Dear Dementia Diary
Mum was seated by the fireplace wearing her pink dressing gown, which reminded me that I now had the financial wherewithal to buy a new one with her money. I’m not cheap, just broke.
When I say fireplace, I don’t actually mean that, of course. It would be foolish to have any form of fireplace in a care home ward full of dementia patients. What we have instead is a hand painted fire that is surrounded by a frame and mantelpiece that looks to me to be exactly what it is, a picture.
I don’t know what dementia patients see when they look at it. In fact, I’ve never seen any patient show the slightest interest. That which is of interest to me, however, is the small pale blue picture frame set on the mantelpiece. It is the picture of Mam’s beautiful four-year-old great granddaughter, Lilly.
It might just as well have been Elvis, because Mam only recognised it now as the picture of a pretty little girl with a lovely smile. The fact that it was there indicated that the ward’s kleptomaniac, Gwendolen, had been rifling through Mam’s room. Again.
Mam showed no sense of possession of her room. Despite all my best efforts to place familiar things like photos and furniture from home all around it, Mam only went there to wash, to change and to go to bed.
Once familiar and treasured objects mean nothing to Mam now.
It was only people that mattered. I told Vernon, that despite his best efforts he would not find his way into Mam’s will.
My pension plan involves me robbing old ladies, he said. The pension I’ll earn from working here means that I’m headed for poverty.
I’ll be there to welcome you with a stale bun, I reposted.
You’re Mam’s a very strong woman, he said. I reckon she’ll outlive all savings and the house.
Then he thought a moment. Shit! I’m sorry saying that. That means your brother moving out of his home doesn’t it? Is he aware of that?
He’s aware. I don’t think either of us wants Mam to live that long with dementia. Anyway, did I tell you about the deal I have with my cousin?
Nope, said Vernon.
If I get dementia, then she’ll shoot me. If she gets dementia, then she’ll shoot me.
Indeed, Look Out! Gwendolen was in a decidedly foul mood this evening. Those dark and intimidating shark eyes were back as she wandered around collecting everything she could and stuffing it under her sweater. That included a pillow, a brush, she had a plate under her arm, a newspaper and an incontinence pad.
Once again, Gwendolen seemed to focus her ire against non-dementia patients (i.e. me and the carers).
Margaret thought it was Sunday and realised that she had lost three days when I told her. I conceded that I usually felt that it was Friday on Monday.
Robert couldn't work out why the door to his house had a wall inside it and a toilet where it shouldn't be. He was in the loo just off the lounge and when I went across he spoke with that sad and futile whine that is so familiar to me now. I took him by the arm and led him to his room a few yards away.
His room didn't seem right either. He worked out that he must be staying somewhere other than his home and I told him that it would only be for the night and he'd be going home tomorrow morning. More lies.
I regard myself as a helper. Sometimes useful, sometimes a nuisance. I consider my role to be the maker of tea and tea cup monitor. Sofia was in that sad state continually near tears and easily upset so I gave her a couple of hugs in passing into which she reached hungrily. I am also a giver of affection. That generally goes a long way with dementia patients.
Janine was a sadder cuddle this evening, as if even affection was laced with a sense of pointlessness for her. Janine was unable to exact any warmth from it. I look forward to her being on form again and smiling, making the world a better place.
Us non-dementia sufferers are desperate for any kind normality in our loved ones. Still, it’s like a nervous encouraging wave from someone on a sinking ship.
Mum was pleasant this evening. Not exuberant or depressed, she was in an induced calm place but still fighting. Mam will never give in easily to vascular dementia and will fight this bastard disease head-to-head the whole way I am sure.
How do I know? Even in her calm state her eyes were searching like we all do when we’re trying to work things out. It was an evening for watching Songs of Praise and Countryfile again without much enthusiasm. Thankfully, these were new programmes.
I must stop watching the hymn singing because I am now beginning to see inferior movie star doubles among them. Mam reached and held my hand in both of hers and that’s how we remained - other than when I went to make tea and to share the chocolates.
When it came closer to my leaving she wanted to go home. Yet again I lied. My car was in the garage and my brother would be along soon.
We have another medical and care review next Friday. I must attend and make sure that the matter of pain management is discussed, because I believe that she is being under-medicated.
When I was at university I remember reading of a study that stated children were generally under-medicated for pain since it was thought – by some idiots – that children felt pain differently. Pain is PAIN is PAIN! And when you are feeling unwell pain seems to be the only thing in your entire world.
Mam’s pain was real, no matter the cause and she had a right to be have it removed.
As my lecturer told me, Pain tells you that something is wrong. Pain is an indicator, a symptom, and once you find out what causing the pain, then pain is no longer necessary. Medicate.
Even more important than ensuring appropriate pain management for Mam, I want to make sure that any visiting person from the local health board listens intently to the staff before rushing her off to hospital. The dementia carers in this care home know Mam better than anyone by now and I trust their judgement implicitly. Taking her to hospital causes unnecessary trauma.
We’ve been through that three times and I will not tolerate it ever again. I will take steps if it happens again. The last time Mam was taken to hospital by ambulance she did not arrive back until four o’clock the next morning. There was absolutely nothing wrong with Mam. It was an external person, allegedly with experience, who chose to ignore the dementia carers.
Tonight, Mam’s knees hurt, and she kept rubbing them.
I shared the chocolates as usual. I had bought an extra box for the staff. I was told that there was no need and I reminded Mike that the last time I’d left a little pile of chocolates on the table and said that the staff had fallen on them like a pack of voracious wolves. I thought it would save you all the indignity of looking like bloody schoolyard hooligans.
As I said earlier, Gwendolen was a real bloody nuisance and pain in the neck tonight. She would come and leer over me with those scary eyes and a scarier brush in her hand. My few attempts to engage her in pleasant conversation saved me from any injury. June, the carer didn’t though. The smart and the bruised.
The first time I talked to Gwendolen tonight she was going on about bags of potatoes being left by the gate at the bottom and she wanted to fetch some of them for tea for her children. I told her that I’d be along in a while to help.
Lying is a moral act when it is done to diminish anxiety and fear. And so, I carry on lying with conviction because it works. Each lie is an expression of love. Sounds daft, I know.
Janet, one of the familiar nurses, was on duty tonight and had just been changing a dressing on Albert who is one of the patients rarely well enough to come out to the lounge. Albert’s family had decided long ago that when it came to his passing, they wanted these dementia carers here taking care of him.
After Janet had washed her hands, I offered her a few chocs which she scoffed. Oh God, I needed that. What is it with dementia carers and chocolates?
I told the ladies that chocolates don't talk to them. They don’t say, Eat Me. Eat Me.
I was firmly admonished by Janet for daring to spoil her belief that eating chocolates was not in her control. It was the chocolates that demanded of any woman that they be eaten.
Vernon agreed. He had just found his favourite strawberry cream choccy.
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