I am not functioning well at the moment as there are too many bases to cover as Maureen’s dementia continues to progress.  It is no longer sensible to travel to see family in Coventry tomorrow: The prospect of 8 hours on public transport is daunting, even if the heat wave lets up on us, and driving down would be dangerous

Sleep deprivation is now a constant in my life with Maureen refusing to come to bed again last night: claiming she hasn’t got a bedroom here.  An hour later she woke calling for her mother or myself because she was frightened about being alone downstairs on the sofa. She has woken several times in the night worrying about one thing or another as I lay beside her.  Her current concern is that there is no-one else here to tell us what to do in the morning

There is little doubt that the current heatwave in Costa del Cleethorpes is adding to Maureen’s confusion.  I’m struggling to cope myself in these extreme temperatures so goodness knows what it is like for my wife.  I had to resort to some emergency measures yesterday afternoon with an oscillating fan and bowls of cold water for her feet.  I’m thankful for the hints on the Unforgettable Site to help me support Maureen during this heatwave.

However I’m not kidding myself that I can blame Maureen’s presentation on the heatwave.  She has been struggling to find her way around our house for quite some time. Her contribution to household tasks is now minimal; often counterproductive leading to more work on my behalf.  This downward spiral shows no sign of reaching a plateau and I need eyes in the back of my head to keep her safe.  Yesterday I had to chaperone her back home several times as she has strolled off down the road in odd shoes carrying all sorts of gear.  Her walkabouts often take her into next doors front garden and trying to find a way into their house.

Maureen is sleeping for considerable periods during the day.  She frequently complains that she is tired and her naps can last for a couple of hours.  When she wakes another day has passed in her reality and she is expects breakfast.  When she is resting this is an opportunity to catch up on something that was difficult to do while she was awake but I continue to be advised that sleeping during the day is not the solution to my irregular sleep pattern.

 Unless I can find a way of getting more sleep I fear I’m going to keel over and Maureen’s care will be taken out of my hands.  Therefore my meeting with my Admiral Nurse this morning and our social worker on Monday could not have come at a better time.  I am also scheduled to meet Paul Martin my counsellor a week today and a consultation with my G P will not go amiss: something has to change otherwise I will not be able to care for Maureen in her own home for much longer.

David Bowie had something interesting to say on the subject of ‘Changes’:

What else would I play for Maureen in the morning?

I will be leaving for the Madyamaka Buddhist Meditation Centre in Pocklington for a few days respite at 10 am.   I am extremely grateful to those people have worked very hard, at short notice, to make it possible for me to have a much needed break.

It is possible that Maureen’s current reality will make getting away relatively straightforward. As we have chatted this morning she has been addressing me as a member of staff in her ‘Care Home’.  I’m hoping that I will be able to slip away for a few days break without any upset: always better to look on the bright side with dementia.

How fortunate we are to live in North East Lincolnshire where services as so well organised to support Care Partners and those with dementia.  I have just had a call from Rapid Responders to confirm that two team members will be out by lunch-time to make an assessment of our situation.  I was reassured to hear that one of them will be a nurse as Maureen is now feeling unwell and is sleeping on the sofa.

When we decided to move to Cleethorpes many questioned our judgement to uproot from Coventry.  From what I hear from friends back in the land of ‘The Sky Blues’ we are far better off living out in the sticks with a Local Authority geared up to looking after carers and their loved ones.  

I could not have asked for more appropriate support than I received yesterday.  When Gail, our carer, arrived she was so shocked by Maureen’s presentation that she advised me to get her ‘checked out’.  She hadn’t seen Maureen for a couple of weeks and was rather taken aback by this confused woman wandering around our front drive incoherent and looking lost.

My early morning phone call to the Home Treatment Team led to Karen a Mental Health Nurse arriving late afternoon.  Maureen was asleep when Karen arrived and we had a helpful chat until Maureen wandered into the kitchen half-awake from dozing on the sofa.  It was reassuring to hear Karen say that ‘we wouldn’t advise doing anything different’.  She also gave me some helpful coaching on how to deal with some of the issues that Maureen was raising: advising that distraction has its limitations and can lead to frustration when the issues that are raised are not adequately addressed.

Maureen clearly enjoyed Karen being here and once she had woken up was in good form. I listened intently as Karen confirmed her role not shirking the need to deal with sensitive issues of mental health and memory issues.  I’m confident that ‘Sitting next to Karen’ will increase my effectiveness as a Care Partner.

Flexible Sue, our social worker, is due mid-morning for one of her regular visits.  We caught up on Tuesday and she is scheduling a further Cares Assessment as soon as she finds space in her diary.

Maureen is singing this morning and there is no doubt that phone contact with one of her sons yesterday has really helped her mood.  The sun is shining here this morning so on we go with another lovely day pending in Costa del Cleethorpes.  

Maureen was reluctant to come to be again last night.  At 10.30 I decided to leave her to it and made my way to the spare bedroom.  She came upstairs at 11.30 and I joined her in the marital bed – an hour later she decided to return to the sofa so I went back to the spare bedroom where the receiver of the baby monitor resides.

Around 2.30 am I could hear a lot of activity downstairs and went down to investigate.  I whistled (my call sign) as I tentatively opened the door to the lounge to find my smiling wife on her feet.  As I greeted her I mentioned how good it was to see her and noticed that she had her PJ bottoms over one of her favourite pairs of trousers.

We have just spent the most enjoyable couple of hours together.  She is 3 -2 up on the ‘Sock Hunt’ with those in pairs waiting for a rinse later in the morning.  Despite my best efforts I cannot make any impression on her lead.

Our conversation around our struggle to find ‘fick socks’ has been light hearted and really positive.  Maureen has mentioned several times how helpful the Ladies (our carers) are: a really positive development compared with the norm.  We have decided that Gail will return to her seamstress role this morning; possibly altering some of Maureen’s summer-wear in anticipation of warmer weather.  As the car is laid up for a while (on the advice of yesterday’s advice from my Counsellor) Chloe will be our ‘Shopper Lady’ tomorrow and I have encouraged Maureen to start making a list of what we need.

We had a lovely surprise yesterday as Lisa sent us a video clip of Mala playing Eidleweiss on her flute.  I will transfer the clip on to my computer today so Maureen can see how well Mala plays one of her favourites from The Sound of Music.  Maureen is spoiled for choice with her response she is either going to send a song or a post card in response to this act of kindness. The sad thing is that Maureen has forgotten that my eldest daughter and her family were here on Friday but she is keen to visit Lisa on her birthday in a week’s time.

There is no doubt that Maureen is responding well to the new regime here.  Yesterday afternoon she show real joy by initiating a dance in the garden.  I’m so fortunate to have expertise at hand to coach me on her presentation.  Amazing Susan (pictured right) and Sue our social worker deserve real credit for encouraging me to focus on potential rather than a safety-first approach to Maureen’s presentation.  I will EMail Sue our social worker this morning and thank her for holding my hand on Tuesday as Maureen went looking for the children who had been her car.  All I can do for Ms Macaulay (in the USA) is acknowledge she really is Amazing Susan and that Teepa Snow would be proud of one of her disciples.

As I finish this post I have just had to deal with an attack from ‘Mrs Dementia’ who has accused me of evading her question about ‘where have they all gone’.  Maureen is frequently troubled about being left here when the others have gone out.  It’s now 6 am and Maureen is refusing to speak to me and has walked away as I tried to use physical contact to help her feel secure.  Ten minutes later and she has taken to the sofa: sleeping it of usually banishes Mrs Dementia for a while.

Another day beckons on our journey with many twists and turns likely today.  How fortunate I am that there is always all sorts of expertise at hand -some of it amazing – to help me find my own way of being a supportive Care Partner.

Silly Mistake

This post is later than normal this morning because I didn’t take the Baby Monitor with me when I was chatting to my next door neighbour.  My misjudgement caused Maureen utter distress as she thought she had been locked in and left alone.  It is possible that I will need a more sophisticated model that enables communication when I am not in sight.  Her presentation is changing so rapidly at the moment that I need to continually evaluate whether our set up is supportive of causing unnecessary distress.  I also need to keep the Baby Monitor receiver within ear shot whenever I’m out of sight and she is resting on the sofa!

I met with Mel my Admiral Nurse and a member of the Home Treatment Team yesterday morning.  After the meeting I said how helpful is was that Mel used to work within the HTT and she said ‘I’ve been around a bit’.  Her experience has been vital in helping us to get back within the system: rather than remaining discharged because of Maureen’s diagnosis of mixed dementia.

One salient point from our meeting was when Mel said ‘there is a trigger for everything it’s not just a question of Maureen having dementia’.  I find her comments reassuring and confirmation of the approach of the Home Treatment Team.  Therefore, I felt comfortable making clear my expectations of the HTT.

I outlined my concerns about reaching for the prescription pad, highlighting the known dangers of antipsychotic medication .  I placed my cards firmly on the table seeking an appraisal of Maureen’s presentation and the development of a strategy that would lead to us finding a way through this challenging period in our lives.

When the HTT had a brief involvement with us in the past I was pleased to hear that they have a biopsychosocial approach to dementia.  We are so lucky that we will be working with like- minded folk as we travel on this challenging journey.

Just in case you didn’t know Admiral Nurses work for Dementia U K and they are currently campaigning for funding to recruit more.  I would not have coped without the advice and support I have received from Admiral Nurses in this area.