Dementia: Thinking Outside The Box

General

Image result for thinking outside the box pictures Maureen woke up this morning clearly thinking I was her dad.  This is not something new and I no longer find it upsetting.  The important thing is that she feels safe in my company; irrespective of who she thinks I am.

It’s Maureen’s sisters birthday today and I have flagged up the possibility of visiting her in Nottingham tomorrow.  Maureen has now warmed to the idea and I had already provisionally arranged for our man to be here in the morning to drive us south.  Having a ‘chauffeur’ opens up new possibilities for us and 2017 needs to become a time for thinking outside the box to avoid the dreaded ‘Prescribed Disengagement’ approach to dementia.  Mind Maps by George Huba outline the stark choices for someone with dementia.

Spare a thought for us this Christmas

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My final post before Christmas: George telling it as it is.

georgerook51's avatargeorge rook

I realise I haven’t been looking forward to Christmas this year.

I’ve been miserable.

Humbug, writ large.

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Cards have been arriving in the post, people I work with giving them…

A little party at one trust, carols, thanks, all that…

I ducked the second, Christmassy, half of that one.

And now I know why.

It’s time to be happy, to meet people at parties, over dinner, in the street, and be happy.

And talkative.

To tell people what you’ve been up to, how the family are, ask about theirs…

And that means remembering…names, facts, events…which takes time.

Then the words to explain those events and feelings…

It takes effort.

Moray FirthRoss and Cromarty Scotland Moray Firth Ross and Cromarty Scotland

On Saturday night this crystallised.

I can’t keep up any more. Not at all. I can’t get into conversations.

By the time I’ve thought of a word or idea they’ve all cut in, and my…

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Dementia: Carpe Diem

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Image result for carpe diem pictures

The sun shone on the brave yesterday as we seized the day and the clouds stayed away.  Maureen was in good form early doors so I hastily rearranged our trip to Coventry and by 11 am we were on the A46 heading south to see my mum.

Our chauffeur was superb and I think Maureen could be persuaded to travel in style in future.  In fact, she was really taken with life in a Volvo with its leather trim and smooth acceleration.  I wonder if it is too late for her to alert Santa to what the old man would like in his stocking?

My eldest daughter and her two girls were at my mum’s Care Home on arrival.  We quickly exchanged hugs (although in my haste I understand I missed out the youngest) and good wishes for Christmas before taking my mum  for a short drive in the country.  It wasn’t a day for the normal ice cream treat so mum had to traverse some difficult territory with her walking frame as we inched towards the cafe at Coombe Park.  Mum and Maureen were so taken with the Festive table decorations that a kind waitress responded to my scrounging attempt with some artificial flowers to remind mum of our visit.

On our return, we were in bed shortly after 8 pm both worn out from our mission.  It was a very tiring day but we went to bed delighted with what we had achieved and the opening of a door, Volvo of course, which could lead to new directions on our journey in 2017.

There could be no other contender for today’s Good Music.  I remember having a Christmas drink with Maureen when we were work colleagues listening to this song and thinking I’m really fond of this woman: over 25 years later I still am!

I’m a little late posting this morning as Maureen is resolute that it is time to go home.  I have just listened to a very convincing argument that we no longer need to stay in this Care Home.  I wonder if she has got wind of the Best Interest Meeting that will take place two weeks today to deliberate upon her future care and accommodation!

Dementia: ‘I Hate This Disease’

General

The good news that I hoped to post today is not going to happen after all.  I have decided that tomorrow’s planned trip to Coventry to see my mum is not a good idea, despite arrangements to travel in a chauffeured driven car.

Maureen had very little sleep on Monday night: waking frequently troubled by fears and hallucinations.  Her cold and sore mouth were troubling her so much yesterday that I took her to the doctor for assessment. He prescribed Bonjela and stressed the importance of drinking plenty of fluids as there were signs that she may be dehydrated. Thankfully, her blood pressure is not giving cause for concern.

It has been an early start again this morning.  Maureen has been on the go from half past three.  She started off singing: ‘Who’s Your Lady Friend’ then moved on to being ‘Moaning Minnie’ with complaints about the service in this Care Home.  This is a side of her personality that has become more prevalent as dementia has turned my compassionate wife into a sarcastic woman: a shadow of her former self.

There are some brave people out there, who are quite prepared to share their journey – my cyber friend  Normms never pulls any punches:

Dementia: Amazing Support

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Image result for Amazing Susan Macaulay PictureSincere thanks to all those people who have supported us in 2016: we wouldn’t have survived without you.  We hope you all have a good Festive Break and a Happy New Year.

I’m now going to follow the advice of Amazing Susan and limit posting to three days a week. Susan Macaulay has given us lots helpful of advice during the year and I’m going to heed her warning that I’m perhaps overloading our followers.

There is some really good news coming up on Wednesday!

Dementia: ‘Filled With Joy’

Mixed Dementia

Image result for Filled With Joy pictureMaureen was ‘filled with joy’ last night as she opened our front door and joined in with Carol Singers who were in full flow.  She sang along and conducted three young lads who gave us their rendition of ‘We Wish You A Merry Christmas’.

As the lads left a few coins better off I followed them down the path and thanked them for giving Maureen so much pleasure.  They appeared to understand how meaningful their performance had been for someone who had dementia.

‘Filled with joy’ has real resonance this morning as it is a catch phrase from one of our grandaughter’s.  What gives it real significance is that her dad will be popping in to see us this morning on his way back from a trip up North.  It will be interesting to know if his daughter ever found the dream that she lost when she woke up in our care several years ago!

I wonder what the going rate is for Carol Singers these days?  Thank goodness they were too young to claim the Living Wage!

 

Dementia: Getting Back To Sleep

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Image result for Sky Blues win the Fa Cup Picture

I have often posted my gratitude for having a father who taught me so much.  Last night on being woken for the third time I remembered his method for getting back to sleep: replaying old goals that he had seen Coventry City score.  I adapted his idea in the early hours and went through the Sky Blue team of 1987 when we won the F A Cup; remembering the players and who we signed them from.  The bonus was our Number 11 – Nick Pickering who came from Sunderland.  They won yesterday and Maureen’s sons were both there, along with our grandson, to see a vital victory as they try to retain their status in the Premier League.  It is not a good time to discuss the fortunes of the Sky Blues!

Another piece of good news: Maureen’s early Christmas present is having a positive impact as she loves twirling it on her wrist.  Her wedding ring kept slipping off her finger despite being reduced in size a couple of times so she decided a silver bangle would be preferable.  Quite amazing really as it is our Silver Anniversary this year although we haven’t been married for quite that long as I was on trial for several years. The bangle is relatively easy to find when it slips off her wrist: her engagement ring is still hiding somewhere!

Dementia: Feelings Matter Most (Sheard)

Mixed Dementia

My optimism from yesterday originated from the news that Maureen will have a Care Co-ordinator in the New Year.  Our Social Worker has played a significant role in campaigning for the missing link in Maureen’s support package:  CONTINUITY. From an initial conversation yesterday,  I’m optimistic about this development as the person responsible for resourcing a Care Co-ordinator pointed me in the direction of this man:

I had never heard of David Sheard until yesterday and I am very interested in his thoughts on Dementia Care.  Therefore, I will spend part of the Festive Period considering his thesis

From the heart: let’s end all this

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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!

minimising distress, Uncategorized

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’.