Diary Day 8
 A Dementia Carer’s Hallucination -
The Boys are Discussing the Football

There is no cure for any of the dementias. All we can offer is dementia care that is appropriate and care that develops along with the deterioration through the stages of dementia.

Football worth watching and discussing by the boys

This afternoon, David was wearing a very smart waistcoat and looked dashing as he sat next to Simon on the bed. Both were watching the television. Simon was nodding as he stared at the television and from the distance they gave a very strong impression of two friends discussing the football.

A Dementia Carer’s Hallucination

Of course, Simon was doing what he always does, his eyes were moving across the scene before him as if looking for something specific. David would be leaning over repeating the same phrase over and over intensely, as if he were searching for significance in what he was saying. Yet, from the distance you could invest the scene with a great deal of normality. But it was pathos.

And the illusion of normality is something that we, as former home dementia carers for our loved ones greet with a bitter-sweet joy that keeps us going for a short while. We know the truth; our loved one’s brain is damaged beyond recovery. Any cure is there for the future sufferers.

We are left to treasure what we choose to perceive, but would not care to have our loved ones who are approaching the end stages of dementia be left stable in that stage of anxiety and depression. We are desperate to ensure our loved ones are cared for … and yet … what we really want is for them to be released. Surprisingly, the Tummy Conscience seems to be alright on that hope.

David was last seen leaving Simon’s room pushing the latter person’s bedside cabinet down the corridor. I suggested to Dorothy that she could subcontract David to Pickfords, the home removals firm.

Dementia and the loss of dignity

Robert is leaning against his room’s door fame. He looks troubled. His eyes indicating that he is searching internally.

Robert is bent almost double these days and looks desperately frail. Gone are those days a few weeks back when I could sit with him and engage in what was a real conversation because there was a purpose to the words we were both using.

His gait is one of someone suffering Alzheimer’s disease and his mood swings and aggression are symptoms of Alzheimers. He is bent over maintaining a centre of gravity that allows him to walk, but he has slowed down enormously and I understand that his hallucinations vary greatly.

As I was saying, Robert was leaning on the wall outside his room looking across to me and said that it was running down his leg. I directed and guided him to his bathroom and called Michelle. She called for Vernon to come and help her. They closed the door and within seconds I could hear high pitched squeals and then angry shouts and commands to stop.
 
Intervention to assist crosses the lines of dignity and autonomy in all dementias. It was clear from Robert’s protests that it was a step too far. All is done with great care and kindness. I have noticed that the women appear to be much less fussed about this imposed assistance.

It is our role as dementia carers to lend dignity to those who are no longer able demand their own.

When June and Vernon come out for the room I suggest to Vernon that he shouldn't cry and scream like that because it might scare the residents.

And Later…

Robert was in a very pleasant mood later in the evening and was going around everyone sat in the lounge shaking their hands and thanking them for doing a good job. As I said his hallucinations change rapidly.

We all watched with great interest when he tried the same with Margaret. We were wondering what she was going to do. Belt him? She'd been known to do that recently, even with the staff who take it all in their stride simply comparing scratches and wounds. They make note of each event in their individual patient record files and carry on with their exhausting duties.

Anyway, Margaret actively ignored Robert until he went away disappointed. No punch up. Carers and visitors look at each other and smiled.

How much do you pay a Saint?

There is a troubled air among the carers right now. A serious issue has arisen and it is causing a fair bit if tension. Michelle shows me a letter that the carers have received from the managers.  I visit very regularly and don’t think I’ve encountered a manager yet.

A new law has come into play; one that ensures that all workers receive a minimum Living Wage of £7.50. The Economy is in a very perilous state right now and to accrue credit the Government has done the right thing, but in so doing has placed an enormous burden on employers who will have to fork out this addition to hourly pay.

Michelle’s letter indicates that for many of the underpaid workers their hourly rate will be going up by 25 pence an hour. Not much I know but better than a slap on the stomach with a foetid kipper, I suggest to Michelle. Then I read on.

There is a caveat, one that is an attempt to swing blame onto someone else, that says while the management is obliged to pass on the pay increase it is only doing it for the lower paid workers. Anyone who is earning above the £7.50 an hour and has gained these increments by attending courses or studying for qualifications will not be receiving a pay rise.

In other words, almost all are equal. The dementia carers do not hold resentments against each other, but realise their standing with their bosses, who on paper hold assets worth millions if you count the homes they possess, the one they have just bought and another they are building.

If you look at a care home as a capitalist, your most important assets are the dementia patients, because each filled bed is worth tens of thousands a year and a credit note that you can take to the bank to fulfil further ambitions for growing your business portfolio.

If you view the care home from a family member’s point of view, then it must be the carers who matter most. Sadly, we seem to have got it wrong.

David doesn’t seem to eat much

David hardly ever sits down to eat and he must be chased up and down the corridor and encouraged to take a spoonful of food in his mouth.

I have been chatting with Dorothy expressing concern about the amount that David eats when I’m there and learn that in fact he does not appear to have a full-tummy button in his brain.  Dorothy tells me if David sits down to eat and be fed, he does not stop.  You can keep giving him food ad nauseam. Literally.

Of course, said Dorothy, You worry that he doesn’t eat enough and so you give him more.

Nonetheless, David has now been changed into his pyjamas and at an age approaching eighty is very fit looking.  In his pyjamas and from the distance he looks like a Ninja Master.

Mam and her new son

Janine was fearful and waiting/looking for her Mum this evening (Janine is in her mid-seventies). She kept coming across wanting to be held. Vernon said that Janine was still seeing Sam, a dog who had been brought to visit that afternoon.

I saw Janine at her best last Sunday when she, Mam and I sat down to watch Songs of Praise.

Mam sleeps a lot and I suppose that is far more pleasant than her waking world. The carers are extremely kind to Mam and if she is embraced by their kindness she seems content and can sit there accommodating everyone and ignoring the strangeness all around her.

Mam really cheers up when she sees Vernon and I am very glad of this because it means that if I'm not there then he is. Vernon attends to her with a great deal of affection and care and she will kiss him on the cheek.

Love is Mam’s Anchor.

Return to Dementia Devotion Home Page

Return to Dementia Carer Diary

This website was built with SBI