Category Archives: General

Dementia: ‘Baby Come Back’

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Continuing with my musical theme today I’ve just remembered going to see Pato Banton with Maureen. We went because rumour had it that members of UB40 would join him on stage.  They didn’t but when I think of one of his hits, well you couldn’t make it up: Baby Come Back.  As I have mentioned before one of the wonders of YouTube is you can always catch up on shows you didn’t make, as I have done with the picture below  This time Pato is together with Ali Campbell the real voice of UB 40:

If only it were so simple to do something about dementia.

Dementia: I’m Missing You

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Another early post with Maureen awake at 3 am, needing a drink.  

There is a recent novel: Elizabeth is Missing where the main character has dementia.  The story is about her efforts to  find her friend Elizabeth. Three people in my own family have dementia: Maureen, mum and my brother John are now missing.  Jimbo a frequent contributor to Talking Point, cleverly changed the words of a poem, Antigonish, by W H Mearns to expresses the associated agony like this:

Agony.
Yesterday upon the stair,
I saw my wife tho’ she wasn’t there.
She wasn’t there again today,
I wish she hadn’t gone away…

When I came home last night at three,
My wife was waiting there for me
But when I looked around the hall,
I couldn’t see her there at all!!

Last night I saw upon the stair,
My poor dear wife who wasn’t there,
She won’t be there again today
How I wish she’d not gone away…

Just to extend the my artistic licence this morning I am going to add a special piece of music to this Blog.  The choice is pertinent as it is UB 40 singing: I’m Missing You.  There’s no prizes for guessing the Band on the stage at the first concert Maureen and I ever went to together, at the NEC, in Birmingham.

The poem, and song, couldn’t express my feelings any better.

Dementia: Admiral Nurses Should Be Available Throughout UK

General,

There are lots of things that don’t add up as we travel on our journey with dementia.  I am focusing on Admiral Nurses today; following bidding farewell to Heather this morning.  Although Mel her replacement will be looking after me before Heather jets off to New Zealand, I can’t help wondering why Admiral Nurses are not available throughout the UK.   Anyone who has dementia within their family faces a steep learning curve.  It is ridculous that there is a post code lottery  determining the availability of  Admiral Nurses to help you on your way.

As regular readers of this Blog will recall; my mum, and brother also have dementia.  When I think of the mistakes I made with my initial reactions to their behaviour, I shudder with embarrassment.  We were all taken aback by John’s behaviour when my dad died.  None of us could fathom his inability to grasp simple detail: we had no idea that his short term memory was failing.  How on earth could we be expected to know what was behind his gaffs and out of character behaviour?  We had no idea what was wrong or how to deal with someone who might have dementia.

I committed a cardinal sin, or two, in the early days of mum’s decline.  She told me she must have had an argument with dad as he hadn’t been to see her in her Care Home.  Like a fool I reminded her he was dead.  Being a thoughtful son I also took her to see John shortly after he had been incarcerated in his Nursing Home .  Not up to speed with dementia I did her more harm than good: she gathered he didn’t recognise her.

There is a steep enough learning curve for any of us on this journey.   Without guides we can only stumble along the road and damage others in the process.

Dementia: Farewell Admiral Nurse

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Today is a very sad day for me.  It is the last time I will see Heather, my Admiral Nurse.  She will  be emigrating to New Zealand in the next couple of weeks.

I could write volumes about the exceptional support she has given me in the last eighteen months. Surrounded by those who in my view offer services that are not fit for purpose; she stands out like a beacon of good practise.

Whenever I have contacted Heather she has always asked one simple question: ‘What can I do to help?’  It was reassuring to know I could always rely upon Heather.  She always did what she had agreed to do. Such a rarity on our a journey with dementia; where the only sensible way as I pointed out yesterday appears to be self help i.e. DIY.

Heather I know you may reach for the sick bucket on reading this.  That is the sort of person you are: professionalism personified.  I will really miss your support at this challenging time in our lives.

What a shame that so many others lack your knowledge of dementia, and compassion.

Good luck girl, you deserve it, and sincere thanks.

Dementia: ‘The Best Laid Plans’

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It had to abandon all my good intentions about how to spend the todayday: Action Man frustrated once again.  Maureen was quite adamant how she wanted to spend the day: packing to go home.  During the morning she emptied wardrobes, and drawers, in preparation for the homeward treck.  She pursued her goal with some rigour, with piles of her belongings all over the house.

I tried my usual distraction techniques to no avail.  Not even my best impressions of the ‘Fab Four’, along with their music on the CD Player changed things for long.  Even a smooch to ‘Yesterday’ in the kitchen made little impact on her focus.  Although she did comment I was becoming a little forward in my movements.  As a last ditch effort I managed to persuade her to join me for a catch up rest in bed late afternoon.

As I have said before ‘home’ is that place in the past where dementia did not have an impact on Maureen’s life.  A place where she reacalls being an idependent woman; not saddled with memory loss and its attendant difficulties.  Who can blame her for packing?  What a shame the map is sadly unavailable.

Apologies for this being the third blog of the day.  Tomorrow there will only be one blog about my Admiral Nurse  Heather is currently packing her bags before emigrating to New Zealand.  She deserves a special focus in my blog: as she has shone as a beacon of good practise.

Dementia: ‘What’s The Plan Action Man?’

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Maureen has often posed the above question to me in the timewe have been together.  It’s her catch phrase for checking what fancy doing on any particular day.  She is one of the most  amenable people I have ever met, and generally goes along with my suggestions about how we should spend our day.

Action Man now has to consider how Action Woman is on the day.   She has never been one for getting up in the morning and jetting off on a late availability holiday.  Maureen likes to plan ahead, and work to lists so, nothing is forgotten when you arrive in the sun.  So if a holiday is booked planning and packing are done well in advance.

It’s a lovely sunny day here in Cleethorpes, so it looks unlikely that the weather will restrict our options.  It is more likely that energy levels will have to be taken into account, after our early morning start to the day. Staying local may be the best option; with a walk on the prom and the beach.  As Autumn arrives we need to make the best of what might be an Indian Summer, because it may not last long.

As always I will fly a couple of kites: two stand at the ready in the garage if the wind gets up. Metaphorically speaking; I will also continue to put another couple of ideas into the sea breeze. Swimming, and ballroom dancing, seem worth trying to get off the ground – so best float them up there.  I’ll keep you posted on progress…….

Dementia: The Only Way Is DIY

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Maureen woke at half past three this morning wondering if staff were on duty in this Care Home before dawn .  She wanted a cup of tea, because her mouth felt dry, and  was very pleased when I told her I would help as I knew where  things were.  I couldn’t leave her to her own devices anyway, as she often tries to boil the kettle without the lid on.  When we got out of bed she expressed concern that we might get into trouble for waking the other residents up. Then she said it didn’t matter as we were being kept here because: ‘they thought we were mad.’

It’s not surprisng Maureen is awake at this time of the morning; she went to bed very early last night.  It is possible that I woke her early this morning after visiting the bathroom.  She is now back in bed, with tea, and will have little difficulty going back to sleep. Unfortunately, once I am awake It is difficult to ‘switch off’ with my thoughts on ‘what next?’

I gave an early morning airing to the possibility of swimming during the next few days.  The initial response has not been positive, with concerns about the water in the pool being cold.  It could be I played my card too early.  I will return to this theme later and keep pushing out the boat until it is floating on the water.

My other predominant thought is getting to see my own family.  Scarlett a regular contributor to Talking Point asserts that DIY is the only way of making such things happen.  She shares her experiences as follows:

During my 12 year “journey” with John, along the Alzheimer’s path I learned

(a) Nobody phones you back when they say they will

(b) Appointments are cancelled at a moment’s notice, and rescheduled

(c) Then they’re cancelled again

(d) Social Workerss, et al, are constantly on annual leave, on a course, sick or at a meeting

(e) Don’t assume that once you’ve explained everything in great detail, and “someone” has been sitting in your home, writing notes – that’s it. Because …

(f) Every new person you encounter wants to carry out their own assessment

(g) Being stoic, and not bothering anyone, gets you nowhere

In the relatively short time that I have been a Care Partner my  experiences mirror Scarlett’s, and many others, from what I have read on Talking Point.  I simply have to grasp the nettle, and develop my DIY skills, if our journey with dementia is to progress in the right direction.

The only way I am going to be able to see my own family is to arrange the care that is needed for Maureen myself. That way I will not be depending on others; who may have other priorities.  The time has arrived to build a positive relationship with staff at the new Care Agency.

Dementia: Remember Me

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I often say to Maureen whenever you need something just call my name.: yell out ‘Paul’ at the top of your voice.   This song by Christie Hennessy puts my sentiments into context far better than ever I could:

 Remember Me

Dementia: Keep Calm and Stay Focused

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It is very important that I keep calm and stay focused in the coming week. I am hoping that I will be able to make progress on most of  the following:

  • Lasting Power of Attorney
  • Presenting concerns to the local Clinical Commissioning Group
  • Developing a positive relationship with new Care Agency
  • Carers’ Assessment
  • Additional carers sits
  • Planning substantial respite
  • Additional activities to provide cognitive stimulation for Maureen
  • Going swimming together
  • Arrangementys to keep Maureen safe

When I look back at the list it seems as if I am in for a busy week.  Nothing unusual there, as a Care Partner I am always on duty 24/7 with never a dull moment.  It’s certainly makes for an interesting life: that old Chinese Curse personified.

Dementia: Wonder Woman

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There are times when I would happily label Maureen: ‘Wonder Woman’.  He ability to continue to thrive on adversity is refreshing.  When I see her in action it is easy to forget: stroke led to a 50% loss of peripheral vision, and a diaFeatured imagegnosis of dementia.

Only this morning I was wondering what to try next on our journey with dementia.  On most days I try to introduce something that helps to rebuild confidence and provides a break from the kitchen sink.  I think it is possible Maureen gave me a sign this morning.  As you will see from the photo opposite she has hung up her swimming costume in her wardrobe.  Only this morning she has moved her costume from an adjoining chest of drawers.  I would speculate that this move has not been made by chance.

Cleethorpes Leisure Centre has recently been refurbished.  We have popped in a couple of times since Maureen’s stroke, but I don’t think she has had a dip in the pool for quite some time. The refurbishment means we can change in a family room and walk into the water holding hands.  The children are back at school now and the pool will be virtually empty at certain times of the day.

I can anticipate the sheer joy on Maureen’s face when she is back in the pool again.  I bet she can still swim faster than me!