Category Archives: Uncategorized

From the heart: let’s end all this

A departure from the norm here but the plight of my beloved Sky Blues simply has to be shared.

Kevin Unitt's avatar

Coventry City might have literally broken my dad’s heart. Enough is enough. I’ll mediate between anyone. I just want the hostility to end.

Whenever my dad calls these days, the formalities of our lives lived hundreds of miles apart are covered before he’ll move on, almost in summary, to his latest feelings on the utterly desperate situation facing the football club he’s watched and loved for more than 50 years. I’ll sympathise, but in the detached way of someone who has now long-since divorced themselves from feeling over the issue, so painful was it to function by keeping it close. I admire his continued passion, and fight, for the cause but I, like thousands of others, have lost the will to carry on.

For me, it will be ten years next month since I left a job writing about my football team Coventry City. A dream journalism job I’d wanted…

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Dementia: We’re Almost There!

Image result for We're Nearly There PictureI’m optimistic that within a month there will be some good news to report from this neck of the woods.  Our difficulties have originated from the national approach to vascular dementia: there is no treatment available.  This means you are almost left to find your own way on this hazardous journey; even if your personal history adds a layer of complexity to your route.  It has taken a while but there is now recognition that being cast adrift is hardly a person-centred approach to care in Maureen’s situation.

There are lots of people working behind the scenes to put in place arrangements to provide the support that is needed as we attempt to address the ongoing impact of changes within the structure of Maureen’s brain.  This is taking place at a time of dwindling resources; when there is a  relentless demand for services.  I would like to extend my sincere thanks for the hard work that is going in so many quarters to create a level of support that will attempt to minimise Maureen’s distress and help us all give dementia ‘a run for its money’.

Dementia: Tales of the Unexpected

On Tuesday as I made my way to meet staff at our local Alzheimer’s Society I got a feeling of déjà vu as I passed a familiar bus stop.  As I stood for a moment I remembered waiting, with my heart in my mouth, to be taken to a Secondary School where I spent many a day.  I recalled those moments of panic wondering what I was letting myself in for to earn my £145 a day.  Would it be one of those days where they would be at me for all five periods or would I manage to find a peaceful haven for the odd twenty minutes?

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As I moved on towards my destination I smiled as I thought of some of the characters from my days as a  Supply Teacher and wondered what they were doing as Christmas loomed.  I also thought how fortunate I was to have been in their company and reflected on what I had learned from the almost inevitable hostilities.  Two things came to mind firstly I could never predict what would happen as soon as I entered the school premises.   In fact, I  rarely knew from one day to the next be which classes or subject I would be expected to teach.  Secondly, what a wonderful training ground Supply Teaching was for a Care Partner dealing with dementia: tales of the unexpected personified.  Unfortunately, there is one significant difference: this is a Labour of Love and there is rarely any time off!

I have managed to squeeze in a few hours of rest in the last 24 hours.  Maureen appears to be sleeping peacefully at the moment.  It was well after midnight before there was any respite from last night’s presentation -possibly driven by the full moon.  I wouldn’t even chance to predict how today will go and I will take the bus this morning to meet our social worker: ‘stealing’ Maureen’s car only fuels the fire of dementia!

Footnote: I won’t be going anywhere this morning as Maureen is begging me not to leave her.  I’m hoping YouTube will lift her spirits and  Lesana and Lea are on as I post.

Dementia: Time Travelling

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Maureen is time travelling this morning: reliving some unhappy childhood memories.   She is replaying her mother’s disappointment that her father moved the family back to Nottingham from Cleethorpes into a house that she had never seen before.  I have had an hour of ‘why are we here; why didn’t you involve me in choosing this house; why did we move from Coventry?’  It is one of those occasions when nothing I  say can shift her perspective so I have made her cups of tea and I’m now going to leave her to rant to herself.  Hopefully, she will tire shortly so we can both get some further sleep and wake up at a reasonable hour to our lives together in 2016.

There’s no peace from dementia and we are still awake three hours later listening to YouTube.  This one always calms things down:

Maureen  is now singing along with Boney M to this one:

Hope we can catch up on some sleep later!

 

 

Dementia: Bad Dreams and Hallucinations

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Maureen has had a difficult night.  Her dreams have been vivid and frightening.  She has seen and heard things in the room we have been sleeping in that have scared the living daylights out of her.  This is hardly the restful night I needed before this morning’s meeting with Senior Officers of NAViGO.  Just to add to my difficulties my new Wireless Printer has lost its connection so I will need to take my Lap Top to the meeting.

Dementia: A Lovely Memory

I clearly gave Maureen a lovely memory earlier this morning.  She was sleeping in the chair and stirred as I came into the room and said: ‘it’s GrandDad’ and gave me a kiss on the cheek.  I have often heard her speak so well of her grandparents so this case of mistaken identity didn’t worry me and reminded me of this song:

I remember a West Indian friend of mine once saying: ‘I don’t care what they call me as long as they don’t call me late for dinner’.  As Maureen’s dementia progresses I don’t worry who she thinks I am as long as she feels safe in my company.

Don’t give up

Kate has helped us so much and this post says it all.

Kate Swaffer (she/her) Kaurna Country's avatarLiving Beyond Dementia™

jonathonLike my food blog, I’ve not been here for some time… The only suggestion I can think of this week, for living beyond dementia, is to not give up! A very close friend’s son died unexpectedly, a colleagues house burned to the ground, including their pets, and the week before that, a close girlfriends husband had a major stroke.

Dementia is definitely not the worst thing that can happen to you or someone you love, which I feel is worth remembering…

When you fall over, get up. When you fall off your bike, get backup, fix the bike, patch up your wounds, and get back on your bike.

When you feel sad, cry a while, then get back to living. When you lose someone you love, or someone you love loses someone they love, cry a while or a lot, then get back to living.

If you get dementia or someone…

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Dementia: Unbelievable

Image result for I dont believe it pictureI will be contacting the Chief Executive’s Office of NAViGO this morning to request that her staff do not darken our door until after our scheduled meeting on Monday.

Two Support Workers arrived, unannounced, at our house  yesterday evening to conduct the MMSE Memory Test on Maureen.  Fortunately, she was asleep and common sense prevailed.  Perhaps I should have told them that she had already graduated to the ACE 111 Memory Test last year  when the Memory Service determined that further testing was pointless because of their diagnosis of ‘dementia: predominantly vascular’.

A Specialist Doctor told me in July that Maureen’s condition is now classed as moderate to severe dementia.  There is a distinct risk that further testing will unsettle her as she will see it as  another step on the road to locking her up in a Care Home and throwing away the key.  I hope common sense prevails this morning: this is far from person-centred care!

The  approach to dementia has major shortcomings which we have to endure day after day:

  • The services for dementia are rooted in mental health.
  •  The experiences of those who care for Maureen on a daily basis are consistently overlooked or ignored.
  • Professional staff consider what is happening here from the wrong perspective: dementia is not caused by an affective disorder of the mind it arises from a damaged or dying brain.

The professional approach to what is going on here will continue to be UNBELIEVABLE while the current setup remains.

Maureen has woken this morning wondering why we are in a foreign country.  This was a familiar question in the days following stroke at the beginning of 2014.  I will seek an appointment with her GP this morning to discuss her presentation.  She is fortunate that there is someone who knows her well, treats her with respect, and will listen to what she has to say with an open mind.

Symptom Progression and Strategies 2016 December

A very interesting post by Tru.

Truthful Kindness's avatarTruthful Loving Kindness

Tru here.    (Sorry; it is not a glitch; my brain is just not working well enough to come up with a graphic.)  I realize it has been a month since I have last written a blog.  There is a good reason these have been less frequent;  Doctor and I just call them “events”, but current theory is that I am having tiny strokes.  This is supported by my MRI, and part of my current diagnosis is “mild to moderate cerebrovascular disease”.

First event was probably mid-February 1999 (year before they first pulled my driver’s license and awarded me permanent physical and cognitive disability).  Most recent was about 10 days ago.
Frequency has slowly progressed from every few years, to every year, to every few months … then every month, and now three events in six weeks (every two weeks).  Consistently, after each event I experience almost a week of dramatic fatigue and…

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Feedback… for better or worse

Kate Swaffer who lives by my dear dad’s mantra: ‘tell the truth and shame the DEVIL’.

Kate Swaffer (she/her) Kaurna Country's avatar

screen-shot-2016-11-30-at-6-51-52-pmWhen I am conscious, I strive to be a nice person, but, I also always strive to tell the truth, and to provide (positive and sometimes negative) feedback on things done well, or comments on things  I may feel or think could or should be done differently. That does not mean I am right, merely that I have an opinion, which is 100% something everyone is entitled to.

I’m also reasonably upfront when I feel hurt or offended – the point being, that it is my feelings I share, and not who is right or wrong. Of course, being up front with feedback or feelings can get me (or you) into trouble!

Occasionally, some friends have said after providing me with (negative or positive) feedback, ‘Apologies for the lecture!’ I responded to one recent piece of feedback and apology for the ‘lecture’ like this;

I like them! It is unfortunate so few can take any form of criticism from others…

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