Tag Archives: Being Flexible

Dementia: Feel The Fear And Do It Anyway?

Mixed Dementia, ,

Image result for Feel The Fear and do it Anyway PictureAs ‘Girl Monday’ was off sick yesterday I tried something a little different. We needed some basics so Maureen came with me to Aldi where she seemed ill at ease, despite almost skipping around on our last visit.  When we were putting our purchases in the car she said ‘she felt useless; as she was no longer capable of shopping alone’.  She recalled earlier days where she filled up the shopping trolley alongside adding up the cost as she traversed the aisles in supermarkets.

We chatted as we made the homeward journey and I decided on some action as we neared our fishmongers.  I stood outside his shop with tears in my eyes watching Maureen chatting confidently to the owner as she took advantage of today’s Special Offer: ‘Three pounds of haddock for £10’.

During the afternoon Maureen couldn’t settle and frequently came to find me if I was out of sight.  Her shadowing became intense as the evening approached and she often sought a hug telling me how frightened she had become.  We retired at 8 pm as we were both exhausted and during the night she found me after I had moved to the spare room.  She shared her fears that ‘some people had invaded the house and were cutting up clothes’.  At that juncture, she followed me into the bathroom and closed the door behind her at a time I would normally enjoy some privacy.

I shared my concerns about Maureen’s current presentation with certain professional staff yesterday and adjusted some plans accordingly.  Our social worker was on leave and will be aware of my need to speak to him this morning.  Maureen struggled last week with Wednesday’s overnight sit and we will need to review our plans on that front in light of the fear factor.  This may not be one of the occasions to take a leaf out of the advice in the above book but the author may not have been taking dementia into the equation.

I have broken off completing this post to make Maureen a cup of tea.  She has ended up contesting the restrictions on her right to roam.  I accept she has a point and I disagree with the doomsayers that she is not safe when she is out by herself.  This is something I need to explore with others urgently.  Why keep Maureen under lock and key and be seen as the Bad Guy if this is not really necessary?

Footnote: 10.15 am I have just sent Girl Tuesday home she has a dreadful cold and we can’t risk either of us catching her infection.  How on earth carers are being sent out to work with vulnerable clients in that condition defies belief!

Dementia: No Room At The Inn

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We had a stroke of luck on Friday morning when there was no room at the Inn.  A nearby Care Home determined that they would be unable to take Maureen for Day Care or Respite as they felt they were unable to meet her needs.  ‘Houdini’ (AKA Maureen) had already escaped from them once and also found her way into an unsupervised area of the building on another occasion. The Care Home concerned already had three escapologists in permanent care and they decided that taking another one would stretch them beyond safe limits.

The Inn being full turned out to be a blessing in disguise as Girl Friday Night played a blinder and opened up a new range of possibilities for care in the home.  The restful night that followed led to a lovely day where Maureen could only be described as AMAZING:  I hope my cyber friend Susan Macaulay won’t mind me borrowing her nickname!

Our first call in the morning was  Freeman Street Market where Maureen played a significant part in our choice of provisions.

When we moved on to Aldi she looked around for things that we really needed to compliment meals for the forthcoming week.

Later in the morning, she reminded me that we had forgotten to replace her toothbrush so we visited our local pharmacy to make the necessary purchase.

Throughout the morning we experienced Caring Cleethorpes at its best:

  • Stall holders at the Market know Maureen and go more than the extra mile to support her.
  • Staff in Aldi soon warmed to someone who takes a little longer at the till than most customers.
  • Our friends at Lloyds Pharmacy were exceptional as always.
  • Then the icing on the cake when  Girl Saturday arrived and picked up on Maureen’s high spirits to play her part in a lovely morning.

How fortunate that there was no room at the Inn and Maureen escaped ‘being put on a train again’ as she described her last visit to the Care Home concerned.  The Inn also let me off the hook as I had promised Maureen that we stand together in this: no more single tickets for our journey!

 

 

Dementia: Protecting Our Best Interest

Mixed Dementia,

Image result for Best Interest Decision Picture

Our phone line was hot yesterday and there was heavy traffic elsewhere.  On occasions, I resorted to a combative style that is a default from years of trade union and political activity.  Sometimes I think pressure and conflict bring out the best in me.  However, in all of this, the consistent advice was to protect our Best Interest.

‘At the end of the day’ as is often said in this neck of the woods, there was light at the end of the tunnel.  I believe there is a way forward to ensure Maureen receives 24/7 care with me by her side.  Discussions are at a very preliminary stage but I’m optimistic that a radical solution is around the corner.

Music was the medicine that kept us both going throughout a rather busy day.  The resident D J played some golden oldies for a couple of hours and his Singer Lady was in great voice. We played ‘Spot That Tune’ for a while.  We also made up lots of other musical games.  John Travolta and Fred Astaire took in turns to take to the floor sometimes dancing alone, others with Ginger and Olivia at his side.

Image result for Susan Macaulay picture

Susan Macaulay, above on the left, has suggested that we should record events here so that they can be shared on my blog and elsewhere.  This is something we need to explore when the time is right and we have protected our Best Interest.

Chloe is back today and Maureen is really looking forward to seeing her.  Gail has played a blinder in the last couple of days.  If ever I wanted to set up an Agency training care staff these two excellent women from Hica Care Agency would be part of my team.

I continue to count my blessing that we moved to Cleethorpes.  Like all local authorities, North East Lincs continues to be hampered by Austerity Measures.   However, I never doubt the integrity of professional staff as they do their best to paper over the cracks.  Unfortunately, we are already at the sharp end of the crisis in Social Care: a largely unregulated service that is underfunded.  It’s no consolation to know that we didn’t vote for Osborne and his mates from Eton and never would!

Footnote: A rather special song is on my Good Music page today.

Dementia: A Taste Of Honey

General

Yesterday was a good day. Knowing that Maureen  was in safe hands I was able to spend time with my own family.  I had a lovely time with my mum, brother and daughter along with her delightful children.

I return to Cleethorpes this morning refreshed and optimistic about the future.  Maureen now needs 24 hour care, something that cannot be sustained within our home. Yesterday I made telephone contact with some  of the professional staff who support us on our journey to suggest a possible way forward.

A Blog is not the place to show your hand when discussions are ongoing.  However, I’m confident that arrangements can be made that protect the Best Interest of a very happily married couple.

Dementia: A Sentence Of Hope

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As I looked at my Inbox at the end of a very harrowing day there is was a sentence of hope:

Hello,

Would you be able to come to Lindsey Hall on Friday 30th for around 11 to complete the assessment?

Claire

This message from the Dementia Manager at Lindsey Hall Nursing Home helped me to put my day into perspective and remove the bad smell still in my nostrils.  I had become despondent following brief tours of three options for immediate Respite.  They all had that distinct smell, and look, of prescribed disengagement.  I had returned home at the end of my stint reminding myself never to put Maureen into such places.

I have had a reasonable amount of rest in the last 12 hours.  There is a small spring in my step this morning because of light at the end of a very dark tunnel.  In the next few weeks I have to become ‘Patient Paul’ and work with Claire to ensure that Maureen enjoys a smooth transition to becoming  a resident at Lindsey Hall Nursing Home.  How fortunate we are that such a resource is on our doorstep!

 

Dementia: Five Days To Go

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Another troubled night has left me pretty worn out at a time I really need to be on my toes. With 5 days to go there is lots to be done in preparation for our move.  This isn’t quite the last throw of the dice but it is certainly an opportunity too good to miss.

I want our transition to Lindsey Hall Nursing Home to be as distress free as possible for Maureen.  Therefore the thought of ‘Fail to Plan: Plan to Fail’ is staring at me every time I look in the mirror.  Tomorrow I hope to circulate a Discussion Document as ‘Many Hands Make Light Work’.  Please feel free to comment on my thinking.

Once again I am grateful to Bill Malley one of my Line Manager’s when I worked for Coventry City Council.  His considered approach to managing staff was a refreshing change to the general approach within the Community Education Department.  Bill often circulated Discussion Documents to help determine Working Positions.

 

Dementia: Endless Sleep

General

Trying to find  Maureen started yesterday, has continued through the night, and into this morning.  When I took the call from Royal Court yesterday I had to track her down in Cleethorpes.  During the night she has moved from her downstairs bed up to the marital bedroom and back down again.  The real positive from yesterday is that she now has a focus on us both getting plenty of sleep – which we did last night. I serenaded her with my version of this number a while ago to help make the point:

I have now spun the events of yesterday in a positive manner by going along with Maureen’s reality.  I’m pleased to say she is not against us both going back to that ‘nice place’ today.  I’m not at all surprised by her reaction as Royal Court is all that I anticipated it would be.  I know there is still mileage in my instinct that Royal Court could yet become an important part of our support package with its compassion approach to residents.

We will explore the potential for Lindsey Hall Nursing Home this morning.  I’m meeting the Dementia Manager at 10.30, along with our social worker, and am excited at seeing this state of the art approach to Residential Care.  The building has been converted from surplus accommodation of the secondary school that did me an incredible favour. Lindsey School was the nail in my coffin in my career as a Supply Teacher.  When I was escorted off the premises for having ‘issues with the school’ I resolved to call time on earning money in the cauldron of supply teaching – a decision I have never regretted.  How ironic that Lynsey could play a further significant part in our lives.

Footnote: I’ve just remembered Maureen and I saw Marty sing this song at Grimsby Auditorium a few years ago when we attended a Sixties Night – those were the days!

Dementia: A Positive Start To The Day

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Maureen has been inspiring this morning with her enthusiasm for improving our lives.   She had a smile on her face as soon as she opened her eyes,  keen to appreciate how pleasing the lounge/bedroom is on the eye.  Her nurturing nature came to the fore as she redesigned our layout to make sure that my sleeping quarters become free from draughts.

It has been lovely to see Maureen in such a creative mode this morning after a difficult day yesterday.  Her cold, along with a sore mouth and tongue, were clearly taking their toll as she spent large parts of the day on the sofa.  She did manage to come round for a while in the afternoon and I heard lots of laughter as she chatted to Dianne our carer as I prepared Sunday Lunch.

I managed to change my status in the evening with a selection of remedies for her soreness.  It’s amazing what choc ice and selective sandwiches can do for your reputation when you are seeking status as a naturopath, rather than a waste of space.   I then added to my prowess when I created an enjoyable hour or so with lots of our favourite numbers on YouTube: Maureen labelled it ‘Music While You Work’.

Pressing for a late night collection of bread in Cleethorpes may have been pushing my luck a little too far.  Maureen didn’t seem particularly comfortable as we took  in the night-life around the Market Square:  although we both enjoyed reminiscing over our ‘misspent youth’ in Amusement Arcades, looking at the latest ways of extracting money from the punters.

The holidays are over for our Care Team today and we are back to normal – what a risky thought with dementia having an influence on events!.  Chloe will be here at ten to honour Maureen’s hairdressing appointment.  It will be interesting to see if we can multi-task this morning and carry out Maureen’s ideas to revamp the lounge/bedroom.

Dementia: Landing At 4am

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Image result for Lancaster Landing Picture

Maureen and I met on the landing at 4 am this morning embarking on two different missions: mine to make the bathroom; hers to get up.  We had landed in different quarters last night as she wanted the marital bed to herself.  This followed an elongated getting ready for bed session with lots of distress and confusion.

We had a reasonable day yesterday with a fair amount of activity interspersed with a couple of siestas.  I’m beginning to wonder if resting is due to tiredness or boredom on Maureen’s behalf.  There’s an interesting post by The Unforgettable Team that may help me to shed some light on this issue.

This is the second day running we have cancelled the Carer Sit.  In some way it is our Bank Holiday from Strangers being in our home as Chloe and Gail, two of our regulars, are on leave.  This doesn’t mean I’m confined to quarters as Maureen likes to have the house to herself while I pop next door for a chat or go for a walk around the block.  It was lovely to be greeted by a warm smile yesterday as Maureen waited for my return as she stood at the back door.  I always use a couple of whiteboards to remind her where I have gone when I pop out and suggests she takes a key with her if she decides to go out by herself: preserving a semblance of Maureen’s independence is vital at this stage of our journey.

I need to restrain my temptation to encourage Maureen to join me in a trip to see relatives.  She clearly doesn’t want to make a long journey away from here – every time the phone rings she is anxious to remind me that we are not planning to go anywhere: I also get the impression that she would be reluctant to receive visitors.

As we often say we are planning an ‘Easy Day’ today with a couple of walks like yesterday. Pottering in the garden also beckons as there is always something we can find to do to pass the odd half -hour in the fresh air.

The beauty of being retired is that we know we don’t have to go to work tomorrow: although I’m sure Maureen will ask me what time I have to be on duty in the morning!

Footnote:  I couldn’t resist the Lancaster as I never miss the opportunity to pay a tribute to my dear old dad who was a Tail End Charlie flying on over 30 missions.  When you consider the casualty rate of Bomber Command we were very fortunate children indeed!

Edit:  At 8 am all sorts of things are wrong and Maureen doesn’t even want another cup of tea so she is ‘staying in bed’: hope she sleeps it off!