Non Compos Mentis - Dementia

Dementia, or Alzheimer's made itself known to me when I was about seventeen years old. It seemed to come out of nowhere, but this is probably due to my memory looking back over thirtyfive years, and my interests at the time being music, girls, psychedelics and animal welfare, rather than the slow decline of a person's mental health.

I lived on a council estate where everybody knew each other - it was a bit like Under Milk Wood -  where everybody's door was open to the neighbours at any time. My family consisted of my nain, taid (grandparents), mum, dad and my older brother. There always seemed to be relatives and friends in the house visiting my nain and taid, chattering away in Welsh, from which I used to grasp bits of what they said when interspersed with english.

I would lie on the floor watching the pipe and cigarette smoke spiral through the beams of sunlight that poured through the window. The women would be sat bolt upright, wearing dead foxs about their necks; legs draped down one side and a foxs head down the other. While thinking about the people who would visit, a face loomed up out of the past and her name was Auntie Enid. She looked on edge most of the time, but people would, after all they had gone through two world wars and lost their brothers, sisters and partners. What struck me was the look in her eyes, they were black, wide and lost. Like the blackness of space absorbing what was left of the light. This is a look that I have seen in other's, a look of anxiety, fear, confusion and disorientation. Auntie Enid may not have been suffering from dementia but, there was something about that look. This brings me to my first experience with full blown dementia when I was seventeen.

Mrs Jones was a widow who lived across the way and was very close to my nain, along with the other neighbours, who had all moved into the street after the 1st World War. They would converge in the street or in each other's houses, a la Under Milk Wood, and chat away, putting the world to rights. She was very friendly, even though young people with mohicans and spiky hair would visit our house, which, to older people at the time, would have been like the devil's from hell making a visit to Walton Crescent.

At first I didn't think much of Mrs Jones popping round to see my nain more than usual but, it seemed to me, all of a sudden, she would knock the door and ask for the time, which is fine. Then it began. First thing in the morning knocking on the door 'Mrs Griffiths Faint o'r gloch ydy hi? What time is it? A couple of hours later, the same, until it became every half an hour. I could see the strain and upset in my nain and taids face as each in turn helped her back to her house. This went on for some time until Mrs Jones disappeared and I was told she had died. What I do remember is that wide eyed look of confusion, disorientation and anxiety. Those eyes that where once full of personality and spirit had now just the faintest traces of the person we knew. Into the blackness she had drifted.

Moving forward a couple of years and dementia had started to manifest itself within my nain, who was in her eighties when the first signs appeared. The signs could have appeared earlier, but I was rarely in the house, being at that age when time spent with friends filled all my free time, which was a lot when drawing the dole.

I have a recollection at the time of being upset enough by what I saw to put it down in writing during my failed attempt at an access course in humanities. Unfortunately I'm left with little memory of nains condition, apart that is, of her slowly becoming more frail and childlike. It was easy to make her laugh, but she was now becoming more bad tempered and confused. She would forget where she was and what she was doing and if it wasn't for my mum being available most of the time, nain would have had to go into a home. I have two abiding memories from this period; the one that stands out is that nain used to have moments of lucidity when she became conscious of the fact that she was losing herself and she would cry. I had never seen this strong but kind woman cry before. It was shocking to see somebody go from non compos mentis to compos mentis and back again. That's when I realised how terrifying this disease is. The other memory came via my mum, who told me that nain had become violent and would attack my taid in the night, which must have been scary for mum to deal with.

Soon after taid broke his hip and ended up in a home, where he was happy and would sing Welsh hymns for the staff  - he always had his faculties - and where he soon after died. Not long after nain ended up in the same home, where she struggled with dementia until the end. Before she died she met her great granddaughter Poppy. We have a special photo of nain with Poppy and she has a big bright smile on her face.



In the Here and Now (November, 2016)

It's November 2016 and Dad has recently been diagnosed with Vascular Dementia (and Alzheimers disease ), which was brought on by a Abdominal Aortic Aneurysm, and so reducing the blood supply to the legs and brain. He had been suffering with pain in his legs and back for many years; trying to keep it to himself until it became obvious that he was suffering. He didn't want to worry Mum, but, if he had had the foresight and thought it through (and listened to Mum), he would have had medical help earlier which may have slowed down the progress of the abdominal aortic aneurysm and delayed the onset of dementia. A different path may well have opened up, leading to a happier end to his and my mum's life. The result is a person who now  can't move very far, makes repetitive movements and suffers a lot of pain. It has also impacted on my Mum, who can no longer go out and worries constantly about Dad, and my brother, who is my Mums carer , and spends a lot of his time making sure my Dad takes his pills, pays the bills, eats, drinks and goes for his check-ups. Otherwise he would just stay in his chair or bed until he died of starvation and take Mum with him. So kids, the lesson is, if you're going to smoke, drink alcohol and eat crap, make sure you exercise and cut it out before you get too old and become what may be a burden to others (I'm sounding like a hypocrite here). Having said that, it can happen to the healthiest of us and we have to do what we can to help our relatives and friends through these difficult times. Especially these days! The low paid and unemployed get screwed again.

My parents are lucky they have Paul around, or they would be in the situation where my mum would be struggling to look after my dad and herself until they had no option but to have a carer come in a couple of times of day to make sure they take their pills, eat and shower. That situation would certainly end up with making mum ill and dad ending up in a home. That would be a nightmare for the carer's and him. They would have to force food down him, as he will only eat certain foods, and not much of them. Perhaps if they IV'd him wine or whiskey, that would keep him happy for a while.

Dad also has kidney disease, which leaves him prone to infections. Twelve months back he developed a kidney infection which made him extremely ill; we thought he was on his way to the great whiskey bar in the sky on a few occasions, but he pulled through, eventually, after being in hospital for a week or so. You could see the way the infection affected his mind. He didn't know what he was doing - pulling his drip out and playing with it, being horrible with the nurses. Although I did notice some of the nurses being unsympathetic, which I found irritating. Okay, it's hard job, you're overworked but, it's not his fault (hmm). He was adamant he was coming home with me and it was hard work trying to get him to stay. His Doctor, Dr Bowen, was brilliant. She would call on the way home to see how he was or phone from the surgery and kept a very close eye on him. Paul had to stay there for nearly six months to keep an eye on him and help my mum with all the washing,bills and pills etc.

The memory clinic have been to see him and now he is on more pills to try and slow down the dementia. The only problem is remembering to take the memory pills. Fortunately Paul is there or phones to remind him. You can't take these pills on an empty stomach, which is another challenge, due to his lack appetite.He has to be reminded or cajoled into eating. So many pills to take - pills to thin the blood, pills to help with water retention, pills for the stomach, pills for pain, pills for the heart, Thiamine pills, but none that make you larger!

I've just heard from my brother, who tells me that he thinks he can see a difference already, in that, dad seems a bit sharper and he's more patient when dealing with mum. He can be really nasty when replying to her. We'll see over the coming weeks and for myself on Saturday.

And now to mum - what an enigma at times.

Mum has had it difficult from childhood. At a very young age she would have infections in her ears that would effect her hearing for the rest of her life. When in school she was led to believe she wasn't intelligent because of the lack of understanding towards her problems with hearing. This ignorance has stuck with her all her life. She still believes herself to be mentally backward, when the problem is that she wasn't given the support she deserved  that would have built up her confidence.

In her thirties mum finally had the mastoid bone removed, but continued to suffer infections. At the moment she suffers from a lot of pain behind the ear and shoulder. She has been told that it's arthritis, but having reread some of the articles on mastoiditis I'm beginning to think that she may have a problem again. To top it off, mum is riddled with osteoarthritis and carries a clot in her heart. Fortunately she has forgotten about this or she would have just worried herself into the grave.

Over the last few years we've noticed a decline in mums memory, which wasn't too serious and could be seen as a natural decline with age. The last six months though have seen a serious decline in her memory that's worrying. I've no doubt that the stress caused by dads illness has had a significant effect. I've been at my parents house all weekend because my dad couldn't get out of bed because of the pain in his hip and back. It was torture by words. Mum would repeat the same sentence over and over until all I could do was try and switch off rather than lose my rag too much. I can understand it being difficult for Paul having to be there over night if one of them is ill or,if I'm ill and he has to stay a while so that he doesn't pass it on. This happened last year. Paul came home, caught my cold and took it back and dad got seriously ill. You do what you can to avoid these situations or it causes problems.

Dad was visited by the memory clinic when he was diagnosed with dementia and has now been put on rivastigmine, which, hopefully, should help with the decline in memory and improve motivation. Paul thinks that he can already see an improvement after two weeks. It doesn't have any effect on the vascular dementia though. As for mum, she really needs to see the people from the memory clinic and start these tablets if possible. The sooner the better.

Another week (14 December 2016)

I've only spent one night over in my parents recently, due to illness and work. Mums memory is getting worse, along with anxiety and an inability to stop her cyclic train of thoughts. I've reminded her of some Qiqong exercises I showed her some years back, which help with pain and anxiety, but she forgets to do them. I'll try again this week.

January 17th 2017

Christmas has been and gone and it wasn't so relaxing, but I really didn't think it would be. At times I actually thought I would be better off in work, which is something I thought I would never say. The dark clouds descended and the mood was low, as dad spent all his time sleeping and barely eating. Mum was stressing about food for Christmas, presents for the kids, but she didn't have to because Paul was organising this. And I'm just a moody bastard anyway!

When somebody has an abdominal aneurysm, vascular dementia and kidney disease and they spend all the day sleeping, and when they don't, are unable to concentrate, it's difficult to pick up the beginning of an infection. Also, one of the side effects of rivastigmine is to make you sleepy. We were conscious and worried over Christmas and the New Year with dad sleeping more, along with his appetite slowly becoming worse, that an infection could be on the rise within his urinary tract. This is the last thing we would want considering that last time he ended up with a catheter for nine months. Over that period Paul had to stay every night to empty his night bag, but during the day dad was able to empty it himself, although he did have many spills. Now though, it just wouldn't be possible, he wouldn't have the energy to do it, and that would mean continuous care and staying there all day.

Week beginning 16th January

Paul has been looking after dad  for nearly two weeks continuously, as mum can't be left alone with him or she would be in hospital by now with the stress and strain of looking after dad. The doctor was called and blood taken. We finally got the results this Monday; it's an infection as predicted. He is also dehydrated, which is no surprise, so he is now on another strong course of antibiotics.

I finished work early yesterday and went to see how mum and dad are. Paul looked worn out by mum more than anything. She is like a  meerkat on speed, with dementia to top it off. She had all the brass out to clean, and then decides to go and do the ironing. She does this kind of thing when cooking. She'll choose what she wants to eat, get everything going and then decide that the cat needs to eat too. Before you know it the food is boiled dry or cold because she has forgotten to light the gas, but the cat is stuffed - probably after eating two meals because she has forgotten that she has fed him. He is so fat he can hardly move.

As usual dad was asleep. When I woke him up later he came round a bit, he actually drank some tea and ate two biscuits - result. Two biscuits is a result! It's hard getting something out of him when he's healthy, but like this its worse than trying to get blood out of a stone. I persevered for a little while and he started to perk up. There is a definite need for stimulation to help bring his mind back to some kind of reality, instead of drifting off into unconsciousness. His eyes at the weekend reminded me of my my auntie and nain, who I mentioned previously. That wide,vacant and lost in a black vacuum look, pulled away from the light of consciousness. That shook me up a bit.

Mother as Time Machine

I decided to take Friday 20th January off work because I'm working the Saturday afternoon and Paul could have the evening to myself while I stayed with mum and dad. I did what I usually do each Saturday; get a nice pizza and make mum some tea, which she really appreciates from the usual stuff she has to cook. Dad was still in bed, looking rough and still sleeping most of the time. Having said that, I woke him up and spoke to him for a little while. He lies there looking towards the east lost in his own thoughts. Mum and dad are total opposites. He barely utters a word, even when he was well, while mum talks even when she isn't talking. Every thought must be uttered, like that chattering chimp the meditaters talk of. You hear it on the bus when an old person gets on and you think they are whistling, but when you listen closely you find they are talking to themselves. Thank god mum doesn't whistle her thoughts; the result could turn into a Gothic horror.

We briefly spoke about the weather and he mentioned the hills and how they used to play there as young lads before the war. I thought 'here goes, I'm going to get something out of him,' but it dwindled away. When he's awake he's obviously reflecting on the past without sharing his retrograde meanderings. This is what annoys mum, she would love to share what goes on in that mind.

As usual mum was asking the same things over and over again - 'why am I confused today, thinking it's Saturday' - even though I told her it was because I usually turn up on a Saturday. And that's important, anything out of their ritual can create anxiety. I don't think it's just because that generation lived their lives like clock work (dinner at 12.30, tea at 4.30 etc), but that when cognition is slipping away, the rigidity of a structured day gives that person an anchor for the mind to grasp the here and now.

Another important anchor is the past. Mum has for some time now gone back to being a child, and more commonly a young woman, before she met dad. She's full of stories I've never heard before, some very funny. One was how a very handsome man fell for her, while she was being courted by another young man, and he'd been round for tea and they'd gone out to lunch. Years later she found out he was gay, which means nothing now, but in the 1940's and fifties it would have been shocking, especially in small town Wales. She has been speaking more of her nain and taid from her mothers side, when usually she would mostly speak of her fathers side and certain mysetries yet to be solved, as in, illigitimate grandmother in the eighteen hundreds - shame!

After all the grief I used to get going out and coming home late when I was sixteen and seventeen, it turns out mum would slap on her makeup at that age and go off to the pubs in Colwyn Bay and Llandudno having a great time. She would be warned by her mum to get in before 11pm, when her dad would finish a shift on the steam engines. Mums brother Jack would warn her not to go the dances where the officers went on leave, knowing what went on. After all he was a soldier. Some of mums older friends would be straight down to the dance to flirt with the officers and mum would follow them, until she got a right bollocking off Jack.