Tag Archives: Being Flexible

Dementia: Choosing Your Guru

Mixed Dementia,

Last week I cancelled the carer sit on Thursday so that Girl Friday would be here for six hours the following day.  With extra time on my hands, I had to decide between lunch with my Buddhist friends in Pocklington or the company of Girl Friday – my Guru for caring for Maureen.  My choice was made easier by the fact that Girl Friday is only with us for another couple of weeks as she is about to go on Maternity Leave

Girl Friday has been my Guru on how to care for Maureen for over three years and I need to spend as much time as I can with her before she moves onto motherhood. Neither of us was surprised that Maureen’s dementia is now regarded as severe but we were both taken aback by the prescription of trazodone.   We both know that desertion by her family, and living on a Buiding Site are really getting to Maureen at this moment in time.  Medication that has the capacity to sedate her will not increase family contact or speed up the building of our Sun Room.  Girl Friday and I know Maureen needs compassion and empathy rather than medication.

I didn’t regret my decision to stay in Cleethorpes on Friday because YouTube meant that one of my Buddhist Guru’s was still close at hand.  The following video clip on suffering is particularly helpful to anyone who is dealing with dementia:

I managed to catch up with another one of my Guru’s yesterday; a Support Worker from the Alzheimer’s Society.   I knew she was running a Memory Cafe at a local Day Centre and decided to pop in to thank her personally for her support.  For administrative reasons, I have been told that I am no longer able to receive support from this individual.

A new Pathway for Carers means that I’m no longer allowed to have a foot in both camps – I can either use Admiral Nursing for support or the Alzheimer’s Society.  How ridiculous that as Maureen’s dementia progresses, support that I have found extremely helpful has been withdrawn.  This is a battle I could do with winning but I have to focus on more immediate struggles at the moment – the prescription of trazodone.  In my view,  that is the first step on a very dangerous ladder for Maureen.  I have seen how medication prescribed to deal with my brother’s aggression has left him incontinent and just about able to manage a smile.

I have no intention of persuading Maureen to take medication that she doesn’t need and has the potential to harm her.   The suggestion that I should give her trazodone covertly is abhorrent.  Maureen is an intelligent woman and if she discovers I’m deceiving her in any way our loving relationship would be brought promptly to an end. Hell has no fury like Maureen being deceived: particularly when she had that experience in her first marriage!

Footnote: I have decided to engage directly with another one of my Guru’s this morning:  Peter Kinderman Professor of Clinical Psychology at Liverpool University.  He leads this Future Learn Course: ‘Psychology and Mental Health: Beyond Nature and Nurture’ and I have signed up for it a short while ago.

 

 

Dementia: The PC Protocol

Mixed Dementia,

Image result for Protocol for Dementia Picture

With my initials what else would I call my approach to being Maureen’s Care Partner than The PC Protocol?  Over the next few days, I aim to clarify my Protocol and outline its effectiveness in maintaining or even reversing cognitive decline.  I fully accept that my evidence will be anecdotal and totally subjective.  My methodology will be to relate daily events.  My approach will lean heavily on Eric Berne’s Theory of Transactional Analysis: if something doesn’t work try something else.

Several events over the weekend have convinced me that I’m onto something.  On occasions, Maureen has astounded me by her approach to situations and her ability to recall.  It hasn’t all been plain sailing and there have been times when she has been distressed and I have been tearing my hair out.  For example, attempting to assist her when she was wearing four pairs of pants and becoming very uncomfortable – it took 24 hours before she would let me get them off (x3 ).  I accept I’m being selective in the events I have chosen to relate over the last 48 hours but here goes:

On Saturday morning Maureen’s performance in Freeman Street Market was heartening.  I confused her to start with as I foolishly parked at the front of the market which meant that our entrance was not our normal way in.  Once at our favourite stall she was a revelation as she selected our fruit and vegetables.  She noticed that new staff were on duty and was relieved when the owner turned up and made a fuss of her.  In the afternoon she was keen to have a choc ice and I used her desire to encourage a walk to our local Spa Store, even though we had a box in the fridge.

I deliberately took her on a familiar walk to the Spa Store and reminded her of focal points on our route.  She remembered some of the familiar sights and remarked on how well locals were keeping their gardens.  Once in Store, she bantered with staff who were stacking shelves or on the tills.

During the evening I had a fascinating time listening to Maureen on the Baby Monitor as she comforted a young boy in our lounge.  She was trying to make him some shoes as he was poorly shod.  I heard her efforts to comfort him as she encouraged him to sleep.    Almost half an hour I found that she had dropped off on the sofa where she slept for the remainder of the night.

On Sunday morning we had our own version of Singing For the Brain.  Maureen was in great voice as she sang along with her granddaughter on YouTube, applauding us all after every number.   She was very pleased to greet one of our gardeners when her arrived to paint our newly constructed fence.  Once he began painting I reminded Maureen of her wisdom in encouraging me to stick with Oak Brown, rather than going for the trendy colours that are all the rage at the moment.

At several times in the day, she related her anxieties about the young boy who had no shoes.  I reassured her that his mother was pleased with her intervention the previous day and had the matter in hand.  This issue may well be related to her past when a dentist scalded her for bringing her son to his surgery with cardboard to cover the holes in the sole of his shoes.

Maureen has slept well for the last three nights, my sleep pattern has also improved. This may well be because our afternoon siestas are now a fixed feast and paying dividends.  I also cancelled carer sits over the weekend because they were with unknown quantities.

I cancelled carer sits over the weekend because they were with unknown quantities.  Maureen has really appreciated two days when we have reclaimed our own home from ‘The Girls’ daily invasion into our lives.

During the weekend I have lavished Maureen with praise and TLC; never wasting an opportunity to play music or burst into an appropriate song.  This one from Ali gives you a flavour of things:

The P C Protocol is not written in stone it is an organic approach to being a Care Partner.  I have never liked the idea of ‘going with the flow’ as that is something I associate with dead fish.  I have also made my feelings on Kate Swaffer’s ‘Prescribed Disengagement’ clear from Day One.

The icing on the cake yesterday was Maureen’s words as she stumbled into bed beside me late last night.  She said she ‘wanted to wash under her arms’ and then added she could probably ‘do with a shower but was frightened of falling in the cubicle’.  Then she amazed me once again; remembering that we were short of toilet soap and that she had forgotten to clean her teeth!

Dementia: Dealing With The Care Crisis

Mixed Dementia,

 

Image result for crisis in social care picture

Yesterday Susan Macaulay asked a very pertinent question:

‘AmazingSusan says:
August 8, 2017 at 2:44 am (Edit)

Renovations are stressful for anyone – living with dementia or not. I’m wondering what the purpose of this reno is…? Not that it seems it can be stopped now, in mid stream 😦’

I’m sure this is a question that is on the tip of the tongue of many of my followers.  There are two simple reasons for the renovations that are taking place:

  1. To protect Maureen’s Best Interests.
  2. To attempt to address the crisis in Social Care.

Some time ago a decision was made that it was in Maureen’s Best Interest for her to remain at home.  Therefore, I decided our house needed renovation to ensure it was adequate for all future eventualities.

The local crisis in Social Care grows as the year progresses.  Our Main Care Agency had a 48% turn around in staff last year.  They are forever short of staff and making unreasonable demands on carers:  one of our ‘Girls’ is six months pregnant and it is not unusual for her to work an 11-hour shift without a break with no time for travel between calls.  This Agency recruited 8 additional staff a couple weeks ago and 7 of them have now left.

Within Residential Care, it is the same story: a shortage of staff and high turnover of personnel.  Last week I enquired how things were at a Care Home where Maureen had stayed in the past and was told by an ex-member of staff ‘they have all left’.  A familiar tale of staff following their Managers who attempt to move on to better things at neighbouring homes.

Having a Sun Room along with a self-contained shower room will give all sorts of options for the future.  It will make it easier for family members or live in carers to stay and provide the support. that both of us are likely to need in the future.

‘Rain stopped play’ on the Building Site yesterday and gave us both a much-needed break from the stress of renovations.  If the weather forecast is right our Sun Room will really take shape in the next week as the shell of the building will be completed and watertight.  Although yesterday’s deluge would have tested any building!

Thank you for raising questions about the renovations Susan and I hope I am covering as many bases as possible as the crisis in Social Care progresses by the day.  I’m sure if I have overlooked anything kind readers of this Blog will let me know!

Maureen is in good form this morning waving, singing and clapping after every tune on YouTube.  It’s still pouring down so I just had to play this one:

Hey, Kate Swaffer I know you are a big fan of Willie but do you know who is playing the piano on this number?

Dementia: Facing Reality

Mixed Dementia, ,

Image result for Facing Reality Picture

I felt tired and completely overwhelmed by our situation yesterday.  Throughout the day I struggled to cope with my environment.  Maureen’s presentation fluctuated at such a rate that at one stage I doubted who I was and where I lived.  Our builders, along with two joiners, were making such a racket that any thoughts of a siesta were out of the question.  The shell of our Day Room was being used as a dumping ground and resembled a bomb site.  Towards the end of the day, I began to wonder whether I had got carried away with the ideas about a Day Room and was failing to face the reality of life as a Care Partner.

Maureen woke very early this morning and I tried a bit of Barney to cajole her into the marital bed:

This was a person-centred approach as Maureen loves a lot of Barney and will always join in with the chorus.  Once again she was ‘having none of it’ as they say and went on to berate me for ‘never being at home or often in the bed of others’.  It didn’t take me long to understand that she was confusing my behaviour with ‘her previous’.  However, shifting tack again did the trick and led to a really positive outcome.

I decided to give Maureen space before turning on Mr Nice Guy by telling her about my faltering attempts to return to drawing.  After describing my struggles with the pencil yesterday I told her that I wanted to attempt to sketch her while she was sleeping.  She then asked me what I wanted to do today and I suggested going for a walk on the beach and collecting shells.  We made this a date and collection will begin later – weather permitting.  If our mission is successful we plan to paint the shells and add to the collection that we already have from the efforts of our grandchildren.

The reality of this morning is that Maureen may well forget about our planned walk on the beach.  What I have to face is that I can’t go on like this: no-one could or should be expected to.  The demands being placed on me are unsustainable.  This became obvious when I met our Key Worker last week.  He was uncomfortable with my plans to engage a carer for a 48-hour stint so I could have a break.   Any reader of this blog will be aware of the exhausting sagas that have followed previous ‘Respite Breaks’.

I have not been able to sleep, and have been ruminating over our situation, since my early morning awakening.   A ‘Respite Break’ is far from the solution, in fact, we have been worse off after a period of separation.

The ‘shell seekers’ have to come up with their own solutions to the challenges we now face.  Some of my initial thinking has been along the following lines:

  • Using carer sits to reduce my involvement in domestic tasks and cooking.
  • Exploring the possibilities of short breaks together.
  • Exploring new activities together and with others.
  • Seeking advice on how to make our home more dementia friendly.
  • Reviewing the outline plans for our Sun Room.

There is no doubt that the level of support we receive in our neck of the woods is exceptional.  The attempts to support carers and their partners in a person-centred way are genuine.  However, the reality is that I’m tired and ‘Respite Breaks’ have not worked: so we have to try something different!

Footnote:  Just as I am about to post Maureen is campaigning to be taken home.  She doesn’t want to stay in here any longer as she is now fully recovered.  I doubt we will make the beach this morning but the aspirations of the ‘shell seekers’ remain viable!

 

Dementia: Compassionate Carers

Mixed Dementia, ,

Image result for compassionate Carers picture

I am frequently overwhelmed by the dedication and compassion of Maureen’s carers. When I called into Alderlea Care Home yesterday several members of staff asked me how she was doing.  People I had never met before were genuinely interested in her welfare.  It was reassuring to hear from the Activities Organiser that Maureen had joined in with her programme; entertaining others with her flamboyant dancing.  I think it is likely that they may see further performances from my Dancing Queen the next time I need a break!

We had a pleasant surprise in the afternoon when one of our weekend carers popped in to say hello.  She had kindly offered to cover the shifts of her co-worker who has moved onto other things.  This was great news as she has an excellent rapport with Maureen.  Unfortunately, I made a joke that misfired with Maureen thinking she had cheekily popped in for lunch!

Early this morning, following a toilet break I managed to steer Maureen upstairs for the first time since her return home.  It was good to be together in the marital bedroom once again.

I’ve been following my new morning routine today.  Cyber friends like Henri continue to provide invaluable support on this journey.  Maureen’s early morning focus is on ‘how did we get here and have we moved to a foreign country?’  My Tea Boy duties are currently on hold as our milk is sour.  This will give us a chance to get back into the old routine with a little bit of cognitive stimulation in our local Spa Shop.  My only dilemma is whether to try to cajole Maureen out of the P J’s she has been wearing for the last three days before she ventures outside!

Dementia: ‘Listen To Carers’

Mixed Dementia,

As Carers Week draws to a close Beth Britton makes a salutary point: ‘Listen To Carers’. This extract from her blog, D4Dementia, is reproduced with her kind permission:

‘My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that

The challenge for all of us, however, is to find ways of capturing carer knowledge – at every juncture of a carer’s life – to benefit others, be they family carers or professionals. And if you are a health or social care professional, NEVER consider yourself more learned or accomplished than a family carer, be they a current or former family carer. That unique pull of circumstances and emotions creates a rarefied learning experience that really is – both positively and sometimes negatively – second to none’.

I consider myself very fortunate that our Key Worker always stresses the importance of ‘being led by me’.  He made this point again yesterday when I was asserting Maureen’s presentation is often a reaction rather than evidence of progression of dementia: time will tell if I’m really getting my message across!

Dementia: Fabulous Friday

Mixed Dementia,

Image result for fabulous friday pictures

Lots of good things happened yesterday hence Fabulous Friday:

  • Girl Friday put in another sterling performance engaging Maureen throughout her visit.  We will miss her when she goes on Maternity Leave.
  • Maureen’s Occupational Therapist called to offer support on cognitive stimulation.  She assured me that I was ‘doing all the right things’ and warmed to my ideas on community cognitive stimulation.  We have agreed to touch base at the end of next week to review progress on CCS.
  • Two Community Support Officers called following a chance meeting with their sergeant the previous evening.  They have us on their radar and will support us in all sorts of ways.
  • Maureen really came good in an evening visit to our local Spa Stores.  She reminded me that we needed sugar and looked very comfortable as we searched for bargains.

We had planned to go to Louth today as Maureen was keen to add to her wardrobe.  Unfortunately, after a beautiful sunrise rain has set in but the weather is not going to spoil our day.  If it remains wet we will call to see the friendly stallholder in Freeman Street Market.

Dementia: Please Cut Us Some Slack On DoLS

Mixed Dementia, ,

Image result for deprivation of liberty safeguards picture

It was clearly not in Maureen’s Best Interests to let her walk by herself yesterday because the pavement was littered with preparation for the ‘Bin Men’s’ arrival this morning  So last night I stayed by her side during Circuit Training and commented on our route as we walked hand in hand.  I’m seeking to break down our route so that it becomes so familiar to Maureen that she will be able to walk around the block almost with her eyes closed.

I would assert that at this moment in time it is not in Maureen’s Best Interests to seek approval from the Court of Protection for DoLS within our home.   Professional staff who have to work within the confines of the Mental Capacity Act are seeking to move swiftly down that road.  I’m hoping to buy a little more time to see if Maureen can become safe in the community once again.

The Mental Capacity Act and DoLS are new territories for me.  I will be embarking on an eLearning exercise and seeking guidance from a number of quarters this morning. What I’m hoping is to discover is means of maintaining Maureen’s liberty for a while longer.

I have deliberately let our milk stocks run low this morning anticipating that Maureen will accompany me to our Spa Stores again shortly.   She was with me almost as they opened yesterday morning seemingly at home in the company of friendly faces.  If I encourage her to take ‘baby steps’ there is so much more to come from our early morning trips down the road.  Where better to seek cognitive stimulation than in the community? It would be hypocritical for me to see any other way forward after my lengthy professional career as a Community Educator.

I’m not convinced that Maureen’s presentation at the moment is just about the progression of dementia.  I think it is predominantly a reaction to her stay in Ashgrove.   She is terrified this morning of being left by herself. Yesterday, she was afraid that I would put her in the hospital again – her explanation for a recent stay in a Care Home.  I was tempted to tell her that I couldn’t afford to do that as they have overcharged us and still cannot find some missing items of clothing.  She has also told me she doesn’t want another baby: her description of the pain she endured following the work of District Nurses to cure her severe constipation.

Image result for superwoman pictures

There are possibilities for a really positive development this afternoon.  I have engaged a Private Carer for a couple of hours.  She is a Dementia Specialist and  I have tasked her with solving the great underwear crisis. This is not to persuade Maureen from dressing like Superwoman.  I solved that yesterday following advice from our Key Worker.  It is to help Maureen find underwear that she feels comfortable in.  I’m sure my models in M&S will miss me but all good things have to come to an end!

Vascular Dementia: ‘You Think You’ve Got It Then It Changes’

Mixed Dementia, ,

Image result for Vascular Dementia Cartoon

As I drove Maureen around last night attempting to deal with her Sundowning I saw a second possible enemy: the full moon.  It then struck me that I was probably dealing with double trouble.

Music had created a very positive atmosphere for us both throughout the day and evening.  Our Night Sitter had an early morning baptism of sound before the end of her shift.  We were still going strong listening to UB 40 when Maureen’s Care Coordinator and a colleague arrived almost three hours later.

In the evening we moved to the dining room with Dr Hook on vinyl followed by Nat King Cole.  As the resident DJ either with YouTube or a record player at hand, I use music to tap into Maureen’s emotional memory of good times that we have shared and her teenage years putting records on the family radiogram.

As the evening light began to fade Maureen became restless and I suggested a trip into Cleethorpes.  Once I saw the full moon through the windscreen of our car  I wondered about the wisdom of my suggestion.  When we arrived back home Maureen went into her ‘I don’t live here’ routine and demanded to be taken home.  After a while, I tried to shift her perspective with another car journey and a ‘party piece’ that had worked on previous occasions.

I think Maureen went along with my ‘party piece’  thinking her ‘trickster’ was just up to another prank saying he had ‘just returned from work’.  It may have been the cold night air that led me to give her insufficient time to forget I had dropped her off a few minutes earlier.  However, it did give me a few minutes to escape from the vitriol of being an untrustworthy geezer who was always kidnapping women!

As a DJ I can always pick them: those tunes that will tap into positive periods of Maureen life:  When it comes to other aspects of her presentation it’s trial and error.   Sometimes my party pieces do the trick at others they add substance to her rhetoric that I’m mentally ill and up to no good.  However,  when the going gets really tough and nothing seems to have any impact I’m consoled by the words of Maureen’s Care Coordinator: ‘with vascular dementia you think you’ve got it then it changes’.

Postscript:

Maureen’s Care Coordinator often tells me ‘you are not a robot’.  With no disrespect to her I think I prefer a ‘machine’ analogy:

References linked to today’s post:  

David Sheard: Feelings

 Oliver Sacks: Music Therapy

Brown University: the benefits of personalised music for residents with dementia in Nursing Homes

Dementia: A Headless Chicken?

minimising distress, ,

Image result for Rushing Around Like Headless Chicken PictureI had a stark reminder early this morning that I’m trying to do too much.  Last night I was so exhausted that I went to bed at half-past eight and left Maureen to her own devices. Five hours or so later I found her sitting on the sofa looking terrified and desperate to relieve herself but no idea where to find the bathroom.   She was so relieved in all sorts of ways to see me, particularly as there had been ‘a strange man in the room again’.

It is painfully obvious that I’m not able to cover all bases at the moment.  I’m trying to solve too many issues and wearing myself out often running around like a headless chicken.  Tiredness kills when you are a driver: it causes distress when you are a Care Partner.

The bookcase in the lounge has now predominantly become Maureen’s space with lots of opportunities for cognitive stimulation.  I need to summon further support from Occupational Therapy to see how the remainder of the house can become more supportive of Maureen’s needs.  However, too many changes could well cause further confusion and a focus on our lounge towards the end of the month would be sensible.

Maureen’s refusal to engage in personal care or take her medication continues to cause concern.   All carers have been alerted to the need to try and get Maureen to shower and change her clothes.  The medication issue is something I will need to discuss with her GP. The progress on these issues will be reviewed with our Key Worker when he visits on Friday.

The ‘headless chicken’ is also painfully aware of the stiffness in his body after a consultation with a Fitness Instructor at  Cleethorpes Leisure Centre yesterday morning.  He has now decided that hydrotherapy is preferable to Tai Chi and will be walking on water later this morning!  Cue Loudon Wainright:

Footnote: Just had a lovely moment after seeing Maureen looking tearful.  When I asked her why she was looking so sad she said:  I’m going to miss you when I go home.’