Category Archives: Uncategorized

Dementia: Picking Up The Pieces

I found it really difficult to get back into the swing of things yesterday, after my day trip to Coventry.  It reminded me of the first day back on the shop floor of the car industry after a holiday.  I could almost ‘smell the suds as I put on my overalls’, after just a day away from being a Care Partner. Yesterday, it was coming back to the complexities of dementia, and the aftermath of my desertion: no suds to contend with but it still stank!

Early this morning the level of Maureen’s confusion hit me head on.  She made some enquiry about ‘this house’.   My response led her to say: ‘how could I have sold my house in Coventry?  I wouldn’t have known how to do it, and my son wouldn’t have allowed me to’.  Once again contact with her sons has added to her confusion: a visit form one on Monday and a long phone call from his brother yesterday.

Maureen is unable to change much about her presentation: dementia is in control for most of the time.  However, after a day away I had forgotten how draining and challenging my role as a Care Partner has become.  It is easy to ‘forgive’ my lovely wife: there is little she can do about her condition.  I can’t make the same excuses for her sons: they just ‘don’t get it’.  They ignore my advice and continue with interactions that add to Maureen’s confusion: it’s time to talk to them about the consequences of their interactions.  I think I will have a chat with my Admiral Nurse about this before she breaks up for Christmas.

 

 

Dementia:’Houston We Have A Problem’

There is no doubt it: ‘we do have a problem at the moment’, and the worrying thing is it may be more than a temporary one. It’s becoming abundantly clear that the times when Maureen is unclear who I am are becoming more frequent.  Unfortunately, that problem is going to take on an even greater magnitude tomorrow when I am on a day trip to Coventry. Therefore I need to hurriedly put one or two things in place to attempt to reduce the potential for further distress.

The real problem arrives when Maureen thinks I am her previous husband.  So I am going to concentrate today on putting even more things around that are ours, and remind her of the ‘good old days’.  Perhaps looking at our wedding photos, and sorting out one or two albums of old haunts might help.  I can also talk about and put on music that reminds her of the happy times we have spent together.  However, I’m not quite sure what I can do about her son’s visit while I’m away.

In many ways it is unfortunate that Ian is coming tomorrow.  Maureen often becomes more confused than ever after his visits: unsure who her husband is.  After my holiday in Portugal last year she became convinced that his dad was returning, rather than me.  As he stood with her at the railway station she looked a pitiful sight, almost unrecognisable, until she saw it was me coming off the platform.  On another occasion she summoned the police because she said ‘there was a stranger in the house’ – it was me!

The Clinical Psychologist from the Stroke Team warned me to be very careful once Maureen began to confuse me with her previous husband.  Being aware of the abusive nature of Maureen’s previous marriage she urged me to be very cautious about my behaviour.  Therefore, I’m now being very careful about when I make physical contact with Maureen.  How sad that in the present circumstances I have to check who Maureen thinks I am before can give her reassuring hug:  if I get it wrong all I will do is cause further upset.

Slow learners…

Kate Swaffer’s blog today reminds me what a long way we all have to go to sort out our way on this journey.

Kate Swaffer (she/her) Kaurna Country's avatar

Screen Shot 2015-12-07 at 10.10.18 amThis is a simple, succinct quote on who’s got the problem in caring for or communicating with people with dementia, and if this point was taken seriously, and considered fully in the dementia sector, 90% of the so-called ‘challenging behaviours’ we are so negatively and glibly labelled with would probably never surface…

If you can’t understand us, and don’t take the time to work out how to communicate with us (that is your job, not ours), then no wonder so many with dementia end up displaying frustration, anger and eventually apathy and depression. If you were not listened to, and no-one bothered to try to understand you, you’d do the same…

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Dementia:Musical Friday

As I messed up earlier with a 5 am posting I have decided on a little more today.  I have already used a little music therapy to relax myself this morning.  Someone Like You has been booming out from my Tablet and Smart T V: I am a recent convert to that fabulous woman.

I am going to see if music can help to ground Maureen today.  What I have in mind is to put on those tunes that she used to sing along to 50 years ago whilst doing her housework.  There is no doubt that this is usually a mood lifter.  If things go well I will put on South Pacific and she will sing with gusto: ‘I’m going to wash that man right out of my hair’.  That always makes her feel good: those who know her will ‘get the picture’.

My final plan in this musical journey is to put on some Festive Music.  I want to see if Christmas can be moved into her mind set.  I have a sneaking feeling that there are some very happy memories there that we might just tap into.  In all of this I will proceed with caution because as my cyber friend Kate Swaffer  says; ‘gently, genty catchee monkey’.  That must be the Aussie in you Kate: Maureen always says ‘slowly’!

Dementia: Preserving Independence

It is possible that I’m sailing close to the wind this morning by deliberately giving Maureen late notice that I am going to Coventry tomorrow.  However, after another difficult day on the clothes front, mentioning my trip yesterday would have been unhelpful.  Therefore, I will broach the subject with Maureen once Chloe, today’s carer arrives.  This will give Maureen an opportunity to chat about the amount of care she would like on Saturday.  Our social worker is on standby to fine tune the arrangements once Maureen has outlined the level of support she feels she needs.

My attempts to visit my family in Coventry have been frustrated on a number of previous occasions.  Maureen and I have sometimes had plans to go and then she has not felt up to travelling.  A couple of weeks ago I postponed a visit as I didn’t think it fair to leave Maureen after a rather difficult few days. On other occasions carers have not been available to stay with Maureen in my absence.

Carers are available to stay with Maureen for the whole time I’m away on Saturday. What we are all trying to preserve is Maureen’s independence, and at the same time ensure her safety.  This is not a simple path to tread, as Maureen’s presentation can change so quickly.  Therefore,  late notice of my plans for an away day seem the most pragmatic solution to a challenging situation for us all.

Dementia: Good Vibrations and Neuroplasticity

I think there were lots of good things about yesterday, alongside my luck running in 

Maureen and I had a normal sort of day for any married couple.  I didn’t ‘hop off’ as soon as Gemma arrived, so we had breakfast together and then carried out some basic household tasks.  When we work alongside each other the ‘old team’ is back on the pitch, and things run smoothly.  I generally spot when Maureen needs prompting and make the necessary supportive moves.

Whilst I was preparing lunch Maureen and Gemma got on like a house on fire.  I could here them chatting away as I made a winter warming soup.   When Gemma left Maureen said she liked Gemma- always a bonus with any carer!

My lunch time soup went down a bomb and I got high praise from my regular booking.  We always have fun around meal times as Maureen scores my creations.  The afternoon was difficult for the Nottingham Forrest supporter and she sat out my celebrations of the Sky Blues slamming Gillingham 4-1.

When Maureen is left to her own devices she tends to tidy up all sorts of things.  Sometimes she packs to go home and fills the washing basket full of precious items.  On other occasions she moves stuff around.  As I listened to the match she was in the bedroom and announced later that she had been tidying up.

As I celebrated the Sky Blues moving to the top of the table Maureen joined in with the high spirits.  She sang and danced to Joe Brown giving it his all on our Cd player.  When the moment was right we practised a routine or two from our dancing classes: being careful of course not to burn the evening creations.  My regular customer had requested omlette and chips – so my moves took on a new dimension.  I don’t think I would have got a ‘Ten from Len’ as we strayed into the slow fox-trot!

Following our evening meal I suddenly realised that Maureen had been on the go all day.  This was the first time for ages that she hadn’t had a nap or two in the day.  I joined her in bed shortly after nine at the end of a good day all round.

Who knows what today will bring?  All we can strive for is more Good Vibrations.  

Well we are off to a good start this morning with Maureen down at 9 am, making a further cup of tea.  It’s bright but very cold outside.  Maureen is not keen on driving south to see relatives, so we will stay local today.

If the going is favourable I hope we are able to walk to the local shops.  I am pretty sure Maureen can remember the way by now, and it won’t be long before she has the confidence to make the trip alone.  This will be such progress after her circuitous walks around the local streets, and eventually finding her way back home.   Maureen continues to demonstrate that she still has the capacity to learn.  It just takes a little longer following stroke and patience is vital when your goal is neuroplasticity

 

Dementia: Super Saturday

 

There is only one way of summing up yesterday: ‘Super Saturday’.  They say your luck runs in threes and yesterday it did.

Gemma our carer arrived on the dot at 10 am and provided superb support throughout her stay.  When you consider it was only the second time she had been here her performance could only be described as outstanding. Following a brief chat in our dining room she blended in as if she had been part of the furniture and fittings for ages.

Gemma is extremely intuitive and realised that Maureen was puzzled by a new kid on the block.  She therefore played a good card by offering to ‘pop to the shops’.  On her return she played another ace by ironing some bedding.  Then she slipped into the lounge to have a cuppa and chat with Maureen.  I am pleased to welcome Gemma into our support team.

With Gemma in the house I managed to scan the Internet for more resources on dementia and discovered Improving Dementia Education and Awareness (IDEA)  at Nottingham University.  What could be better than somewhere that is close by , at a University where I have been a student, and located in Maureens birthplace?

Later in the day things got even better.  As an avid Coventry City supporter I listen to matches live on Sky Blue Player.  Yesterday we beat Gillingham 4-1 .  It isn’t very often that I wake up on Sunday morning when the Sky Blues are top of the league.

The only dampner on this morning is that I have been woken up early once again by leg pain.  I have to start looking after myself a little more.  Those morning routines of Tai Chi and meditation beckon!

 

 

 

Dementia: I Need Feedback!

One of the things I need in my role as Care Partner  is  feedback on how I am doing.   I get it daily from Maureen, as her presentation is generally a reaction to my performance.  When I  get it right peace and love abounds.   All  sorts of chaos ensues when I get it wrong.  However, Maureen’s feedback is subjective, and professional staff also need to help me review my performance.

When I met with my Admiral Nurse yesterday we agreed that keeping a log of our daily activities would be useful starting point.  This can be combined with the recordings of carers, and placed alongside the observations of our social worker.  When all of this information has been brought together it will provide a platform for planning the way ahead.

As we have been discharged from the Memory Service we need to have a coordinated approach to supporting Maureen.  I need to be able to draw on the expertise of professional staff  to help me reflect on my role: to ensure I remain a supportive, and well informed, Care Partner!

 

 

A manifesto for people centred care

This is my third blog of the day and by far the most important. I couldn’t put it any clearer than George’s address to the UK Dementia Congress: people centred care is the only way forward.

georgerook51's avatargeorge rook

This is my speech to the National Voices Assembly yesterday, in the fabulous architectural gem, the Great Hall, Westminster…

Good afternoon.

What a privilege it is to be invited to speak here.

I came to a conference here last year, in the main hall, and was really looking forward to spending in that great arena, with such wonderful architecture…

Well, it’s a lesson. It’s not the architecture or the building that matters, it’s the people inside. It’s the interactions, the networking, the sharing…the people…You

I want to start a revolution. Right here, right now.

The crisis in healthcare and social care, the result of, let’s be clear, political decisions about funding, means we absolutely have to change.

We have an NHS that provides mostly crisis care, interventions when people become acutely ill, and which cannot survive much longer in the form we know.

We have social care that provides ever…

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Dementia: Many Hands Make Light Work

Listening and thinking has to be a priority for a day or two following recent developments. Maureen believed she was back in Nottingham for quite a period of time yesterday evening.  Then this morning following conversations about a trip to Coventry Maureen is wondering: ‘why I brought her here?’  There are also the constant grief related issues about her parents or two children who have passed away.

The simple plan today is to potter around the house and garden.  We will be trying to catch up on one or two outstanding tasks.  This will give us a chance to think about where we go next on this journey.

Fortunately I am well placed in the next few days to share my thinking on a way forward.  At some time today I may well wander around the corner to have a chat with Yvonna our helpful chemist.  Tomorrow I am meeting with Mel, my Admiral Nurse.  Sue our social worker is back on the scene next week and a chat with her is pending.  So many hands should help this Care Partner to continue with good work.