This last three months I’ve been mostly …
As I may have hinted, things have been extremely tough since Christmas. Dad doesn’t respond to Christmas so well at the best of times – I suspect he is as ambivalent about it as I am – but he excelled himself this year. Mum flipped from being happy to have him at home to admitting that things were too much to deal with in about three weeks. Fair play to my brother for getting us to pick out a home for him because booyacka, we had it lined up. However, Mum needs care too and this home cost the same, per week, as care for the two of them did, at home.
[image error]Then, I realised Dad had run out of money. Dad and Mum kept their stocks and shares separate, which is unusual for married couples. As I’d understood it, when Dad’s cash ran out we were supposed to blat through Mum’s. Then when they got down to their last £24,250 each, they’d be eligible for whatever the state sees fit to give. Except it’s a sliding scale so it’s actually their last £18,250 that counts.
However, after an exploration on the Alzheimer’s Society forum I discovered that each person is taken separately. So I got the process in train for Dad. That was OK but the grist of government grinds slow and we knew it would take time.
Time was not really a commodity we had.
Dad reached the point where he was screaming and bellowing in rage all day every day. He didn’t recognise the house he’d lived in for 40 years but thought he lived in Eastbourne somewhere. He was anxious and angry. I am guessing he thought we’d all kidnapped him. He wasn’t even sure who we were. One visit, he was reasonably with it and asked me,
‘Why do you keep calling me Dad?’
‘Would you rather I didn’t?’ I asked.
‘Yes, please.’
After that, I called him by his name; John, until he suddenly recognised me – the trick is not to make them think about recognising you too hard – and called me by my name. Then I knew we were OK and when I called him Dad again, after that, he knew who I was, and more to the point, who he was.
That was the one decent trip. The rest were terrible. Especially the one following it. As well as shouting and railing at people Dad threw things at them, spat at them and cleared his throat and spat on the floor. His entire record collection was torn from the shelves next to his chair and frisbeed, Odd-Job-style at others. Mum had to sit in the kitchen because it just wasn’t safe for her to be with him in the drawing room. At points, even the carers had to leave him alone. He would be shouting commanding them to come to see him and yelling about what horrible people they were to leave him alone. Then, when they did, he’d tell them he didn’t know who they were to fuck off. He didn’t sleep at night for two months and thus it was that we learned how lack of sleep makes a person totally, utterly psychotic.
And so it went on.
Then, the Community Dementia Nurse came to see him for a scheduled visit. She is a star. I explained we were waiting for the slow machinations of the state and was worried about Mum’s well being in the interim. Mum couldn’t bear to see Dad suffer, and felt that if he was miserable at home, he may as well be miserable in a nursing home where he wouldn’t be keeping everyone else up in quite the same way if he started shouting at night. And also, she couldn’t cope with seeing the man she loved and had been married to for 53 years in this kind of mental state 24/7. The community dementia nurse agreed and promptly got the emergency dementia team to come and look at him.
We discussed sectioning, but Mum decided against it on compassionate grounds, because it would involve too much moving him around. They could also take him away for 3 days for respite but we decided that, too, would be unkind because it would just disorientate him more. However, they did get him off the waiting list for a social worker when the duty social worker stepped up and agreed to take him on straight away, in light of the urgency of his case. They also did what is called a cognition test, which he failed, which meant that the lasting power of attorney over his health was activated. I confess, I’ve never been so fucking glad I did anything as I am that we got that power of attorney.
In November 2017, we had a family get together and when we did, we got Dad and Mum to sign the forms for lasting power of attorney over their health. They’d done financial in 2004 when Dad realised he was going nuts. Discussing the health form with Dad, the week before, was one of to the last times I saw him able to grapple with abstract concepts. I am so glad that we sorted it out in time and more to the point, that I got a firm idea what he would want. Also I have to totally commend the government office that does this. I have dyscalculia, filling in forms correctly is my nemesis but they have a helpline and they were brilliant and endlessly patient with my dumb enquiries.
One of the areas where my brother and I are very lucky is that my parents both have a strong faith. Neither of them is afraid of death, or afraid to use the word, ‘death’. No pussy footing around calling it ‘passing away’ because the word ‘death’ is too scary for their ickle wickle sensibilities, they can look it full in the face. Neither of them has ever been afraid to discuss death, their funeral and what they would like to happen to them if they were ill and unable to outline treatment preferences for themselves. Indeed, they have always been keen to ensure my brother and I knew. They are DNR (do not resuscitate) but if you are elderly and wish this carried over into, for example, not being treated if you have Alzheimer’s and contract cancer or the like, you may need someone to have power of attorney over your health if you know they might have to overrule medical professionals, especially if. you want them to carry out your wishes not to be kept alive.
You see, back in the day, the doctors made the decisions. If someone was suffering and weary of life and they got pneumonia, rather than prescribing antibiotics, the doctors might ‘make them comfortable’. They’re not allowed to do this any more. The patient, or the patient’s family, have to make the decision, with their guidance. BUT relatives and family also have to be authorised to make decisions with the relevant Lasting Power of Attorney.
During their visit, the emergency dementia team suggested we check Dad for a urinary tract infection. This we did. He had one, but unfortunately, the only difference it made was that Dad was now more aware when he needed a wee. At the end of that week (and the end of January) I remember dropping McMini off to school one Friday and on the way home, I popped into church, lit four candles; one each for me, my brother, my father and my mother. Then I sat in a quiet corner and cried. I’m not very good at praying and I don’t know exactly what God is, whether it’s an actual entity or just quantum mechanics explained badly to simplistic people a few thousand years ago. But I believe that Jesus was ace and that there is something out there that’s really hard to explain.
Anyway, I just sat there with the situation laid out and asked whatever it is for help. That done, I went home, rang my Mum for a chat and half way through, Dad had a funny turn in the bathroom and the carer called Mum through. I cleared off the line and left them to call the emergency services. A while later I got a call from the paramedic who explained that Dad would be going into hospital for the afternoon as his heart rate was high but that he’d probably be home by the evening.
When Dad got there, it transpired he had a chest infection. He was kept in and given intra-venus antibiotics.
Mum and I had two big questions to discuss.
First, should they treat him? If they’d told us it was pneumonia, we agreed that we’d have asked them to ‘make him comfortable’ but a chest infection is different, he might feel really shit for three weeks and then recover, so he had antibiotics.
We felt that Dad was miserable and not enjoying life any more. While he was behaving like a six year old but clearly enjoying life it was different but now, definitely, he was giving off the vibe that he’d had enough. The biggest one was that he was refusing his medication. If the carers asked him, please, just for me, he’d take it but if they said it was to keep him well he’d refuse. We agreed, with my brother, that there’d be no more heroic medicine for Dad (great phrase isn’t it? This is what things like, giving someone antibiotics to cure pneumonia are called).
All meds that will increase Dad’s quality of life stay but he now takes nothing to prolong it. The doctors at the hospital commended us on this as the most practical, sensible and compassionate path. He is still taking meds to help with his gout, his Alzheimer’s, his sleep etc, things that make him comfortable or make his life easier. Nothing to keep him alive.
The second big question we had to work out while Dad was in hospital was, were we going to have him back home, or were we going to press to get him straight into a decent nursing home from there? In hospital Dad slept lots and while he was still swearing and flailing his arms around when people tried to wash him or put a clean pull up on him, with rest and proper sleep Dad, real Dad, came back to us. He recognised me on sight, knew where he lived and wanted to go home. But if he did return home, then we’d be bouncing him out again to a nursing home. Because he’d soon stop sleeping on home turf, and with the lack of sleep, become completely psychotic again.
After discussing it all with Mum and my brother, we realised we had the opportunity to speed up the system if he went to a home from hospital and it genuinely seemed the kindest course. I told the hospital we could no longer cope with him at home.
He stayed in hospital just under a month while we got his condition assessed, his finances assessed and got everything sorted. Dad is fully funded but as he has a teacher’s pension, he gets little or no actual reduction on his care home fees BUT he does pay the fully funded price, which is about 40% of what he’d pay otherwise. So the horrific prospect of the money running out for Mum’s care within the next six months has been averted temporarily. I reckon we can do a year, possibly two and a lot can happen over that time. Another year and Mum may be happy to move somewhere smaller.
Dad was assessed by a local home, which we wanted him to go into, but was considered too difficult for them to deal with. We had been warned this might happen and so the Social worker explained she’d look for homes with harder-core care facilities.
Mid February, while dealing with all this, I got flu and after five days in bed, while I was creeping about with a chest and sinus infection, we got the call that there was a place for Dad. We were offered two homes, and funded or part-funded places. Something about the way the social worker spoke about one of the homes attracted my attention at once. I looked at the information about both but the moment I saw the website for that first home, I knew it was a good fit. It was also in the right place, at the back of the local market town, reachable in 20 minutes for Mum. I rang them and they were lovely, which seemed a good sign, but I knew we had to move fast. As it was half term, my brother happened to be staying at the time so he and his little ones and Mum went and looked round. They confirmed that it was every bit as lovely as it looked on the website and the staff every bit as pleasant as they’d seemed on the phone. Also, Dad’s best friend, who died last year, was in there for recuperation after an operation some years ago. His son spoke highly of it.
So we took their fully funded place and Mum and her/Dad’s carer took him down there two weeks ago. It was a while before I threw off the infection and could visit but when I did, it felt like a happy school. There are forty inmates and I’d say all of them were up and about, spread between three rooms. The decor was a little tatty but clearly well looked after. There was a burble of contented conversation and Dad was sitting at a table on his own, quite happy and contented, looking at a tank of fish.
A lady came and cut his hair, apologising that she only had one cape for him to wear because another resident didn’t want to take the other one off! Dad and I chatted to her and that kept him from getting impatient until the very end. I left him about to have lunch. He didn’t bat an eyelid when I went, just waved me a cheery goodbye.
So far, so good. Fingers crossed.
What impressed me most about the home was that they are completely unfazed by Dad’s inappropriate behaviour. When the carer and Mum arrived all the residents were up and about even though many of them are as free of any behavioural filters as Dad. He is so much more relaxed and happy and because of that, he’s so much more with it. And it’s such a weight off knowing he’s there and OK. I hadn’t realised how wound up I was about it all until we got Dad into this place, and I began to relax a bit.
Everyone in there shouts or does odd stuff from time to time because they have Alzheimer’s. When it attacks the frontal lobes of the brain, especially, it can cause the person to become aggressive. And at Dad’s home, this behaviour happens from time to time, but they are really good at dealing with it and settling everyone down again and the attitude is so good. They stop the trouble but they deal with it as if it’s nothing more significant than spilling a glass of water. And that’s the point isn’t it? Because as they’re dementia patients, for them that’s all it is.
Seeing the other residents has been strangely cathartic for us, too. We always tell ourselves that Dad is the same as any other Alzheimer’s sufferer, we are aware that he can’t help it, but sometimes, out there in the world, we still feel responsible. Unacceptable behaviour is still unacceptable, even if the person doing it is not responsible for their own actions. And when it’s your father or your husband, it’s also hurtful sometimes, being told to fuck off. And no matter how strong and calm you try to be, you’re human and this is someone who loves you, it’s still going to hurt.
Likewise, we understand that Dad just has a disability but we still feel the pressure to manage him ‘right’ because to us, these outbursts look like distress. But in the home, with other people all around him who are the same, we realise we are not alone, Dad is not alone and that in many instances, neither he nor they are distressed much either.
Because Alzheimer’s breaks down all the filters, and that’s why many of these outbursts are a lot less dreadful than they might appear, more of a ‘pfft that’s irritating!’ than the cry of existential angst they look like to the rest of us. Anyway, we’ve seen the existential angst: days of shouting from morning to night! Nothing in the home is like that.
I think Dad’s arrival sums it up. Mum and the carer brought him in and a little old dear sitting near the door looked up and smiled at them.
‘Hello,’ said Mum’s carer.
‘Fuck off!’ said the little old dear.
Yeh, Dad fits right in.
