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Dementia: A Significant Distraction

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I was running out of gas yesterday afternoon as Maureen continued on her mission ‘to go home’.  As soon as I arrived back from shopping she was on the case moving our belongings from the house to the car.  Nothing seemed to shift her from sorting out what we needed to take with us, and what could be left behind.  I tried every trick in the book to distract her but even the prospect of lunch failed: ‘she wasn’t hungry’.

Maureen waited patiently as I ate some soup and was then off again.  Fortunately, I knew that if I played for time reinforcements were pending. Marie from the Home Treatment Team had phoned earlier in the day to say that she would be with us around 2 pm.  During a break in proceedings, I managed to get a message to Marie about Maureen’s current presentation.  When she breezed into our house she had Maureen in the garden within minutes, putting our washing out on the line.  I needed a breather after a busy morning so I cycled to a nearby post box to send some mail.  Laughter greeted me on my return as Maureen and Marie foraged in our garden.  I left them to it and retired to my office in our box room.

Marie stayed with Maureen for over an hour.  I popped downstairs occasionally to make the odd intervention or join in with the laughter that was a constant feature of their intercourse. As Marie’s visit drew to a close she mentioned that she would return next week to go out with Maureen for a walk.  She also mentioned that it would be helpful if I could find out if our social dancing group was still taking place.

Maureen was very animated  following Marie’s visit.  She was clearly excited about being in Marie’s company again.  In fact, Marie dominated her thinking and conversation until she admitted she needed to rest after such a busy afternoon.

The Home Treatment Team have come to my rescue on many occasions since Maureen’s diagnosis of dementia.  I’m reluctant to single anyone out for praise as they are a team of professionals who are highly skilled at crisis intervention.  Yesterday Marie, like many of her colleagues, was able to distract and redirect Maureen to good effect.  How fortunate we are to have such a skilled team available to us: providing person-centred care to support us staying together in our own home.

 

Dementia: From Dreams To Reality

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As soon as I saw the above slide from Dementia Alliance International I knew it had to be the starting point for this morning’s post. We all need to make a contribution to making the dream become reality: starting in our own homes and joining with others to widen the debate. As the day progressed yesterday I had to take a number of reality checks that I could have done without.

Once again my plans for respite are in tatters.  I had overlooked how much notice  Care Homes need before they are able to accept residents for respite.  As reasonable as this is it will prove problematic as we are both waiting for medical consultations in the next few weeks: Maureen needs a scan and I need substantial dental treatment.

I had a stark reality check when I returned from my dental appointment.  As I drew up in the car Maureen was in the process of leaving the house with a handful of mail.  The worrying thing is that had I been a little longer I would have had no idea of when she left the house or that she was carrying mail.  It is time to reconsider leaving Maureen to her own devices for more than a few minutes.

My ongoing struggle dealing with Maureen’s reality continues.  She woke early this morning telling me that she was going to see ‘if she could go home, as she is no longer receiving any treatment’.  It will be interesting to see if my continual attempts at redirection can shift her thinking and ‘keep her here a while longer’!

A little later in the morning Maureen was clearly confusing me with her previous husband, as she explained the strict nature of an upbringing I never had.  A few minutes ago Maureen was standing by the phone wanting the number for her mother as she is concerned she hasn’t spoken to her for ages.  I’m hoping that my line of it being ‘too early holds’, my singing an appropriate song distracted, and encouraging her into making a sandwich redirected her thoughts.  Any carer for someone who has dementia has to be eternally grateful for the work of Teepa Snow who has outlined such helpful strategies for supporting someone who has dementia.

My focus on reality this morning reminds me of something I once read in the gents toilet when I was a student at Westhill College: ‘Reality is an illusion caused by lack of alcohol’.  I am beginning to wonder if it would help us both if we occasionally took to the booze again?

Dementia: Showing Gratitude

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One of my fellow Bloggers has taught me the importance of Showing Gratitude.  Jen does it on most days through her Blog and Facebook page.  Her posts are an inspiration showing how to be positive, and grateful, even in the face of adversity.  I am very grateful to Jen for teaching me this important lesson.

I now have 48 hours to decide how many nominations to make in the local CCG’s annual Health and Social Care Awards:  I’m spoiled for choice – thankfully there are 13 categories.  I firmly believe it is important to acknowledge the quality of dementia services available in this area. The excellent support I received yesterday gives a glimpse of what is on offer.

I phoned our Medical Centre before nine, had a response before ten and saw our G P before three.  This was a continuation of the excellent support we always receive from all staff at Clee Medical Centre.  Dr Munjal addressed my health concerns and made arrangements to continue his thoughtful support of Maureen, who was too cold to accompany me to the appointment.

My scheduled meeting with Mel, my Admiral Nurse, allowed me to explore several matters.  Mel’s ongoing message ‘to look after me’ was carefully put, along with an exploration of current issues with Maureen’s presentation.

I received a telephone call in the afternoon from Occupational Therapy who were offering to meet Maureen and suggest activities that might be of interest.  Following some discussion about our experiences at Singing For The Brain I suggested that intervention by Support Workers from the local Alzheimer’s Society might be more appropriate.  A couple of hours later I managed to speak with Holly one of the Support Workers and she and her colleague will be calling in to meet us next Wednesday.

Following our evening meal and Maureen in good voice to the Sound of Music on the record player, I caught up with my Email.  I was pleased to receive a response from Christine, Head of Casework from Focus Adult Social Care, (still on duty after 7 pm) to acknowledge my gratitude for the intervention of her staff on Monday evening.

As the evening progressed I always knew that support was available long into the night.  Focus Adult Social Care never shut up shop and all I ever need to do is ring 256256 and advice and support will be at hand.  In addition, once the Home Treatment Team sign off at 10 pm I can always get specialist advice from mental health staff on the Konar Suite.

I am very grateful for the range of provision in this area, and the professionalism of staff as they attempt to provide support to those who are dealing with dementia 24/7.  It is such a shame that other areas of the country have such limited resources available to support those who are facing a similar journey to ours.

 

Dementia: Withholding Bad News

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There is no point whatsoever in giving Maureen any bad news: she has enough sadness in her life dealing with dementia.  Today is a particularly significant day in both of our lives.  It is Esme, my youngest daughter’s 29th birthday. I have already upheld my tradition and sung happy birthday to her in her absence – I do this whenever I remember it is someone’s birthday  There is no point in reminding Maureen that Esme wants nothing to do with me at the moment, and wouldn’t appreciate any form of contact.  However, when I get a quiet moment I won’t be able to resist listening to ‘Groovy Kind Of Love’ to remind myself of dancing with Esme in my arms when she was a baby:

Today is also the funeral of one of Maureen’s oldest friends.  When I received the sad news of Janet’s passing last week I mentioned our circumstances to her son and explained that attending the funeral was not an option.  There is no point in taking Maureen to events that would cause confusion, and lead to distress .

Maureen’s youngest son is visiting at the weekend.  It is his birthday a few days later. He is a Sunderland supporter, and we managed to snap up an appropriate polo shirt earlier in the year.  How fortunate that we will be able to have an early celebration of his birthday without reminding Maureen that she no longer has any concept of time, place or person.

I’m meeting Mel my Admiral Nurse this morning.   I need to chat over my responses to Maureen ‘wanting to go home’.  I also skimmed an interesting article yesterday that suggested trying to improve short-term memory is futile and focusing on the past might be more productive.  Such discussions will be academic unless I schedule regular respite into my schedule.  If I don’t look after my own well-being Maureen’s care will be taken out of my hands!

Dementia: Don’t Rock The Boat!

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We had a lovely morning yesterday as Chloe (Girl Monday) worked her magic with Maureen as I stayed in the background.  My phone call to the Alzheimer’s Society was really productive: confirming that it was the week that ‘Singing For The Brain’ was on, and additional support that they could offer.  Maureen seemed really keen to pop into the Memorial Hall to see if singing with other people was to our liking.  However, she soon made it clear that she was struggling in new surroundings.  At first, she refused to join in with any of the numbers; either making fun of what was going on or ridiculing what was being sung with her body language or adding naughty lines to songs.  We took our leave at the interval and then things became really challenging.

At first, she refused to join in with any of the numbers; either making fun of what was going including ridiculing what was being sung with her body language.  She also added naughty lines to songs, especially to Love and Marriage – where she made it clear what she thought of such unions.  Consequently, we took our leave at the interval, and then things became really challenging.

The vitriol began as soon as we were out of earshot of our fellow singers.  It continued for some time, along with confusion about who I was and where we lived.  When we arrived home Maureen was reluctant to accompany me into the house, so I made out I was ‘dropping her off’ and returning to my own home.  I took my leave and popped next door to chat to neighbours.  I returned a short while later to an empty house.

It took me a few minutes to track Maureen down walking on her normal route towards the Country Park.  She reluctantly agreed to join me ‘in her car, which I had stolen once again’.  When we returned home she refused to get out of the car.  Despite my best efforts, she chose to remain in the car and it took two social workers to move her from the car to the house.

Maureen’s story to my ‘rescue rangers’, who had responded promptly to my call for help, was that she was ‘waiting for Paul to come home’.  Once in the house tea settled the situation, and Maureen continued to confabulate as she gave our visitors her version of  the events of the afternoon. Things went relatively smoothly for the rest of the evening, with Maureen eating a hearty meal and attempting to help tidy up debris the kitchen.  She was clearly tired after a busy day without our normal siesta.  When she took to the sofa shortly after 7 pm I thought that would be it for the night – but no such luck.

Maureen woke around 8 pm feeling cold and went back to sleep quickly after finding some additional clothing.  She was awake again at 1.30 am determined to light up the house as she went on some sort of mission.  Her confusion was paramount as I tried to convince her that more sleep for us both would be a good idea.  Half an hour later she declined my suggestion of moving upstairs to sleep; making it quite clear that she normally slept on the sofa.

I am tired and disappointed by the events of the last 12 hours or so.  I’m drafting this at a ridiculous hour to try to clear my mind as part of my strategy to get more sleep.  It seems likely that ‘Rocking The Boat’ has upset the apple cart.  However, if I get You Are My Sunshine on YouTube this morning a new day will have begun.  If I call up the right numbers I might even get Maureen on the dance floor: providing she knows who I am!

Footnote:  I managed to sleep for another couple of hours after drafting the above passages, and returned to the lounge/bedroom after a bathroom visit to hear Maureen singing ‘Good morning, good morning’.  It was a relief to hear my ‘Singer Lady’ (as I often call her), in such good voice. It will be interesting to see if she shifts her position on the best place to do our singing in the next couple of weeks.  I wouldn’t dare to predict if yesterday was our one and only appearance at ‘Singing For The Brain’.  What I am sure about is that I cannot allow the apathy of ‘Prescribed Disengagement’ (Swaffer)to slip into our lives. Therefore, I have to take up the challenge of moving our dancing from the kitchen and lounge back to the Church Hall – watch this space!

Dementia: OMG Struggling With DNA

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Image result for Confused Dementia PictureOnce Maureen’s dementia became obvious Iwona our local pharmacist stressed the importance of Do Not Absorb: to ignore any vitriol that comes in my direction.  I think I might just pop in and see her shortly for some ‘medication’ to help me boost my DNA this morning.

Maureen’s vitriol began yesterday afternoon and resumed at midnight.  She went on walkabouts in the afternoon so I grabbed my bike to track her down.  When I caught up with her a few streets away she ignored me as she shuffled along in her slippers.  As I trailed her she eventually told me ‘she needed to get back home to inform the police that her car had been stolen’.  It took me an hour to shepherd her in the direction of home, then a quick dash to pick up the car : ‘the thief’ then drove her the short distance home.

Maureen was tired from her afternoon hike so she went to bed around 8 pm.  She woke at midnight – shouting for help because ‘someone was on a ladder at her bedroom window’.  My efforts to help were met with derision and questions about my ability to keep her safe.  A couple of hours later she was awake again concerned that ‘someone had stolen her clothes and she had nothing to wear’.

Yesterday was not a good day by any stretch of the imagination; with Maureen’s presentation once again a cause for concern.  Lack of appropriate personnel at the meeting to discuss requested psychological support means that it is likely to be a few weeks before that issue can be progressed.

One positive this morning is that my sister and her husband are visiting this area for the weekend.  They would give any Care Partner a boost; with Rob firmly grounded in the real world of engineering, and Jill dementia friendly from her years of supporting mum.

Dementia: Music Leads To Recovery

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Image result for An Amazing Recovery Dementia PictureMaureen amazed me once again yesterday evening when she sang and danced along to Bing Crosby for over an hour.  She had woken from our late siesta and immediately burst into song with ‘good morning good morning…’ so I went for it and fired up the record player and put Bing on the deck.  The amazing part of all this: she had been on her knees in the afternoon freaked out by fear of the unknown.

It is unusual if music doesn’t lift Maureen’s mood and I generally hit the right note knowing who to put on the deck or call up on YouTube.  I also have a fair idea of what triggered her fall into despair: another new kid on the block.  That is why I sent the new carer off early and dragged Maureen on a shopping trip in the afternoon.  I knew that I couldn’t risk repeating my mistake of earlier in the week.

Chloe Maureen’s favourite carer will be here at ten.  If I could clone that woman I would and share her with all and sundry.  Chloe is the epitome of a good carer and has taught me so much about dementia and how to support Maureen.  Gail will be back on Wednesday and Thursday, she is another sound example of person-centred care.  I have every confidence that Hayley and Hannah from Hica ( our Agency) will pull out all the stops to find a suitable replacement Girl Tuesday as soon as possible.

Maureen needs consistency and routine.  I have messed up by seeking changes in the pattern of sits to suit my needs: A BIG MISTAKE.   Fortunately, we are back on the straight and narrow from next week with all calls 10 until 1.  Maureen doesn’t need some SILLY B (ME) messing up her routine and Hica could certainly do without the additional work I have caused: must pop in with some chocolate later in the day!

Dementia: Playing My Cards Right

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Once again I want to put on record the excellent support we receive from Focus Adult Social Work.  In the last few months, Gary our social worker has worked tirelessly to update our Support Plans to reflect our current situation.  That work has now been completed along with sorting out the annual direct payment that is generously provided in this area.

Gary and I will be meeting with our Care Agencies early next month to ensure that their Care Plans have been updated.  This will also be an opportunity to discuss the need for continuity of carers and appropriate recording of Maureen’s presentation.

We are also hoping that our efforts to get Maureen psychological support will come to fruition at a meeting that is taking place on Friday.  The Home Treatment Team always come to our aid in a crisis but we are requesting  ongoing support from a named professional.

Our day went well yesterday with Dianne, refreshed from her holiday in Portugal, putting in a great shift.  Maureen was a revelation in her company responding well to Dianne’s interventions.  I was happy to leave them and pop out to the shops: such a relief that she was in safe hands after an unfortunate experience on Tuesday.

Clarice Maureen’s aunt visited in the afternoon.  There is always laughter in the house when those two get together as they reminisce about the good old days.  Yesterday was no exception and we took up Clarice’s offer of a cup of tea when we returned her home and the girls ‘continued to yarn’ .

After tea, I got out a pack of cards and played Patience as Maureen sat alongside me on the sofa.  She watched intensely as I failed to complete the game after several attempts.  I’m tempted to build card playing into our evening routine and persuade  Maureen into the game – she has often told me that she was a great fan of Clock Patience when she was younger.

My lesson from yesterday is to stick with my patience and continue to play my cards right.

 

 

Dementia: A Costly Mistake

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I made a silly mistake yesterday afternoon and paid for it later with another night of disturbed sleep.  One of my golden rules is to try to induct new carers by staying around and coaching them in their first few visits. As Mel my Admiral Nurse often says ‘she wouldn’t leave her cat with someone she didn’t know’.  However, I was so determined to resolve the broken zip on Maureen’s favourite cardigan that I left my dear wife with an unknown quantity for well over an hour yesterday.

I realised my mistake when Maureen didn’t celebrate the result of my endeavours.  When the carer left Maureen revealed all with; ‘she never stopped talking’.  What I had done was totally unfair on both parties as is the behaviour of the Care Agency.

Our ‘Silly Mistake’, mine and the Care Agency’s, is a prime example of Fail To Plan: Plan To Fail.  Carers are not magicians they need information and coaching when they are dealing with a new call.  I’m hoping that the meeting that our social worker has agreed to convene with both of our Care Agencies (more on this later), will ensure that in future new staff are prepared before they visit.  In future, I do not plan to  leave Maureen with new kids on the block before they have been inducted!

Footnote: The one thing I did get right yesterday was calling off today’s day trip to Coventry as I’m worn out once again after another night with little sleep.

 

 

Dementia: She Taught Me To Yodel

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Maureen was in good form, and voice, for most of yesterday greeting Hilary our carer, as Frank Ifield, with a pair of woollen tights on her head as you will see from this video clip.

She spent quite a time yesterday afternoon telling me how much she enjoyed her time with Hilary.  Once again she had been chatting about the need to see someone about her poor short-term memory.  There appears to be some hopeful possibilities on this front, with news from our social worker that the Memory Service are considering how to provide appropriate support.

Maureen has been up since 5 am this morning wanting to make sure that she is available to let Chloe today’s carer in when she arrives at 10 ‘o’clock.  She is looking forward to having her hair done in preparation for a possible trip to Nottingham, to see family, at the weekend.

Footnote: I’ve just checked it out, to be on the safe side, to see that like myself Frank Ifield was indeed a Coventry Kid!