Category Archives: General

Dementia: No More ‘Slap and Tickle’

General

I made a silly mistake yesterday evening: I forgot Maureen had dementia.  She hadn’t been awake long from a rest on the sofa when I immediately started ‘fooling around’ – no not in that way at my age.  She had discarded an uncomfortable bra and left it on the floor. I made a passing reference to it not being my size.  In for a penny in for a pound; as she bent over I slapped her on the bum -both cheeks.  The reprimand was immediate: ‘don’t do that’, said very sternly.  What else could I expect her to say when a someone she probably didn’t recognise had smacked on the rear?  Then a short while afterwards came a very pointed comment as Maureen said ‘I haven’t forgotten everything you know’.  She went on to say that although she couldn’t remember what happened yesterday that her long term memory was good.  I did my best to reassure her that she was doing well, and all we needed to do was concentrate on enjoying our lives together.

Maureen’s reference to her poor short-term memory didn’t really take me by surprise.  On Dementia: on Sunday evening she said ‘I’ve lost my memory again’.  This is clearly a new stage in her recovery from stroke and a fresh challenge for yours truly.  It comes at a time when a referral back to the Memory Service is underway.  We are all going to have to be vigilant to make sure there is a productive outcome from the next stage of our journey.

Although ‘slap and tickle’ is out of the question, music isn’t and we had a lovely evening singing along for a couple of hours to some of our old favourites.  Every time I put another record on the deck Maureen said ‘you’ve got more’. I love to hear her singing along to Anne Murray.

Then it got even better.  I just slipped in beside her in the marital bed, and we slept together as if it was the most natural thing to do in the world.  I woke around 4 am with pain in lots of joints so I got up and moved around.  Fortunately the pain has gone now but not a burning question in my mind. I’m just wondering if by trying to resolve the problems with my shoulder I have spooked Maureen.  Perhaps it’s not sensible to leave her to her own devices while I trot off to the Leisure Centre.  I’m going to see if exercising at home helps to calm things down a little. Who knows what might happen next if we continue to sleep together?

 

Dementia: Sweet Dreams

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I’ve just had a lovely catch up sleep in the Girls Dormitory.  In my dreams I kept seeing this woman.  I’m sure I served her tea here yesterday.  I wonder if she’s asleep on the sofa?

Dementia: Great Teamwork

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It was far from easy to get Maureen to see a G P yesterday.  It required  teamwork to get her to the Medical Centre and achieve a good outcome.

Gail our carer played a blinder easing Maureen toward her appointment at noon.  While I tidied up my vegetable patch she persuaded Maureen to provide a sample that was needed to check for UTI.  All seemed well until we got to our Medical Centre when Maureen claimed she had only come to drop off her sample.  Gail came to my rescue as Maureen gave me the cold shoulder along with some verbal when the receptionist informed her she had an appointment to see a GP.

I took a back seat for a while and left the girls to it.  After a while I sat beside Maureen and asked her if she minded me coming in with her so I could get further advice on my shoulder.

Dr Sibtain was excellent with Maureen. He would have been awarded a badge for following the approach I Blogged about yesterday:

What is the Answer for Dementia Related Behaviors?

His message to us was quite simple ‘don’t dwell on issues, enjoy the good times and find nice things to do’.  How fortunate we are to have so many compassionate people helping us on our journey.  More team members have come into play today to help us on our journey.

Sue our social worker has encouraged an assessment by the Mental Health Team.  Dr Munjal has returned to work this morning and is referring Maureen back to the Memory Service for assessment.  They are both well aware of how carefully we have to tread because of Maureen’s ongoing fear that we are all conspiring to lock her away.

Dementia: News From The Night Shift

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When I was a machinist in the car industry I avoided night-shift like the plague. Fortunately, my mate on the opposite shift loved working night’s so I only ever did a total of a couple of months in my 8 year stint machining crankshafts.  Now I’m on duty 24/7 with an endless hours’ contract: when duty calls I have to deliver.

At around 1.30 this morning I heard Maureen on the move.  I joined her downstairs to find her looking out of the window.  She was concerned that the car was about to be stolen:  even my reassurance that it was quite safe made little difference.  She was convinced there were children and a dog in her vehicle.

Almost an hour later I’m hoping that she is bedded down on the sofa and this will allow me to be on standby for a few hours.  It’s unlikely I will risk going back to bed because if she could wake and panic because she is unsure where she is..  What I intend to do is tidy up for a while and then doze in an armchair close to the sofa.  I didn’t need to do that after all as Maureen decided that it was too cold to stay downstairs and went back to bed.  She’s been sleeping like a log for a couple of hours now.  A couple of hours later I went back to bed and have just woken after some more welcome rest

I hope to be able to talk things over with our G P today.  It is difficult to consider sleep after some of Maureen’s latest antics.  However, I need to develop a strategy to let events wash over me, as I do when she launches into a verbal attack. I need to take a leaf out of Maureen’s book and fall asleep almost as soon as my head hits the pillow.  If I don’t begin to do this soon I’m going to be in real trouble and that is something neither of us can afford.

Dementia: ‘Haven’t I Got A Sister ?’

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It’s 10 pm and I’m blogging to help me cope with the events of the last half an hour.  As Maureen completed her preparations to go to bed I heard her sobbing in the bathroom.  I went to console her and she said she ‘didn’t like sleeping by herself and haven’t I got a sister’.  It took me a while to settle her before she told me she wanted the bedroom to herself.  As I was about to close her bedroom door she said ‘who are you?’

I have no problem accepting that Maureen doesn’t know who I am at various times in the day.  My role is to minimise her distress and help her to feel safe.  However, I’m glad I’ll be able to watch a bit of footie on T V for a while as sleep doesn’t come easy when you see someone you love so upset.  It wouldn’t be so bad if I could do what comes naturally in such situations but any form of physical contact is risky when dementia is rampant with Maureen’s history.

Dementia: Sweet Dreams

General

I’ve just had a lovely catch up sleep in the Girls Dormitory.  In my dreams I kept seeing this woman.  I’m sure I served her tea here yesterday.  I wonder if she’s asleep on the sofa?

Dementia One Sheet To The Wind

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The picture above gives a glimpse of Maureen’s functional capacity.  It was taken on Monday after she had been trying to put a sheet on the line for some time.  When I went out to straighten it I found it was being held by a dozen pegs.

There are three people who have any idea of how Maureen really is.  Apart from me only Chloe and Gail see her in action: witnessing confusion and dwindling functional capacity. Maureen can still talk a good game and will do her best to convince anyone that she is functioning well: nothing could be further from the truth.

She was in good form when the G P checked her out today.  There is no sign of infection so we are either dealing with a dip or progression of her dementia.  His advice to ‘stay happy and remain active’ would have been forgotten as soon as the doors closed on our car.

I was pleased to see a display at our Medical Centre, this morning, encouraging carers to make themselves known to their G P.  Our usual G P is back on duty tomorrow and I intend to seek an appointment to chat to him about my caring role.  I will also make the point that only three of us are really aware of the level of Maureen’s confusion and dwindling functional capacity.

Dementia: Something Has To Give

General,

I have taken a number of measures to address the increased challenge of changes in Maureen’s presentation. Something has to give if I’m to have sufficient time and energy to meet Maureen’s needs.  I’ve decided  to drop out of a couple of distance learning courses on dementia.  I can use professional staff, the Alzheimer’s Reading Room, and Teepa’s Snow’s tutorials to address specific concerns as they arise.

I need to slow down on my attempts to make the house more Dementia Friendly.  My early morning assaults on various parts of the house have to stop.  Moving my clothes into the spare bedroom to help Maureen see that the front bedroom is hers will have to take its time. I have to learn to strike a balance between having a reasonable amount of rest and making the home environment more suited to Maureen’s needs.  Opportunities for day-time catch up rest need to be seized when the opportunity arises: I had a lovely couple of hours’ yesterday afternoon.

‘Maureen’s car’ will remain on the drive unless she needs me to take her somewhere or has given me permission to use it.

I have now requested that we shorten Monday and Wednesday’s carer sits by an hour, and have an additional two sit on Tuesday or Thursday.

My next away day has been pencilled in for April the 6th. We are going to review the arrangement for wall to wall care closer to the day, to address Maureen’s complaints about being ‘baby sat’.

We both need to have a health check with our G P.  It is possible that infection is causing changes in Maureen’s presentation.  I am always reassured that Dr Munjal keeps an open mind on additional medication being the answer to changes in presentation.  Current wisdom is that such medication should carry a  black box warning.

I need to chat to Dr Munjal about  my strategy to avoid surgery on my shoulder.  I also need to seek his advice on how to improve my sleep pattern and get more rest.

Our journey seems to be getting more arduous and we need to see if we can take an easier route.  We are fortunate that some of our advisers support our biopsychosocial approach to dementia.  I shudder to think what it must be like to have to deal with, and be surrounded by, those who are sticking to the biomedical model.

 

 

Dementia: Wear The Badge!

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I have recently signed up to MindStart and their approach to dealing with changes in ‘behaviours’ is very helpful to me at this moment in time.  It supports the approach I am now taking to changes in Maureen’s presentation.  Perhaps a badge or a tattoo might help me keep on track!

What is the Answer for Dementia Related Behaviors?

Dementia: Barking Up The Wrong Tree

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In the last few days I have been struggling to deal with changes in Maureen’s presentation. I have been focusing on her confusion and fears.  My detective work led me in the direction of a dip or further progression of dementia.  Then this morning I realised I had been barking up the wrong tree: focusing on symptoms rather than causes.  I had been going down a very risky path that may well have led to a referral to Mental Health and dodgy medication.

The trigger for the change in my thinking was something that Maureen said yesterday: ‘I’m being treated as if I’m stupid’.  That is a valid opinion from someone of high intellect.  As I have asserted on many occasions stroke has caused brain injury and Maureen’s recovery continues.  It is being hampered at the moment by fear and an approach to support that she regards as patronising.  Little wonder there are changes in her presentation: she is signalling she is not happy.

I am hoping that setting up the Girls’ and Boys’ Dormitories may help with the fear of men issue.  The initial signs are positive and I managed to sneak in for a brief cuddle early this morning.  There is more work to be done on helping Maureen  feel safe and establishing this is her home.

Helping Maureen to regain her confidence and become more assertive requires careful consideration.  The initial focus is easy: it is on my behaviour.  I need to follow Maureen mantra of ‘slowly slowly catchee monkey’ as I try to find a way of being that moves things in a positive direction.  As always I’ll keep you posted and look forward to feedback on how I’m doing.