Category Archives: General

Dementia: Looking Back: Looking Ahead [Week 6]

General

One thing I’m hoping for this week is that our arrangements for care are met as planned.  A mix up on Wednesday, and the weekend, meant that carers were not available on those  three days last week.

This week I’m going to see if keeping Maureen awake during the day will mean that we get more rest in the night.  Yesterday she slept most of the day and woke almost every hour in the night.  I will ask Chloe this morning’s carer to keep her busy this morning; then after a siesta in the afternoon I’ll try to keep her awake this evening.

I still wonder if  Maureen sleeps when she doesn’t know what else to do.  Television only holds her interest for short periods of time with Hidey High, on YouTube, one of our current favourites.  This evening I’ll see if  music along with a cross word, card games or dominoes might just do the trick.  If the going is good I might even put on a DVD that will help us to revise one or two of our dancing routines

Teepa Snow came to my rescue, again, yesterday afternoon when I was watching Maureen struggle for ages trying to find comfortable socks and shoes.  Taking deep breaths kept me on the straight and narrow at a difficult moment in another challenging day:

One of the early messages from my Admiral Nurse was to look at the work of Teepa Snow and I’m always glad I have taken her advice.  Teepa’s generosity in sharing her wisdom has been  invaluable as I travel on this unforgiving journey.

 

Dementia: Taking To The Air

General

I think Maureen got the days mixed up yesterday as Saturday became a day of rest.  She spent most of the day sleeping on the sofa and stayed there all night.  This could have  been another one of those ‘Duvet Days’ that we were told to expect following a stroke.

We both had a relatively restful night, apart from one incident where Maureen told me I would be in trouble with the police.  She warned me that I faced arrest for ‘taking people off the street and locking them in my house’.   That early morning warning has soon been forgotten to be replaced by: ‘what are we dong here; why I aren’t I in my own house?’

It is cool and dismal this morning and my challenge is to see if I can entice Maureen into some sort of activity.  I’m rather concerned that as Autumn progresses into Winter the coolness of the air will make ‘hibernation’ a distinct possibility with attendant deterioration.  I simply have to find ways of encouraging my butterfly to take to the air or she will forget how to fly..

 

Dementia: Sleep Disturbance

General

Image result for Sleep Disturbance In Dementia PicturesLast night Maureen woke three times during the night.  At 2 am she needed a drink and thought it was time for breakfast.  At 4 am she couldn’t stop coughing until I’d found her something to ease a tickle in her throat.  Two hours later she was concerned that the ‘little boy that she was looking after felt sick’.

Over the last couple of months I have picked up that there are initiatives, and research, in the pipeline that may help those with dementia and their Care Partners improve their sleep patterns.  The Manager of the Home Treatment Team and an Officer of the Clinical Commissioning Group have both mentioned relevant local initiatives.  The  Alzheimer’s Association have also commissioned research into sleep deficit within Care Homes.

In the next few days I hope to see if there is anything out there that might help the situation here.

Dementia: Finding The Missing Pieces

General

Image result for Finding The Missing pieces Picture

A couple of weeks ago I decided that solving a jigsaw would be a good way of spending these Autumn evenings.  My first venture was a complete waste of time as my purchase from a charity shop was very incomplete and I promptly returned to the shop.  I spent a couple of hours on a replacement, from our local library, last night.  We had YouTube on in the background as I struggled for a couple of hours trying to make start on a 1000 piece puzzle.  Maureen sat patiently by my side as I desperately searched for a starting point on my new venture.  This morning I have put all the pieces back in the box in preparation for its return to the library .

Yesterday afternoon, when I met Gary our social worker, I had some success in trying to find the missing pieces in my Carer Support Plan.   We explored two options for setting up regular respite.  Firstly, through a three-day break every month; with Maureen going into a Care Home.  Secondly, through a half day break  every other Wednesday supported by Carer Sits..

I’m optimistic that our outline plans from yesterday’s meeting will come to fruition.  I also think that a little bit of clock patience  might be a more inclusive way of spending these dark evenings.  All I need to make sure of is that we have a full pack of cards!

Dementia: Rolling With The Punches

General

Image result for Rolling With The Punches Picture

Maureen sought me out, in the spare room, at 2 am this morning to tell me that she ‘had been thinking that nobody liked her’.  She was particularly concerned that her offers to help were being rejected by all and sundry.  This was very different to my status early in the previous evening when I was clearly not her favourite person..

Maureen went out for a walk yesterday afternoon and when I tracked her down she refused to join me in the car, so I left her to it and returned home.  An hour later I toured the local area once again and there was no sign of her.  As I returned from another fruitless search I saw Maureen in the garden along with one of her cousins who had kindly returned her home in her car..

Once in the house Maureen berated me on all sorts of fronts.  I eventually realised that she thought I was her previous husband when she mentioned his sister.  The attack continued for some time concentrating on my ongoing attempts to ‘belittle her and prove she was stupid’.  Following a cup of tea, and a phone call from her son, she eventually calmed down and decided on an early night.

Her visit to see me in the spare room was a sad occasion as Maureen recounted stories of always feeling left out by most people and ignored by her close family.  She clearly had no memory of her eldest son visiting us on Monday or the earlier phone call from her other son.  Once again she was very sad that there was no contact from her parents, who have long passed from this world.

When you are a Care Partner for someone with dementia you have to get used to rolling with the punches and ignoring hurtful comments.  It is clear that Maureen would like more contact with her immediate family and I have suggested, once again, that a visit to Nottingham to see her brother and sister is long overdue.

Dementia: Person-Centred Respite

General

Image result for Person Centred Respite PictureThis morning I’ve arranged to call into Ashgrove Care Home to discuss their perspective on Maureen’s five days of residence.  I want to see how they felt she got on in her longest stay in residential care so far, and compare it with what she says, and I saw.  I can then   feed this into my discussions about future respite breaks when I meet our social worker tomorrow afternoon.

It is clearly difficult and more expensive to arrange home-based care for periods of respite.  However, this needs to be balanced against the impact on the individual.  Another alternative is to consider holidays together in supportive environments.  One thing is for sure: all Care Partners need adequate support and time off.  Why should such arrangements be anything other than person-centred?

 

Dementia: Seeking The Whole Picture

General

Image result for Looking At The whole picture pictures

Maureen woke early this morning wanting to go to the bathroom but afraid to leave her bed because there were birds in the room.  I am beginning to wonder if dreams play a part in her reality whenever she wakes after sleeping.  As she had been sleeping for long periods after the visit of her son I decided to encourage her to stay awake for a while before attempting more sleep.

I think there was something Freudian about my choice of music as we sat and as I sought The Eagles on YouTube.  As we looked back at some of our favourites from 40 years ago we discussed how life had changed in the last four decades. It was great to hear Maureen articulately expressing her opinions on how hectic life was for parents in 2016.  Anyone who was a party to such a discussion would struggle to believe that Maureen has dementia: such snapshots are very deceptive indeed.  This is one of my concerns about professional assessments.

When I meet our social worker on Thursday I am going to suggest that we seek a coordinated assessment of Maureen’s presentation.  We need to see how she is presenting when she is in Care Homes, on carer sits and home alone with me.  Capacity Assessments on one particular issue may  be required by the system but if we are to decide on her overall best interests something much more detailed is required. Perhaps a final word from The Eagles is helpful on this front:

 

Dementia : Feeling My Age

General

Image result for Feeling My Age Male Picture

This morning Maureen has been calling me ‘grandad’: being a Care Partner is obviously taking its toll.

She is continuing to look for ‘the little boy who keeps playing tricks on her’.  Apparently he is constantly stealing her clothes

Ian her eldst son is due to arrive shortly.

A visit to the dentist is pending at noon.

It will be interesting to see who she thinks I am in the evening after such a busy day.

Dementia: On Target? (Week 5)

General

Image result for On Target PictureOur target last week was quite simple: to enjoy being together again after Maureen’s stay in Ashgrove Care Home.  This week promises more of the old routine with Carer Sits, once gain, in place for the next seven days.

High on the Agenda this week has to be planning for further periods of respite.  Any Care Partner needs to know when they are going to have the next significant break from being on duty 24/7.  I really benefitted from my respite at the Buddhist Centre and need to plan such breaks on a regular basis.  I would also like to explore the possibilities of a Winter Sun holiday before the end of the year.

One of Maureen’s reactions from her stay at Ashgrove was to suggest that she would like to have a holiday.  Togetherness has always been a feature of our marriage;  it would be lovely if we could resume our visits to Portugal during the winter months and feel the warmth from a stay at Madyhamaka together. This is something I aim to reflect upon in the coming week.

Good news on the sleeping front: my novel approach is working.  I’m now on my second book – The Sound of Trumpets by John Mortimer.  When humming the Brahms Lullaby fails to do the trick, picking up a book is helping me to get back into a sleeping mode.

Dementia: All Singing and Dancing

General, Uncategorized

We often start the day with YouTube Maureen loves singing along to the songs her dad used to sing to her when she was a child.  This one is a particular favourite and a lovely way to start the day:

In the evenings I often become our resident D J and put some vinyl on the deck.  Last night Maureen was in exceptional form and took to the floor as you will see .

With dementia you can never predict what is going to happen next.  This morning Maureen has just summoned me because she is frightened because there is a large dog in the lounge and she is frightened by the beast.  She often reminds me that she witnessed one draw blood from your mother’s leg when she was a child.

I understand that those deeply held emotional memories are the last to fade when you have dementia.  Therefore, it isn’t surprising  that Maureen remembers me being ‘horrible to her for putting her in a Care Home last week’.  This could well be one of those emotional memories that will not fade as quickly as some would suggest!