Dear Dementia Diary
It was a pretty bad evening at the dementia home and on leaving I decided to walk across at the bridge before going home. I soon realised it would be quite a while before I could walk across that bridge alone again. I had walked more than halfway across the bridge and it took every fibre of mental strength I possessed to complete the walk to the other side. I was terrified, because I ha been possessed by this almost overwhelming, real, physical desire to throw myself off. I don’t know where it came from, because that’s not me. But it was real enough.
Me is: hating a situation and being in a private mental state of despair, but never outwardly panicking: surviving one moment at a time until it passes. The urge to jump was powerful, and I could barely control myself. There was a strong physical part of me that had clearly had enough and considered a one hundred foot terminal drop as an okay thing to do on a nice evening.
It wasn’t over. I had managed to cross the bridge from where the panic attack started and suicide urge had followed. On the other side I had to confront another challenge. My car was back on the other side of the bridge. I had crossed the bridge to feel the wind and to enjoy the view to drive away the trauma of seeing Mam in such a bad way. It had turned into a physical and psychological survival challenge.
I re-crossed the bridge and must have looked a right zombie, moving from one part of the structure to the next holding on for dear life. Interestingly, inside the car I felt no urge to drive the car off. Probably for engineering reasons. I would need a sturdy ramp and a large crane.
I am not sure if I'm dismissing something significant by calling it a panic attack, because if that's what it was then it was pretty complicated panic attack. One for the books. This had nothing to do with hyperventilation and a paper bag.
I used to enjoy walking across the bridge but I will have to lay that delight aside for a while.
When I arrived, I was told that Mam had been okay-ish, which raised my spirits no end. Her Vascular Dementia had temporarily parked itself in a lay-by somewhere. Then she just crashed and collapsed in floods of tears and cries of anguish and agony.
Mam was so distraught I got down on my knees beside her chair and gave her a long hug telling her I loved her too. Then the raspy breathing started and I kept gently pulling her hand away from her chest to try and stop what was obviously building up to a panic attack, reinforced by the rasping breath.
Mam was crying that she wanted to go home and my standard lie of 'We'll wait for my brother to come and pick us up,' didn’t work. But I kept using it because it was the only tool I had left in my dementia management box.
This is the type of hear-breaking event you manage as best as you can. You just hold on as strongly as you can and hope that love can help, because in such terrible circumstances as these that's all you have left to give.
A Historical Perspective for Carers Everywhere
In a time of great poverty at the turn of the last century, people in the countryside would die of poverty. The illnesses that we are able to treat so easily these days were killers a hundred years ago, quite simply because people could not afford to pay for medical care. This is before the wonderful National Health Service. At that time, my great grandmother, who was a chapel woman, told my mother.
'We are being tested, she said, 'Not to show we weak we are, but to reveal to us how strong we can be.'
Once we somehow found our way into a temporary haven Mam's designated dementia carer, Vernon - an absolute bloody saint - asked if I wanted him to fetch the nurse. When Janet arrived Mam was up on her feet and insisting on going home. I wanted to stick her in the car and take her home.
I couldn't care for her and, anyway, I had legally signed her care over to the state and dementia care home, otherwise no-one would legally have taken the responsibility for her care. It would have been kidnap.
Me and Mam, 'Thelma and Louise's less good looking brother'. Runaways from the dementia police.
I told the nurse I was worried that it was an UTI (Urinary Tract Infection) again, because her condition had deteriorated to becoming deeply anxious so quickly. I asked if she could have something to take the edge off her anxiety. I reminded Janet that Mam’s notes said that there was a tablet that she could be given in such distress.
Mam sat down and whispered to me that she had wet herself. She felt so mortified even in the advanced grips of Vascular Dementia. It is a cruel aspect of the different dementia types that a person does not succumb quickly but drifts painfully slowly. That’s not entirely true because some people seem to decline so quickly that the loss to friends and family is immense; however, the dementia patient is embraced by hallucination and delusion and can pass a great of his or her day completely elsewhere.
One absolutely wonderful gentleman still believed he was on the ship on which he used to be the captain. He used walk along the corridors of the home asking if everyone was enjoying the trip and telling them that the sea was quite calm today.
So much is lost, but a great deal remains after the memory fails them badly. There is a great deal of joy to be found, but these moments eventually become disparate islands in a vast sea of pain. You do not know where these islands of calm and delight are, you just hope you are there when your loved on or any dementia patient hits land so that you can share in the joy.
You would be surprised what recharges your batteries as an exhausted carer. These little events that mean very little to other people are like a currency you eagerly share with people, a box of nice chocolates that sustains you for a little while. It's enough.
Two dementia carers took Mam to her room while I went to find a wheelchair that one of the patients wasn’t trying to dismantle.
Once a mechanic, always a mechanic. If hallucination turned a wheelchair into a car that needed attention, then that’s what it was. If you were kind and respectful in your caring , you could sit by the gentleman mechanic and be told what he was doing and what part of the engine he was holding in his hand and 'Who was the bloody idiot who fixed this?' The important thing is just to be there. Nothing else is required of you really . Don’t bother bringing any pity with you, just care that the person is busy fixing a car and is a nice and safe elsewhere.
I found a wheelchair and dropped it outside Mam’s room, where I was beset by Gwendolen. I said hello and was also having a brief conversation with one another carers, Mam’s favourite son, Vernon. Gwendolen got very het up because she thought we were talking about her.
Margaret told me that she had lost an x-Ray. I didn’t understand, but I listened to her and we both tried to work out where she might have put it. Then once she found out I had brought chocolate biscuits with me, she declared aloud that she wanted to be my friend. Margaret really is a wonderfully sharp lady. A ferocious enemy and ferocious friend in her time, I imagine. A lady who likes to go out now and then and have a ‘Faig’.
I was talking to one of the carers and it turned out that I had probably helped her mother quite a while back. There have been so many by now that I cannot remember. But we discussed the case of her mother being attacked by an unfortunate person suffering from paranoid schizophrenia. We got compensation for her criminal injury.
She was happy for that and wondered where the six foot something giant was these days. I suggested that he was probably sectioned and still in Broadmoor wearing a sombrero and pretending to be Pancho Villa’s bike. It got a laugh. They were rare things right now.
Gwendolen cheered us all up by dancing. She had decided she was going to be one of the Tiller Girls tonight and was wandering about with her nightie tucked into her knickers. Nothing could be done or said to persuade her not to do it. When Gwendolen started flinging her arms around you were in danger of an injury.
I had bought another box of biscuits with me tonight and left it discretely in the kitchenette. An invisible gesture of appreciation is recorded somewhere in an infinite Universe maybe? Just maybe. Then what? It’s too late for what I really wish for. It’s already gone, leaving a familiar outline full of anguish and labelled 'Dementia Patient'.
It was a sad end to a sad evening. To compound this sadness, I remember that there is a bit more paperwork to do to fully release my mother's bank accounts. That is yet another monster waiting to be confronted. I am appalling at any form of administration.
I am possessed of this pathological aversion to order. It's like living to accommodate the world's demand rather than living and make the world accommodate mine. That's not an unfair a demand, is it?
Oh yes, Nell was going to sow the hem on one of Mam's new trousers. I told her I didn't want to thank her there because I’ve learned that thanking someone too early, before a job is complete, attracts the attention of malevolent spirits who usually turn up and cause havoc.
I was admonished kindly and told that 'Thank you' was enough and to stop thinking like an idiot. Even an insult from a loving friend counts as affection if it comes with a thump on the shoulder.
I'm not sure that I'm feeling ill because I'm tired or I’m tired because I'm ill. Amazing how quickly you can be worn down when your soul is full of despair. All I do know is that I am exhausted most of the time. I suppose the simple fact that I am incapable of getting to bed before 2:00am doesn't help much. Also, five or six days a week visiting my Mum can't be helped, But it's who I am.
Then there's the lack of time to even potter in the garden. I could achieve quite a great deal- at least I imagine - if I were to have more opportunities to potter. Pottering is all I'm up to these days and to be honest, it's all I want to do. ‘Pottering has a Purpose’. That’s on the list for my millionaire-making T-shirt company.
Sorry, wrong life. That was another one. I’ve read recently about Quantum Entanglement and Multiverses. I am pleased to note that there’s a very good chance I am deliriously happy somewhere else and having plenty of sex. I hope I am leaving a false name. How irresponsible of me.
Mam's well in that Universe too. It's where you can buy a tablet in the local pharmacy to stop dementia. It's next to the paracetamol. It's a good universe.
Work is a curse and it’s coming in thick and fast. Many are chickens coming home to roost. I'm in fear of a few chickens coming home to roost myself. The thought of the debt I built up with my tens of thousands of miles of Four Wheel Psychology with Mam (nice times) makes me feel terrible.
Mam’s bank account was closed as soon as she went into hospital for her first extended period. How it was closed and who gave instructions for it to be closed, I do not know. All I know is that there was no Mental Health edict in place at that time, no Deputyship or any form of inferred Power of Attorney.
So, there I was, the poorest one in the family doing the vast majority of caring once Mam had gone into hospital and then into a care home. Over a long period of time the cost of petrol and clothing became crippling.
The joy of sharing a box of Roses chocolates each night doesn’t count as an expense, because it always brings nice responses from the residents/patients – especially the dementia carers (Vernon in particular) who fall on the remainder like a pack of County Councillors at an unexpected free buffet.
Your Own Mental Health
Being a family carer for someone suffering from any type of dementia can be very exhausting. It is very important that you look after yourself otherwise you cannot fulfil the role that you have chosen for your self, or find yourself in because of circumstances.
May I respectfully guide you to check out these links, which I hope you will find useful and supportive.
My annual clock tells me I'm waiting for Easter. Why? I don't really know it's just something that I realised today. It probably has something to do with the garden. I have plants garden-ready and would like to spend all day cleaning out the greenhouse and repotting. I realise that I need some polystyrene to reflect light at the plants in back under the shadow of the trees in late afternoon. I have mentioned it to myself on a number of occasions, but clearly I wasn’t listening.
Forgetting is something that's becoming more and more prevalent in my conversation these days. My cousin tells me that her friends complain as well. I suggest that it is tiredness; that kind of tiredness that has crept up on you over a very long time. I don't think it's the bastard illness. She tells me that she cannot remember the thresholds that have been changed in her job. I suggest to her that's what notes are for. Why spend time memorising barcodes – Rhetorical question.
So I am here waiting for Plan B to come through. I am waiting for Santa because I no longer believe that I have the strength to remain committed to anything much. The sense of tiredness is growing. I have to do something about it otherwise it will see me off. I know that I am in the Danger Zone age-wise and lifestyle-wise.
Onto the subject of retirement. I have left it too late. Retirement for me will be a poverty-stricken affair. I have barely any savings left and was thinking tonight about the financial burden and moral dilemma I'll be dumping on my family when they are confronted with the bill for cremating me and putting my ashes down with my Dad.
They’ll miss me when I’m dead. That’ll learn them.
My face hurts today. I am so ridiculously tired. I am so tired that my tired has decided to marry my inertia and its product is a typical sense of barely controlled despair. My face really hurts.
I need to phone my cousin about the proposed visit to The RHS Tatton Flower Show in July. The plan was that I will set off from here on a bus trip while she would set off, similarly transported from where she lives, and we would meet inside. I am to wear a carnation in my lapel. It’ll be crowded so I’d better get hold of a bunch to wave. There is, however, a potential problem in that there is no guarantee that the local trip will occur. Depends on how many people put their names forward.
Lunchtime today at work. Nell tortured me by describing all the ingredients in her salad: quinoa, olives, feta, seeds and other exotica that I don't believe exist. It made me tell her that I hated her. Not true. So, it was a trip to Morrisons to peruse and raid their salad bar.
Supermarkets really have me sussed to a T because I left with the said salad, a large piece of smoked cod and mussels in a white wine sauce. I've been considering these latter little critters for a while and, as they were only £1.92 discounted price, I bought one and now have to eat them. I'll do that tomorrow evening so that if anything goes wrong I can vomit in the local sports centre and be the centre of attention, which of course I detest.
Relationships in work are very strained and I believe a few of us that are the workers wish we were no longer there. Pottering in a garden is Nell’s and my plan. When I say to Nell that I want peace and quiet, she answers that I'll get that in my grave and I shouldn't be in too much of a hurry.
I keep thinking about a documentary about the beautiful Karen Carpenter who was so caught up in problems and other people's agendas and deadlines that she ran out of time to save herself.
I should say that I’ll cross that bridge when I come to it. But I won’t.
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