Category Archives: General

Dementia: Manufacturing Family Contact

General

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

General

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.

 

Dementia: Respite With A Difference

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Maureen is going into Respite: she is having a break from carers coming  into our house.  We are going to see how things go by getting our home back: one of her constant pleas; along with getting her life back.

We are going to do things as a couple again rather than me scarpering to do my own thing as soon as carers walk through the door. 

Maureen has been a revelation today boosted by contact from family and her husband at last understanding what she wants.  Tomorrow’s blog will paint a very positive picture of what we have been doing today.  I must dash to stop her washing up and putting her hands in water as they haven’t healed since that fall on Monday.

Dementia: ‘What About Me?

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Dementia is giving Maureen an opportunity to ask ‘what about me?’  She is posing that question to me day after day.  What she is asserting is that in my hour of need she has always been there for me: totally devoted to helping me to recover from periods of being unwell.

Maureen is also asking the same questions of her family.  She says: ‘they don’t know where I am; have never been here; I can’t remember what some of them they look like’.  She is saying ‘I raised you and where are you when I need you’.

We are fortunate that we live in an area where the biomedical model for dealing with dementia has been consigned to the history books.  I witnessed first-hand the person centred model that is used here after I had summoned help from the Home Treatment team yesterday.  Amanda was walking down the road holding Maureen’s hand trying to console her.  Her colleague was talking to me at the end of our drive making the point that ‘we have to treat the person not the condition.  She is part of a team who see Maureen’s environment as key in her presentation.

Maureen gave me a wonderful hug at the end of a trying day for her: once again she was pleased that I was listening to her concerns.  Cleethorpes is a place of great sadness for her – our holiday romance at the sea side may need to be drawn to a close.  She sits on a sofa where her daughter fell into her arms and told her devastating news that her life was drawing to a close.  Her view as she thinks of Denise is through the ‘bars of her prison cell’ looking at Pat’s bungalow: a picture of sadness and loneliness.  She told me yesterday that she longs to walk down the familiar streets of Bell Green where we used to live in Coventry.

Maureen is not ‘Sundowning’ she is lonely and disappointed by the behaviour of others: including me.  She wants us close by in her hour of need: if I’m not in sight she is frightened.

Those who love Maureen can no longer afford to hide behind dementia being a progressive condition.  I am pleased that my wife has the courage to ask ‘what about me’ and she is already aware of my response.  Unfortunately, I cannot do this alone and other people need to step up to the plate and tell Maureen when they will be with her in her hour of need.

Postscript:  A brief note of thanks to all family members who sent messages of support yesterday: from the Midlands, Royal Albert Hall and North bound trains.  Things are hectic here at the moment all I can do is update you on my Blog.

 

Dementia: Cometh The Hour Cometh The Woman

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Four women gave us excellent support yesterday. Melissa from the Home Treatment Team met me and made practical suggestions to improve our lives. Sue our Social Worker provided sound support on the phone. Mel my Admiral Nurse kept herself in the loop throughout the day with contact via E Mail.  Kate my next door neighbour taxied us to the hospital at 10pm with Maureen streaming with blood after a fall.

Melissa made two salient points in response to my concerns about our situation.  Firstly, we need a Carers Log of Maureen’s presentation to monitor the progression of her condition.  Secondly, I need to address sleep deprivation as it put my mental health at risk. The immediate steps I am taking will be outlined on my Sorting Sleep page shortly.

I have to tread carefully over the log as any management of change is problematic.  How fortunate that my Masters’ Degree is in ‘Lifelong Learning and the Management of Change’. I know that  Tom Schuller  occasionally pops into my Blog and will continue to keep a watchful eye on his student.

Maureen’s car was out of action yesterday with a flat battery and I wouldn’t have been able to meet Melissa without Mike our next door neighbours help.   Kate, his wife, came to our rescue after Maureen had tripped on some uneven pavement.

The staff at Grimsby Hospital excelled in their approach to Maureen’s treatment. She was treated with dignity and respect by all.  Apparently she has friable skin so sutures could not be used.  The receptionist in A and E summoned a taxi for us around midnight and we were home shortly afterwards.

I have just taken Maureen her first cup of tea of the morning and she is bruised but far from broken by her fall.  She is concerned that I won’t be able to go to work today: how fortunate that my battles to keep order in the classroom, as a Supply Teacher, were concluded several years ago.

 

Dementia: Looking Back: Looking Ahead (Week 22)

General,

Any perusal of this Blog will lead the reader to conclude the Maureen’s presentation is changing as is her personality: no surprise there dementia is a progressive condition.   Routine and consistency is the very thing she needs at the moment and it is conspicuous by its absence.  My suggestions on how we might improve things are listed below as bullet points:

  • Carers need to be consistent in their approach.
  • Carers need to meet to review their input and Maureen’s presentation.
  • I need to improve my sleep pattern.
  • We need to address the shortcomings of the biomedical model.
  • Family members need to increase their level of phone contact.
  • Family members need to schedule frequent visits.
  • My Blog becomes the vehicle for updating interested parties on Maureen’s presentation.

I am exhausted by the events of the weekend.  My sleep pattern is very poor putting my mental well-being at risk.  No-one could sustain my current level of input.  Improving the co-ordination between all parties would be a helpful step forward.

 

 

Dementia: Upsetting The Apple Cart

General,

 

It looks like taking Maureen back to her childhood home has upset the apple cart  and may not have been a good idea after all.  She slept for a long time after her morning of visiting familiar ground and busking.  In between she had periods of upset – wanting to go home.  There were times when she looked completely lost in her surroundings and I had to guide her where to go when it was time for lunch.  She also asked me ‘if I always ate in this cafe as the tea was not what she normally drank’.

She got really mixed up late evening when she went to make a cup of tea.  After she had been gone for a while I checked up on her progress in the kitchen.  She had made two cups of tea and asked if ‘I would take one in for grandad’. The England opening match in the European Championship failed to impress her and she was asleep again when Russia equalised.

Maureen awoke when I closed windows in the lounge as I prepared to go to bed.  She said she wanted to stay on the sofa as she was nice and comfortable.  She mentioned she was going to write to her mum about a shortage of blankets.  When I pulled her granddaughter’s quilt from behind the sofa she asked me where Maeve was.  When I told her Maeve was in Coventry she said she wanted to go to see her.

Around 11.30 pm I could heard Maureen wailing on the Baby Monitor.  I rushed downstairs to comfort her and she told me that she was ‘going to go back to Nottingham in the morning to live with her mum’.  I eventually got her to go upstairs but she noticed I hadn’t brought up her usual cup of water to keep her mouth moist if she woke during the night.  Unfortunately, I stayed in bed and let her go down to find a cup of water.  As she had been gone for a long time so I went down to see what she was doing.

It took me a while to find her as she’d opened the patio door and was standing in the garden.  She told me she was ‘looking for her mum’.  She then returned to our bedroom and shut the door.  I opened it cautiously and found her looking out of the window.  She told me that ‘a policeman across the road was now watching out for her car’.  I said ‘I was pleased’ and she got into bed fully clothed, as she often does, declining to get under the quilt preferring the comfort of a blanket that she has when she sleeps on the sofa.

Maureen was awake at 1.45 pm trying to make sense of things.  She told me ‘I was stupid for telling her that no-one else lived here’ as she wandered from room to room looking for other people. She then told me ‘to stop speaking in that silly American drawl’.  It took some time before she settled on sleeping downstairs on the sofa warning me ‘not to wake her’.  Unfortunately I had to get up then as the Baby Monitor was switched off and she has found out how to open the patio doors and get outside.  I’ll have to try to catch up on sleep during that day because I’ve had none tonight.

As I tidy up the kitchen at 4 am Maureen is on the move again.  She declines a cup of tea saying she’ll make one when she wants one.  Then she announces ‘there are crooks and there are crooks who steal from their friends’ as she marches about the house looking for something.  She addresses me as someone who works here rather than her husband.  Which reminds me when we came across the busker yesterday he was singing: ‘You Don’t Know Me’ – how profound and one of Willie’s numbers:

Maureen has taken the opportunity of occupying the marital bedroom while it is vacant. She has thrown my pillows out of the bed and is sleeping in a central position. It looks like I’d better retreat to the spare bedroom for a while as that deep seated fear of men in her bed has returned: we all know the origins of that concern.  How sad it is that when she sleeps alone she can wake at any time totally distraught; fearing she has been deserted and locked in the house. Fortunately, I’ve managed to make sure the Baby Monitor is switched on so I can be with her if the need arises.

At 5.45 Maureen is on the move gain looking for a cardigan that her mother embriodered for her.  This is something I’ve never heard of before and I think she means a cardigan that I recently bought for her.  I’m wrong again she is talking of the cover for the continental quilt that we bought some time ago which is on the bed inside out causing confusion.

Maureen woke again at 7.15 as I was having my first an hour of shuteye. She tells me she ‘just wants to get better’ and welcomed me lying beside her on our bed.  I hold her tight and eventually sing some silly songs which are warmly appreciated.  After I finish drafting this post(something I’ve beeen doing on and off for quite some time)  I’m on duty as ‘Tea Boy’ but my guess is she will be asleep before I reappear with the goods.

I’m worn by the events of the last 12 hours: it’s been relentless.  I plan  may to ask the Care Agency for a hour or two of carer time if it is the weekend that our regulars work.  I would guess professional advice, on Monday, will be to  call off plans to visit Coventry next weekend and try to ‘settle her’ as the saying goes.  It’s a miserable old day in Cleethorpes this morning so we will have an easy day not straying far from the house: which will probably never be home as far as Maureen is concerned!

Dementia: Going Back Home

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A couple of hours ago I  responded to Maureen’s constant plea to be ‘taken home’:

She was so happy to be back in familiar territory walking down the back ally of where she used to play as a child.  It was a pleasure to see her ‘back home’ and gaining a sense of belonging once again.

Then she met Roy the ‘Head Honcho’ who is in charge of decorating up the ally for the Queen’s Birthday:

When we came across a busker in the shopping area Maureen couldn’t resist singing along with this Willie Nelson look alike to my request of ‘Always On My Mind’:

 

I just had a sneaky feeling that taking her back just to her childhood home a few miles away in the centre of  Cleethorpes would do the trick.  She’s spark out on the sofa now after what she described as a ‘great morning’.   You have heard of Amazing Susan in previous posts but what about Marvellous Maureen from now on: that wife of mine is incredible.