Category Archives: General

Dementia: Playing My Cards Right

Image result for playing your cards right quotes

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

Image result for A costly mistake picture

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: Time To Listen

Image result for Time to listen graphicIt is time to do something that I often struggle to do: to listen to other people before I continue to plough my own furrow.  My body and other people are telling me I have to change my ways or my efforts to keep Maureen at home for as long as possible will fail.

My plans for tomorrow are a typical example of my belligerence.  A 14 hour day filled with emotion can only leave me drained and my immune system further weakened.  I would only return from my trip to Coventry exhausted, unfulfilled and unfit to look after Maureen.

It is 4.30 am and I have been lying awake for a while; reluctant to face reality.  At 70 years of age, I am ‘no Spring Chicken’ as Gary our social worker kindly pointed out the other day.  There are no days off for  a Care Partner and I need to be on my toes 24/7.  Therefore, exhausting day trips to Coventry have to become a thing of the past.

I simply have to bite the bullet and schedule a further stint in Ashgrove Care Home for Maureen.  Then I can have an overnight stay in Coventry and drive back safely the next day.  This will also mean that I can take my mum out for a ride in the car when I visit.  She will forget that I have been as soon as I get on the M69 to travel back to Cleethorpes. However, seeing the pleasure on her face as she navigates a ’99’ in the front seat of our car,  as we sit in the car park of Coombe Park watching young children play, is something I will never forget.

I hope those people who have kindly facilitated a 14-hour carer sit tomorrow will understand my need to review my plans.  Perhaps they will take some solace that I’m showing signs of being prepared to listen to what they have been telling me for quite some time!  I will also seek an appointment with our G P this morning to discuss several things that are a cause for concern at the moment.

Dementia: It’s Time To Walk Away

odxTk.jpg

The going got particularly tough last night, as it has been on several occasions, in the last week.  Maureen was lambasting me for the appalling state of this ‘Care Home’.  She spent a large part of the day trying to do up a broken zip on her favourite cardigan frequently expressing her frustration that ‘this place is rubbish’   She exclaimed that: ‘everywhere in the house stinks, and there is nowhere for her to sleep in this dump’.

It was one of those occasions where I had to  take several deep breaths, walk away, and hope that things would be a little different with the passing of time.

Maureen returned to the attack at 4 am this morning; blasting me with both barrels for letting other people steal her clothes.  I tried several Compassionate Communication strategies without success; eventually walked away and left her to it.  YouTube became my escape from the ongoing rant and I chose songs to reflect the struggle when Mrs Dementia is at full throttle.  If you visit my Good Music page you will hear what I mean

Unfortunately, we have new kids (carers) on the block on Tuesday and Thursday.  I’m hoping that the Care Agency will be able to switch Hilary into one of those slots as Maureen really enjoyed her company last week – two new faces in a week will not help at all

Dianne, one of our carers, has agreed to do a long shift on Wednesday so I can visit family in Coventry.  If my sleep pattern continues to improve I might even drive down and call in at a branch of Leading Labels, near Lincoln, to see if I can find a replacement cardigan in the same colour as the one that is damaged.  However, I’m not naive enough to expect any praise if I manage to find another cardigan.  The more likely scenario it is that I will be accused of desertion: compassion and empathy went out of the window here as soon as dementia took its toll on Maureen’s personality.

Dementia: Compassionate Communication

Image result for Compassionate Communication With the Memory Impaired Picture

I was sorting out some of my paperwork on dementia yesterday and came across ‘Compassionate Communication with the Memory Impaired’ by Liz Aires.  I scanned it again at the time and hope I remembered the basics at 2 ‘o’ clock this morning when Maureen woke and demanded to know why I was in her bed:

Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer’s Association and Former Caregiver

DON’T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.

DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate ‘but’ from your vocabulary; substitute ‘nevertheless.’
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.

Maureen’s response to my explanations was to suggest divorce if I wanted to behave like a teenager and get into bed with anybody!

Dementia: Dream or Reality?

Image result for Dreams and reality  picture

I woke up from a vivid  dream this morning struggling to grasp where I was in my life story.  This frightening start to the day gave me a glimpse of what it might be like for Maureen each time she wakes after sleeping.  Only a few minutes ago I heard her crying in the bedroom as she had woken and not known where she was.

Yesterday afternoon she told me that she had been dreaming of life as a child; waiting to go into the Saturday Morning Matinee at the Empire in Nottingham.   Later in the evening, she was frightened because she thought there was a strange man in the house.

Our sleep patterns seem to be improving slightly with Maureen accepting my gentle encouragement ‘to try for another hour’ when she wakes during the night.  The Webinar on Sleep and Dementia has also given me some further ideas on how we can both get a good night’s sleep:thank you Amazing Susan for pointing me in this direction.

When Maureen woke this morning she was concerned that she didn’t know what we were going to do today.  So I replied in my normal fashion: ‘to have an easy day’.

 

 

 

Dementia: She Taught Me To Yodel

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!

 

Dementia: Preventing Carer Burnout

Image result for Carer Burnout Picture

My post yesterday on Unison’s Ethical Care Charter has got me thinking.  Where is the Charter for Care Partners?  Which is the best organisation to support us in our struggles  for adequate support to prevent Burnout?

Maureen has been awake since 1 am this morning; despite my best efforts to persuade her to go back to sleep: it’s time to seek further help on this front.  It’s fortunate I’m meeting Gary, our social worker, this morning as getting more rest by securing regular respite will be an important feature of our discussions.  Attending meditation sessions like I did yesterday are helpful but they can’t compensate for the sleep disturbance that is  feature of my life at the moment.

Dementia: Unison’s Ethical Care Charter

 

I have just caught sight of Unisons Ethical Care Charter which is on the Agenda for our Branch Labour Party Meeeting on Friday.  I hope the Charter becomes adopted throughout the United Kingdom, so that those who work in the secto,r and those who need their services, get the deal they both deserve.

Dementia: Seeing The Light

Image result for Seeing The Light Picture

Maureen and I both saw the light in a number of ways in the last 24 hours.  We played musical beds again last night moving from the lounge to the bedroom; then back downstairs again.  When I popped in to check on her early doors I noticed something strange on the bed. I thought no more of it and returned to the spare room.  When I spoke to Maureen this morning she thought there was a baby beside her in a basket on the bed. A little later I saw the culprit – a basket of washing that I had left on the bed earlier in the evening.

I have realised that lighting is so important in our lives now.  If I leave lights on in the house when we go to bed it means that Maureen can move around without being frightened by shapes in dark corners.  Thankfully babies in baskets are not a threat when they are sharing your bed!

We tripped the light fantastic again last night listening to Frank Sinatra and Nat King Cole.  Maureen also burst into song and gave a lovely rendition of Rambling Rose, which created great amusement when I zapped it to her son on the mobile phone.  Unfortunately, I have not figured how to post in on here yet!

I managed to brighten up my morning yesterday with a visit to the Leisure Centre.  I had forgotten how warm water, and good conversation, regenerates the body and soul.  If things go to plan this afternoon I hope to gain similar benefit from a local Meditation Class.