Dementia: Rapid Response

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Maureen is feeling out of sorts this morning: concerned about the impact of her fall and feeling dizzy.  Within ten minutes of contacting Clee Medical Centre appointments have been made for later in the day.  I’m hoping I’ll be able to get her there this time and there is no repeat of Friday when Maureen went to ground rather than attend a medical appointment.

When we ran off to the seaside together 16 years ago we had no idea of the quality of services here.  I have recounted on several occasions the quality of support I get as a carer and Maureen positive experiences from all quarters.  Cleethorpes may be out of the way and relatives are a long way off but there is a lot to be said for living in this area.  It would be foolish of us to consider moving from an area which looks after us so well.

 

Dementia: Ten Days Respite Is On The Way

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Ten days respite is on the way in a week’s time.  When Chloe our regular ‘sitter’ takes  annual leave we will ask the Care Agency not to send a replacement.  This will give us a further opportunity to reclaim our home and lives.  It will also give us a chance to see how we cope under our own steam

It was good to have Chloe back on the scene yesterday and catch up on her latest news: Maureen really enjoys having an opportunity to listen to someone else rather than me. Although yesterday was no different than normal with Maureen asserting that she would sooner be left by herself if I need to pop out for the odd hour.  What she forgets is that the bonus of having Chloe and Gail here is they are great at helping us keep our home in order. They are also well versed in supporting clients with dementia but it is possible that they could learn to be a little more enabling.

We popped over to ‘Tickerty Boo’ in the afternoon to buy some batteries for our digital camera.  Maureen used to enjoy taking photos and I’m hoping to encourage her to become a happy snapper again.  I will need to be patient as her eye sight and apprehension about new technology may well be barriers to this pursuit.

On our way home from our shopping expedition I nudged us in the direction of the lady at number 26 Fairway Court.  I have no idea what her name is but we have chatted to her on a few occasions.   Maureen had a ball in the company of this lovely lady who held her hand as she showed us around her garden. We must have spent half an hour with the residents at number 26 as Bert also came out to chat with Maureen for a short while.  It’s amazing how those who have troubles of their own are so generous with their time.  Bert had recently narrowly avoided a stroke and had to have an operation to disperse a blood clot behind his eye.

Late evening Maureen became very confused once again expecting my eldest daughter Lisa and her family to stay here.  She told me she had spent a long time preparing the spare bedroom for them to sleep in.  When I checked I could see no evidence of her endeavours.

I have been up very early this morning searching for Maureen’s wedding ring.  She told me she had taken it off yesterday and put it in a drawer because it was too loose.  I must have spent a couple of hours this morning looking in the obvious places without any luck: half an hour later I saw her putting it back on her finger having retrieved it from under her pillow where she had left it.  I just wonder if the missing engagement was left in the same place and is now under the bed: we’ll be investigating later

It’s a lovely morning in Cleethorpes and that always gets us off to a positive start on our journey.

 

Dementia: Looking Back: Looking Ahead (Week 23)

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Maureen came back in a big way yesterday and confined Mrs Dementia to the dustbin until it was time to go to bed.  I wasn’t at all surprised that I was sent to the Boys Dorm at 1o.30 pm as she would have been exhausted after a very busy day.  Once we were upstairs she once again asked where the girls were so I took my cue and hot- footed it to the spare room.  This morning I heard Maureen crying out as she asked Denise, her daughter who has passed, if it was time to get up.  A quick cuddle and a cuppa did the trick and she was safely in the land of nod.

Today will be the first day for almost a week that Chloe has been on duty.  I have deliberately kept carers at bay so that we could get our home back for a while.  It’s not surprising that Maureen thinks it’s a Care Home with ‘ladies’ as she calls them here every weekday.

Some of my friends on Talking Point  have often questioned my judgement: quite rightly on occasions.  Certain members of my family have raised their eyebrows at my approach: one even suggesting ‘I haven’t got a clue’.  So take breath before you read this: we are now curtailing the amount of carer sits by terminating the presence of carers on Tuesday’s and Thursday’s.  Yes: we are reducing Local Authority funded carer sits by 6 hours a week.

Our Dementia Specialist Social Worker: Flexible Sue as I now  call her fully understands our strategy and she is never one whose sole concern is to manage budgets.  We have both finally understood Maureen’s plea to ‘want to get her home and  life back’.   It is possible that carer sits may be reduced even further as Maureen’s recovery from stroke continues.

Flexible Sue has kindly offered to support me as I try to ensure that Person Centred Care is applied across the board.  The Home Treatment Team provide daily mentorship as I try to get my own house in order.  They think my plan to continue an assessment of Maureen’s capabilities is sound and like my ideas about including carers in this process.  Once we have spent a week or so taking a look at Maureen in action I hope we can arrive at a consensus on the way forward.

The photo below puts some ‘meat in the sandwich’ of my thinking.  Actually it was cheese but no matter:

Maureen offered to make me a cheese sandwich yesterday afternoon.  I fell asleep as she had been in the kitchen rather a long time.  When I caught up with her it was clear she had struggled.  There were three sandwiches scattered around the kitchen I found the one above in the fridge. She had done her best: no harm had been done and nothing wasted – in fact plenty for another day.  Nevertheless, there had been purpose in her life for the last half an hour or so.  Our focus needs to be in helping Maureen to find more purpose than being tied to the kitchen sink.  I have every confidence that with the support I have at my disposal we are up for it!

 

Dementia: A Walk Down Memory Lane

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I took Maureen a walk down Memory Lane this morning.   Her parents came to Cleethorpes when she was still at Primary School so her father could benefit from the sea air. They only stayed for a couple of years because Jack couldn’t find suitable employment.  Fortunately, he managed to get his job back as a metal polisher at the Raleigh so they went back to Nottingham.  This meant leaving lots of family members who had joined them on the East Coast behind.

One of the reasons we moved to Cleethorpes was because we often came up here to visit Maureen’s Aunties and Uncles.  On one visit I was so taken with the place that I said ‘I could live here’: the rest is history.

The photos below follow us on this morning’s walk down Memory Lane:

 

Maureen outside her grandparents former Guest House: previously The Richmond Hotel.

Maureen with Roy the Head Gardener at Kew Road, where she lived as a child.

 

Maureen outside her Primary School.

The Airman is a reminder of my dad’s time as a Rear Gunner; it’s just across the road from the RAF Club where we spent happy times together.

I will print these photos to remind us both of a very enjoyable Father’s Day

 

 

Dementia: Two Good Men

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I couldn’t let today pass without mentioning two good men.  Maureen and I both had fathers who were called Jack.  When I worked at the Morris, later to become British Leyland, I was always known as Jack’s son even though his name was John.  Maureen’s sister is still known as Union Jack’s lass whenever she bumps into those men who knew her of her dad’s activities in his days at the Raleigh.

I never had the pleasure of meeting Maureen’s dad as he had passed before we met. However from the stories she has told me he was a wonderful father just like mine.  The other thing they had in common is they were both active trade unionists.

Both of our fathers didn’t mince their words and were outspoken in their beliefs.  We are both proud to have had fathers who had no truck with liberal political correctness. 

Happy fathers’ day to two Jacks: we try to be chips off the old block.

I’m wondering if a change of scene would help us both on this sunny morning here in Cleethorpes.  Maureen has slept a lot in the last couple of days and hardly been out the door for more than the odd half an hour.  As you will see from my Niceness page I needed support yesterday to try to fathom what was going on here.

The warmer weather gives me a chance to see if Maureen will consider a day out.  As it is father’s day she might want to venture as far as Nottingham to see her brother and sister. Coventry might be a bridge too far so it’s unlikely I’ll be able to visit some familiar haunts to remind me of my dad.

We are fortunate that we only need to venture into Cleethorpes to reminisce about our respective fathers: Maureen lived here as a child for a couple of years and my dad came to see us here, along with my mum, on several occasions.  So a walk on the Prom would be nice and if we called in at Kew Road, where Maureen used to live, and the RAF Club to remind us of the Rear Gunner, we would both enjoy fond memories of two good men.

Dear me I almost forgot this which I have added an hour after my intial post:

 

Dementia: I’m Frightened: I Don’t Know What’s Going On’

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It’s now 4 pm and I’ve just joined Maureen sitting on the edge of the bed.  As she sits there looking bewildered she says: I’m frightened: I don’t know what is going on’.  Little wonder that she has stayed in bed all day: too frightened to get up.  I reassure her that I will always be beside her and help her to come round after a sleep.  What else can I do?

I’m hoping I can entice Maureen into the garden to help me see if my first crop of potatoes is reading for digging up.  Once out in the fresh air my outdoor wife may be able to leave her concerns in the coolness of the breeze: even if it is momentary respite from this dreadful condition it will be worth it. Now where is that other shoe that she will be seeking in as soon as she finishes eating her breakfast?

Dementia: Manufacturing Family Contact

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Maureen was determined not to see her G P yesterday morning.  She tried every delaying tactic in the book even climbing into a single bed in the box room.  I managed to let Dr Munjal know what was going on and he said: ‘you know I will see her whenever you can get her here’.  Such a wonderful G P full of empathy and so supportive to us.

Maureen’s question of ‘what about me’ has become even more valid: in the four days since her accident she has only had one phone call to check on her well-being.  So yesterday I took action to manufacture some family contact.

Just before a late lunch I raised Maeve on the phone and Maureen chatted to her favourite granddaughter for a while.  That really lifted her spirits; particularly that she was consoling Maeve for  also ‘ being in the wars’ from dropping a bowling ball on her foot the night before.  At seventeen Maeve handles Maureen’s dementia well even when she is asking about her mother who is no longer with us.

I opened a second front in the afternoon by summoning Aunty Clarice to sit with Maureen while I went out to buy my daughter a late birthday card.  On my return I invited us to have tea at Clarice’s and we had a great time.  When those tw0 get together it’s a laugh a minute and last night was no exception.  It helps that Clarice knows dementia well after nursing her recently departed husband for 20 years with Alzheimer’s.

We returned home around 9 pm and Maureen fell asleep on the sofa shortly afterwards.    I gave up trying to persuade Maureen to go at midnight and left her to it on the sofa.

The Baby Monitor woke me shortly after 1pm with Maureen on the move.  She was very confused saying she was ‘going to leave this Mad House as soon as possible’.  I vacated the marital bed to leave her alone in the safety of the ‘Girls Dorm’.  An hour or so later she was on the move again very frightened there was n0-one else here and she welcomed my suggestion to join her in bed.

Maureen woke this morning and asked me if she would ever get better sharing her concerns that ‘things aint what they used to be’.  As always I tried to reassure her that she continues to make good progress in her recovery from stroke.  She has decided to go back to sleep after a frustrating half an hour trying to find underwear that was comfortable: it’s going to be one of those days.  Perhaps a shopping mission might be on the cards.

There is no doubt that Maureen was lifted by contact with family yesterday.  I’m hoping that the pressure is off for those who have had a busy working week and they will be on the phone today to see how Maureen’s injuries are progressing.

 

Dementia: Person Centred Care In Action

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I have sent the following E Mail to relevant professionals this morning:

‘Hi Sue, Mel and Gilly

Person Centred Care

Who is able mentor me on helping me to make this happen see today’s Blog post https://memoryissues.wordpress.com/
Kind regards
Paul’
I have also received a call from the Home Treatment Team asking me how Maureen is.  You can’t get more Person Centred than the HTT.  They will continue to monitor how things are going.
Maureen is currently eating her breakfast prior to an appointement with her G P.  She slept most of yesterday and Dr Munjal wants to check her out following her fall on Monday.
Things are moving in a positive direction.

Dementia: Person Centred Thinking

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I have been thinking for a while how we need to change the direction of our journey so Maureen is being enabled rather than looked after and kept safe.  This article from one of my Linkedin Networks is just what I have been looking for:

‘Simple changes make significant change for the person living with dementia.

One Page Profiles (1PP) are one of the Person Centred thinking tools that support the transition from people living with dementia being passive recipients of care to their being recognised as equal value members of society. They also herald a new progression, as services aspire to move beyond personhood towards citizenhood.

SCIE have a fabulous online tool that provides information, videos with Helen Sanderson and Michael Smull and a helpful step by step guide to completing you 1PP.

The 1PP is the visual outcome of semi-scripted meetings that are held with the person, their families and carers. But the real powerhouse of change and the arena for accomplishing that change is not the outcomes as much as the process undertaken to create that profile. The meetings offer a unique opportunity for relationships to deepen and flourish, with paid and family carers working in collaboration with the person to share understanding , skills and knowledge that might enhance the lived experience for the everyone involved.

One important difference between traditional person centred care and personalisation through 1PP is the inclusion of the experiences of the formal and informal carers. Not only do we seek to understand the experience of the person living with dementia, but we show equal respect to the qualities, aspirations and needs of members of too. In Dementia Reconsidered Kitwood reminded us that carers are people too. This sentiment seems not always to be present in all modern paid care roles with their minimal wages and maximum public scrutiny.

The 1PP process generates opportunity for real time problems solving that puts into action the previous rhetoric of the social model of disability. In short they offer a chance to develop solutions in a multi-focused forum to situations that cause challenge and concern to the person and those that support them.

I facilitated a meeting on one occasion for a gentleman who had lived in the care setting for just a few months. However, in all of that time the staff had been unable to successfully offer him any support to meet his personal care needs. Whenever they tried, no matter who amongst the staff, he would become increasing distressed. This distress was beginning to cast a shadow across all of his day. The initial remedy to this was that is daughter in law provided this support, much as she had at home for several years before he came to live in the home. At the meeting she said that, whilst she loved him dearly, she was hoping that she could start to withdraw this level of support so that she could visit and just enjoy his company, rather that feel responsible for his care.

We talked about how she was successful in supporting him and what she might do differently to the staff. She said that she didn’t know, but perhaps they sang the wrong songs. They sang songs together.

It is as simple as that.

They sang.

We asked what they sang together, and she said anything with bounce, Daisy Daisy was a good one, but be prepared to sing it over and over. The staff were skeptical at first, thinking that it was too simple, but as a team agreed to give it this a try. It worked immediately.

From that day on staff have been able to support this gentleman with all of his personal care needs. With staff providing this support his daughter in law has felt able to draw closer to him as he time is spent providing a deeper level of emotional support.

To achieve outstanding the CQC asks providers for evidence of a strong, visible person-centred culture where people are truly respected and valued as individuals and where they are empowered as partners in their care. The timely use of Dementia Care Mapping™ and Person Centred Thinking™ tools go some considerable way to providing that evidence.

Clover Care Consultants is able to support care teams and providers to evidence their practice and build on their successes’.

 Postscipt: I realise that this will take some working through but with my experience from a  Masters in Lifelong Learning and the Managing Change we’ve got a sporting chance

 

 

Dementia: You Can’t Kill The Spirit

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Maureen is rather bruised at the moment but her spirit is still remarkable.  She was struggling on Tuesday after her late night visit to A&E at Grimsby Hospital and I needed to the support of the Home Treatment Team to help me pull through.  Yesterday Maureen was back at full throttle excelling as we worked through our busy day.

Our conversations early doors had been about living in this house: a place that has probably never felt like home.  We are both considering whether it is time to call time on 16 years on ‘holiday’ in Cleethorpes.  Maureen’s response has been exciting evidence that ‘she is still the full shilling’: urging caution and taking our time.

Melissa from the HTT called mid-morning and once again Maureen was in good form.  She had wondered if the HTT were checking up if I had caused the bruising on her face and was anxious to leave them in no doubt that I was not abusing her.  Maureen really enjoyed the stimulation of Melissa’s visit: another excellent professional from the HTT.

Maureen came into her own as we dealt with the raised paving slab that had caused her accident.  In the Council Offices and the Solicitors she played her part in processing a potential negligence claim.

We both fell into bed around 9.30 exhausted after a long day.  I have been up early this morning sticking to my plan to improve my sleep pattern.

Yesterday convinces me we are on the right track here.  Thanks to my dear friend Kate Swaffer we are converts to the idea of neuroplasticity.  I am really grateful to Dominique Klotz for her introduction to Kate.  Perhaps one day Maureen and I might make it to Australia to thank our supportive friends in that neck of the woods.  How ironic that they have both been in the UK in the last week and we couldn’t get to meet them!

There is lots of evidence that Maureen continues to recover from stroke.  What we will never know is if we can minimise the consequences of further vascular damage:  I reckon with the team of people who are supporting us we can give it a run for its money.