics’.

My shock at this is total. Shocked that I’d made a scene. Shocked that the whole supermarket knows that I have a family member who is a problem drinker. Shocked that a stranger offers me help, just like that.

I said no thank you. Who goes off with a strange man? It turns out that my story of joining Al Anon is not unusual. We all come to crisis point, us Al Anon members, and we all come to our first meeting with a strange tale of how we got there.

Christine rang that day whilst I was shopping to tell me that our eighty year old mum, who had just come out of hospital after a bad stroke, a stomach bleed and a long slow rehabilitation, had gone straight back to drinking. I mean mugs of Sherry after breakfast right through to whisky at bed time. I mean phoning you 10 times a day asking you to bring booze to the house. I mean dad waking you up at 2am begging you to come to Bolton to pick mum up off the floor.

But it was more complicated that that, because MY mum no longer existed. She had fairly advanced vascular dementia. It was this other person who drank, not my mum. I lost her years before: my lovely, loving mum, not this abusive banshee.

And as if there was some magic photocopy machine in my parents’ house, dad also had vascular dementia, asthma, osteoarthritis, transient ischaemic attacks, problem drinking and eventually a stroke needing slow rehab. Unlike mum however, dementia made my larger-than-life, argumentative father into a much more meek, affable chap who could still charm all those around him.

I had to go, alone, to our local Quaker meeting house. Christine didn’t want to go, I guess because it meant admitting that you have a problem to a bunch of strangers. And I cried all the way though my first meeting. I had a bad case of what Al Anon call ‘the poor mes’. They soon snapped me out of that. I was taught instead to admit that my life had become unmanageable, to focus on what was under my control-my own behaviour, not my parents' or my sister’s - and to create a list of things that I was grateful for- my 'gratitude list'. I guess looking back that was my first experience of an asset based, glass half full approach, which has come to dominate my approach to nursing. It was also my first close up look at the voluntary sector-and I became much more aware of how bloody marvellous it really is.

Al Anon consists entirely of volunteers who have passed down their knowledge in the form of 12 steps, from one generation to the next. We add a few coins to the tin and that pays for the room, the tea and coffee and the odd biscuit. We take it in turns to lead the meeting and choose a subject to discuss. We never complain about our problem drinkers. The emphasis is always on ourselves and what we can do differently. We find a sponsor, who guides us through the 12 steps-and away we go.

My first lesson was to stop aiding my parents’ drinking. No more rescuing them from falls etc. No more bringing them booze. This is hard when they’re both over 80. But there was no way that they could ration themselves. And-having run out of people that would willingly come to pick them up, they either had to avoid falling in the first place or face the embarrassment of the ambulance service. But even through the haze of dementia, my dad got what I was doing, but mum was too far gone to care.

‘She’s not going to’ he shook his head at my mum, with heart-breaking sadness. Ow, ow, ow, it hurt me so much.

This put more pressure on Chris, who took longer to defy their demands. All their friends had abandoned them by now for the same reason-requests to bring sherry, whisky, Drambuie etc., apart from my uncle and my best friend, who also refused them their pleasures. Our husbands didn't have the same level of relationship to manage their behaviour, so could rarely help other than with practical matters, like repairs.

We safely managed the detox process when they went into hospital with falls, strokes or respiratory issues (20 fags a day for 20 years will do it), getting the necessary drugs there and then trying to keeping them dry after discharge.

This was heart-rending for me-I would ring A&E and have to confess their alcohol dependency so that they didn’t start with the shakes.

My disruptive nature rampaged as I turned into the tiger-cub child armed with x-ray nursing vision, who protected our little family. My sister still thought that our parents meant what they said and did. She'd run out crying and phone me when my mum abused her about something, or forgot who she was. I found Chris an Admiral Nurse, whose role was to help her to cope. But I don’t think she ever managed to disassociate the disease from the person. Witnessing this happening was the thing that really murdered my mental health-I couldn't stand to see my sister suffer.

I went to a joint AA/ Al Anon meeting one day to hear a very famous footballer say with remarkable perspicacity ‘It’s us alcoholics that have the disease but it’s the family that get the spots’. And boy did Chris and I have a rash.

For the first time in my life, work was not all-consuming. I’d just been made a director and had about 23 staff-many of them direct reports -which was ridiculous, of course. When mum had a major stroke I became wracked with anxiety and got signed off sick. It was only a couple of weeks, but when I came back to work, the rumour was that I had a mental health problem.

My experience told me to have very little faith in the local hospital. That was over 10 years ago, and I cast no reflection on how it is today.

Some years earlier they wanted to actively treat mum -including surgically-for a couple of issues, rather than more age-appropriate conservative options. The consultants, observing my mum's extreme deafness, would talk me through the options -like I was the decision-maker. I’d turn to my mum, whom I felt still had capacity to consent at that time and explained it all again, so that she could lip read what I was saying. I'd conclude ‘This might turn nasty, but then again it might not. Do you want surgery or tablets?’ She’d say-‘I just want to be home.’

I took to attending every ward round after my mum had her stroke and cross-questioning the consultant. When I noticed mum coughing after I gave her a drink I realised that she had lost her swallow reflex and had to convince the ward staff to get an assessment. Why hadn’t they noticed?

When mum pulled her drip out I was like a broken record asking for it to be re-sited, until the junior doctor said wearily ‘ we are busy, we’ll got to it when we can.’ She contracted MRSA and I was horrified, demanding to know exactly how this could happen and where was the infection control?

Eventually came the moment when we met as a family to decide what would happen on discharge. Dad was there of course- I’d taken to parking at the front door of the hospital using his Blue Badge, as he’d done himself when he was able still to drive. Sorry about that. Then I’d find him a wheelchair and wheel him up. There were some serious slopes on some of the corridors and he was a big man, which taxed my feeble lungs. He sat there, holding his bride’s hand (he always referred to her as his bride) and I feared residential care for the rest of her life, which would kill them both. Chris and I always knew what they wanted-to die at home, in their own beds.

Suddenly it seemed that she woke up from dementia and realised what was happening. She looked straight at me and Chris and told the social worker that she wanted to go home. So off she went to a rehabilitation unit with a new plan in mind.

And amazingly after a couple of months she was reunited with dad in their tiny bungalow with home care 4 times a day, Chris, having now retired, visiting Monday to Friday and me Saturday and Sunday. It was risky-but the social worker was great and we agreed it was about quality of life not just safety.

Then it was dad’s turn. I was sat in their kitchen when I saw him have a mini stroke. ‘Oh’ he said lightly ‘yes they happen, but I’m always ok. ‘

I rang his GP and sobbed down the phone ‘why didn’t you tell me that dad was having TIAs?’

‘But Heather’ he replied ‘Geoff never told me’.

When the big one came I went to A&E to see him-heart in mouth. ‘Yep’ was all he could say- this man who had talked for a living. I stood behind him so that he couldn’t see me and cried quietly.

There were more battles during his recovery. I arrived one day to find his mouth full of mince pie. How long it had been there was anyone’s guess. He had a full blown chest infection and this set off his asthma. I told the staff nurse (again) that dad had asthma not COPD and could he please have antibiotics and steroids -and not just a Ventolin nebuliser. I could see pneumonia looming and that would see him off. I reminded her that he was a war veteran and entitled to the best treatment. I could see ‘snotty cow’ written all over her face.

Nothing happened. So I made an appointment to see the consultant. We met over dad’s bed on Christmas Eve. Not appropriate, I thought, but here goes. I repeated my demands for active asthma treatment, with added crying for emphasis. ‘But your dad IS being treated for asthma!’ So I told him that he wasn’t having steroids. He took away the chart, stared, scribbled and left. Dad recovered quickly after that, was transferred to the rehabilitation unit and then went back home.

Finance was another battle. Mum and dad gave Chris and I power of attorney a few years before they started with dementia. They were prone to listening to their friends and investing here and there. We set about, with the help of a financial adviser, finding accounts and consolidating them. This provided them with a regular income to pay for their home care and whatever else they needed. It also helped us when we came to sorting their estates later on.

Everything had to be done jointly, which meant me taking time off work to go to Bolton to meet Chris and visit all the banks, online banking not having been invented yet. Chris has a long term condition and is a Blue Badge holder, but despite this, parking in Bolton was tricky.

All was fine until we got to the Yorkshire Bank. ‘Well’ said the lady ‘ you’ll have to make an appointment to close the account. ‘

‘Why?’

‘It’s our policy to check for money laundering’.

There was no way I was allowing this. (check my language-allowing-OMG. ) I explained that no other bank had made such demands. I explained that I didn’t want my sister put to the stress of coming back, more parking and walking. I raised my voice -sorry- so they invited me into an office. I knew their game -to keep me from disrupting-and I stood my ground, shouting 'Money Laundering??' The account was closed in a millisecond. Christine now refers to any outburst like this from me as ‘a Yorkshire Bank Moment’. I don’t have many and they always emanate from an acute need to protect others.

How does our caring story end? Well mum had to go into respite whilst dad went through rehabilitation because it was just too unsafe for her to be alone. Mum wanted one of us to live with her, but we had husbands and lives and we knew she would just reel us in and keep us there. Of course she deteriorated. My only comfort was that she thought that she was on holiday in Morecambe. She was magnificently cared for by the local district nurses who gave the most amazing end of life care.

It was like being stabbed in the heart over and over telling dad that his bride had died, not once, but many times, because he kept forgetting. Only on one occasion did he sit bolt upright and say 'Who's arranging the funeral? Has it been done? What shall I do? Mum had left detailed written instructions, years ago and kept them in the safe. Underneath my dad had scrawled '..and the same for me'. Once I talked him through the funeral arrangements, he relaxed. All my close friends came to the funeral and he bucked up as he flirted with them all.

Dad went home without her and I stayed with him for a few weeks, leaving him for longer and longer periods until I was sure that he would cope. He lived there for 6 months, until one day he turned yellow. His GP and I were pretty sure that he had a bowel cancer and, just as with mum, I’d asked dad if he wanted it investigated and treated. Of course he didn’t. The cancer advanced to his gall bladder and that was that.

I was returning from a holiday at the time trying to get over mum’s death. Christine called me at Heathrow. It was a bank holiday.

‘The locum GP is here and wants to admit dad to hospital for end of life care. I told him that you would never allow him to die in hospital. He’s waiting to speak to you. ‘

I’d schooled her well.

The locum argued that dad needed ‘proper care’. I asked him to make a referral to dad’s GP and the district nurses. Wouldn’t they give ‘proper care’?

‘But they may be busy’

I’d never heard such rubbish. ‘Have you called them?’ He hadn’t.

Of course, the district nurses, who knew our family well, jumped to it and we had the same level of compassionate, expert care that mum had. God bless you, district nurses. I will never forget what you did.

In a twist of fate, a few years later, my friend's mum moved to a local flat and invited me to inspect her new abode. To my shock I found it was the flat that had belonged to my Al Anon sponsor, an older lady, who had now passed away. Anonymity prevented me from saying anything, so I just murmured 'Umm - lovely!' like I'd never been there before. I immediately felt a wave of guilt for not keeping in touch with her after my parents died and I no longer felt the need for Al Anon meetings. I had not done what others had done before me, which was to pass on the wisdom that had been given to me. I had just left.

I expect that you, dear reader, may have faced these sorts of situations in your own life. You will know that how your loved ones are cared for and how they meet their end, affects your mental and physical health, not only at the time, but for the rest of your life. I expect that you have reacted in the same way as I did: fighting, crying and maybe even breaking a few rules so that your loved ones get the best. Bravo.

If you are reading this and support older or vulnerable people, please listen to us carers. We know our loved ones best. We know what will make them well and keep us sane so that we can carry on. If we are disruptive, pay attention to the cause of the upset. Ask us for solutions and be our partners, I beg of you.

Christine and I and those around us, know that we did our best. This is our only comfort, during the most difficult time, other than the comfort of having each other, which we truly appreciate to this day.

But the strain of caring comes at the cost of everything else. I was demoted at work and given a protected salary because I didn’t apply for the new role that replace mine, of chief operating officer. And I was honestly glad to have lost the burden. I became more and more a spare part, and I was put at risk of redundancy.

In the next episode I’ll tell you how Take That raised my self-esteem and helped me to get a new job.