All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

Dementia: A Costly Mistake

General, Uncategorized

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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: Time To Listen

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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

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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

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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?

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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

General, Uncategorized

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: Feeling The Fear

Uncategorized

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Maureen was terrified yesterday as insight into her condition overwhelmed her throughout the day.  Her fears that someone was watching us or preparing to break into our house meant that she kept close to me throughout the day and night.  The woman who often wants to be alone in bed pleaded with me to be beside her last night.  Fortunately, we have both had the best night’s sleep we have had for ages.

I called in the troops to help me address Maureen’s current presentation.  Gary our social worker was on the case yesterday morning as soon as our meeting began.  He has petitioned the Mental Health team with a request for a Care Coordinator for Maureen.  He also counselled me on the importance of keeping well so that I could continue to look after Maureen at home.  He has requested substantial carer sits alternate Wednesdays, and encouraged me to set up regular respite breaks using Ashgrove Care Home.

My evening call to the Home Treatment Team also let further light into a fairly dismal day.  Amanda is exploring the availability of support from Occupational Therapy that could lead to the one to one support from Maureen.

Susan Macaulay put the icing on the cake this morning with comments on this Blog of a  Webinar on Sleep and Dementia.  My cyber pal Kate Swaffer also posted some further useful items on Facebook that are even more grist for the mill.

Camomile Tea is on my shopping list today: another natural remedy that might just help us both with improving our sleep patterns.  Sincere thanks to all who try to support us as we try to stop that ‘Elephant in the room’ from spoiling our lives.

 

 

Dementia: Having A Hard Time?

Mixed Dementia

Image result for Time Travelling Dementia PictureAbout an hour ago Maureen told me she was ready to go home to her family.  She was well equipped for the journey with an iron, her boots and a butter knife in hand.  As we travelled around Cleethorpes, Maureen told me her husband was a car delivery driver and her three children were still at school.

She gave me a peck on the cheek when I dropped her off and thanked me for bringing her home.  I returned a short while afterwards to find her walking down the street.  She was clearly pleased to see me and we returned to the house as husband and wife again.

As we sat chatting Maureen was anxious to tell me that she kept forgetting things.  She remembered someone telling her that she had ‘memory problems and how hard life had been for her recently’.  As she relayed her concerns she talked about seeing her G P about her faltering memory.

‘Wanting to go home or asking me to take her back to her husband’, is nothing new.  My guess is that she will forget this morning’s concerns and carry on in denial:  facing up to the reality of her condition may be more than she can cope with at the moment.  That is why my discussions with our social worker about having a Care Coordinator for Maureen is significant this morning:  Maureen needs someone with professional expertise to help her put her feelings, and concerns, into perspective.

Dementia: Preventing Carer Burnout

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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

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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.