Maureen’s dementia has changed its approach: playing a high press.
I need to revise my tactics at a time I’m short of fit players.
There were moments yesterday when I was totally outplayed.
I didn’t hear or understand my coaches’ message.
Thankfully, my Key Worker is back today.
The opposition is resting peacefully.
I’ve not had enough decent sleep.
A sinus infection is developing.
Have to blow rather gently.
Must breathe very slowly.
Play for time.
Be patient.
Smile.
There is a fundamental change in Maureen’s presentation and assessment is needed.
My priority is to minimise distress and thankfully she recognises my voice.
I still have this dreadful infection and am singing in a croaky voice.
Thank goodness for paracetamol honey and lemon juice.
Back to hand holding and waiting for the return call.
Over and out!
We had a great day yesterday with lots of laughter, song and rest. Maureen was very busy making a helpful contribution throughout the day to all sorts of things. The only thing that was missing yesterday was a carer: Girl Tuesday had been mistakenly cancelled.
It is well known that dementia that is predominantly vascular is a roller coaster of a ride; perhaps the Big Dipper. There is no alternative but to enjoy the good times and roll with the challenging moments. The danger, of course, is to think you have ever turned a corner and to accept that misused phrase: ‘that things can only get better’. However, I’m still left wondering if a reduction in the number of carer sits might be productive as Maureen feels their visits are an intrusion on our closeness.
The only problem in this dilemma is after a bad night I’m counting the hours until 10 am when there will be someone else in the house. When the ‘happy couple’ has had a good night together it is a different story: we both are, and always have been, happy in our own company. In fact, we both agree we don’t really need anyone else.
When our carer didn’t show this morning I phoned up the Agency to see why she was late. Then I put on my reading glasses and saw the red asterisk on the schedule. Had I been a little more vigilant I would have taken action earlier and Girl Tuesday would have been here. However, this is not a mistake I have paid for – quite the opposite as we have had a lovely morning together: singing to Youtube followed by a long siesta.
One of the facets of Maureen’s condition is fluctuation in her presentation. Last night we slept well together with Nurse Maureen wanting to tend to her poorly husband. This morning I have struggled to keep up with her dialogue: never quite sure if she was talking about the past, present, or future. One minute she is talking to me as her husband the next he is the subject of her discussion: I’m pleased to hear that she generally speaks well of him.
We are both still reeling from this flu-like infection. Although I’m not pleased about feeling rough I’m reassured that it is likely to be behind Maureen’s time travelling and increased level of confusion.
Straight talk as always from George Rook.
We invest in cancer care because it’s the right thing to do, and because an added qualy year of life is worth £30,000.
But we’ll only invest in dementia care if we can prove savings as a result, regardless of quality of life.
This is Moral Dissonance.
Cancer.
14 days to see a specialist.
31 days to diagnosis.
62 days to treatment.
Near enough anyway, and admirable.
When I was told I had what looked like kidney cancer I wanted to know quickly.
They said it was highly likely to be slow growing and non-aggressive, and they would recommend monitoring it rather than going through the trauma of nephrectomy.
But I wanted it out. At 64 and with other diseases I didn’t want to risk having a serious operation later when I would be less well than now.
And it turned out to be aggressive.
Oops.
If I have colon…
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Our Best Interest Discussion went well yesterday and I’m going to request that the meeting is reconvened today to explore some further thinking on my behalf.
I have chosen to get out of my sick bed to attend today’s Best Interest Discussion.
Yesterday, I was informed that the meeting would go ahead even if I wasn’t there.
Today, it’s a different story and the meeting could be rearranged.
However, procrastination is the thief of time and there are plans to be made.
Once Maureen has recovered from her infection she needs to move into Residential Care.
Just to be on the safe side I have asked an advocate to accompany me at the meeting.
I feel dreadful this morning despite following advice on how to handle this infection.
I’m going back to bed and will try to rest for the remainder of the day.
Thankfully, Chloe our most experienced carer will be here at ten.
There are times when I want to scream at those jobsworths in the Care Sector. Today’s carer has been told off for collecting some essentials from Tesco. Her Agency phoned to remind her she is here to sit with Maureen.
I have flu and am finding it difficult to stand. Maureen is very poorly as the infection is wreaking havoc with her presentation. She is worried whenever I’m not close at hand. Would the Agency want me to shop when I’m unwell and leave Maureen with a stranger? Seems to me that dementia awareness is lacking somewhere and it isn’t here!
When Lynne arrived at our door for the first time yesterday she said: ‘I know nothing about Maureen’. Then she had to work from a temporary Care Plan : thank goodness our considerate regular Agency provides our carers during the week!
I am feeling much worse than yesterday as it becomes a struggle to stay on my feet.
Maureen may well be just the same as when she is not sleeping her confusion is rampant.
Thank goodness Lynne will be here at noon to prepare some lunch.
I have asked for a tea time call to help us get through the day.
We never thought about times like this when we ran off to the seaside together!.
Books, papers and blogs by Joanna Moncrieff
Buddhist meditation applied to our everyday lives...
My Voyage Through Early-Onset Alzheimer's
Just like the horse whisperer - but with more pages
healthcareandhumanity@gmail.com
Non-smoking, vaporizers, e-juice and more
Bringing awareness to mental illness and sexual assault
One more person's journey with Alzheimer's
"Always at your Service"
Lessons and love from Alzheimer's World
Person with Dementia Symptoms
Empower Dementia Strategies
