Tag Archives: Better Practise

Dementia: The PC Protocol

Mixed Dementia,

Image result for Protocol for Dementia Picture

With my initials what else would I call my approach to being Maureen’s Care Partner than The PC Protocol?  Over the next few days, I aim to clarify my Protocol and outline its effectiveness in maintaining or even reversing cognitive decline.  I fully accept that my evidence will be anecdotal and totally subjective.  My methodology will be to relate daily events.  My approach will lean heavily on Eric Berne’s Theory of Transactional Analysis: if something doesn’t work try something else.

Several events over the weekend have convinced me that I’m onto something.  On occasions, Maureen has astounded me by her approach to situations and her ability to recall.  It hasn’t all been plain sailing and there have been times when she has been distressed and I have been tearing my hair out.  For example, attempting to assist her when she was wearing four pairs of pants and becoming very uncomfortable – it took 24 hours before she would let me get them off (x3 ).  I accept I’m being selective in the events I have chosen to relate over the last 48 hours but here goes:

On Saturday morning Maureen’s performance in Freeman Street Market was heartening.  I confused her to start with as I foolishly parked at the front of the market which meant that our entrance was not our normal way in.  Once at our favourite stall she was a revelation as she selected our fruit and vegetables.  She noticed that new staff were on duty and was relieved when the owner turned up and made a fuss of her.  In the afternoon she was keen to have a choc ice and I used her desire to encourage a walk to our local Spa Store, even though we had a box in the fridge.

I deliberately took her on a familiar walk to the Spa Store and reminded her of focal points on our route.  She remembered some of the familiar sights and remarked on how well locals were keeping their gardens.  Once in Store, she bantered with staff who were stacking shelves or on the tills.

During the evening I had a fascinating time listening to Maureen on the Baby Monitor as she comforted a young boy in our lounge.  She was trying to make him some shoes as he was poorly shod.  I heard her efforts to comfort him as she encouraged him to sleep.    Almost half an hour I found that she had dropped off on the sofa where she slept for the remainder of the night.

On Sunday morning we had our own version of Singing For the Brain.  Maureen was in great voice as she sang along with her granddaughter on YouTube, applauding us all after every number.   She was very pleased to greet one of our gardeners when her arrived to paint our newly constructed fence.  Once he began painting I reminded Maureen of her wisdom in encouraging me to stick with Oak Brown, rather than going for the trendy colours that are all the rage at the moment.

At several times in the day, she related her anxieties about the young boy who had no shoes.  I reassured her that his mother was pleased with her intervention the previous day and had the matter in hand.  This issue may well be related to her past when a dentist scalded her for bringing her son to his surgery with cardboard to cover the holes in the sole of his shoes.

Maureen has slept well for the last three nights, my sleep pattern has also improved. This may well be because our afternoon siestas are now a fixed feast and paying dividends.  I also cancelled carer sits over the weekend because they were with unknown quantities.

I cancelled carer sits over the weekend because they were with unknown quantities.  Maureen has really appreciated two days when we have reclaimed our own home from ‘The Girls’ daily invasion into our lives.

During the weekend I have lavished Maureen with praise and TLC; never wasting an opportunity to play music or burst into an appropriate song.  This one from Ali gives you a flavour of things:

The P C Protocol is not written in stone it is an organic approach to being a Care Partner.  I have never liked the idea of ‘going with the flow’ as that is something I associate with dead fish.  I have also made my feelings on Kate Swaffer’s ‘Prescribed Disengagement’ clear from Day One.

The icing on the cake yesterday was Maureen’s words as she stumbled into bed beside me late last night.  She said she ‘wanted to wash under her arms’ and then added she could probably ‘do with a shower but was frightened of falling in the cubicle’.  Then she amazed me once again; remembering that we were short of toilet soap and that she had forgotten to clean her teeth!

Dementia: The Drugs Don’t Work

Mixed Dementia

There is no treatment for  Maureen’s condition – vascular dementia.  The medication that she has been prescribed for the last three years has been aimed at preventing a further stroke: lisinopril to control her blood pressure and rivaroxaban to thin her blood.

Last week following an assessment by a Specialist Doctor Maureen was also prescribed trazodone to address raised levels of anxiety and hallucinations.  Because she is highly sensitive to any form of medication she was prescribed the lowest possible dose.  I have been informed that she would need to be monitored very closely in case she had an adverse reaction to this new medication.

Maureen has been refusing any medication for months – never taking it on a regular basis. Therefore, I have not even offered her any tablets for the last few weeks.  In that time her blood pressure has been monitored and been at an acceptable level.   It has been a blessing to avoid the daily battle of attempting to persuade her to take tablets.

Following a meeting with Maureen’s GP last week I have agreed to try to get her to take her blood thinner once again.  The early signs are positive as she is cooperating at the moment without undue pressure from me.   I have agreed to review progress with her GP early next week and to leave a small bottle of trazodone unopened.

In my view, Maureen does not need the latest medication that has been prescribed by the Specialist Doctor. – it is an antidepressant and may well be being prescribed off label! I have checked it out in a number of quarters and I don’t like the sound of it at all – particularly as it is primarily a sedative.

When the SD was here I made it clear what I thought was causing changes in Maureen presentation: her environment -being deserted by her family and living on a Building Site.  I have already done something about the former with family visits now scheduled for the next three weeks.  The latter will be resolved within five weeks when the Building Site blossoms into a Sun Room.

We know that the drugs don’t work for vascular dementia: we also know that medication cannot resolve loneliness or living on a Building Site!

The other treatment that doesn’t work for Maureen is a time in a Care Home.  All Respite Breaks have had a negative impact on her well~being.  Therefore, the only Care Home she will stay in from now on is our own home.  Any person-centred approach to Maureen’s care would understand that separating her from her husband would make no sense to her and remind her of bad experiences in her previous marriage.

It is fortunate that during my last break I was able to meet with Irving Kirsch and Tom Schuller: two academics who continue to have a significant impact on our lives.  If I hadn’t read Irving’s book I would have believed the ‘chemical imbalance myth’ about depression and been on antidepressants for life.  Without Tom’s support during my time at Warwick University, I wouldn’t have a Masters Degree in Lifelong Learning and the Management of Change and developed skills that are vital in my role as a Care Partner.

A few weeks ago Maureen paid a high price for my trip to London to meet Irving and Tom – 5 days and nights in a Care Home – but she would have wanted me to thank two men who continue to have such a positive impact on our lives!

(I’m seated in the photo above: with Tom in the middle, and Irving on the right.)

As there have been some really positive developments over the weekend I’m posting what is a sort of Working Position on The PC Protocol for Dementia this evening.  This is not an approach written in stone apart from the two basic principles that I have outlined above:  NO MORE DRUGS or CARE HOMES!

My Monday morning post will outline what has been a really positive weekend!

 

Dementia: Only Three Hours To Go

Mixed Dementia, ,

Image result for Three Hours To Go Picture

It’s reassuring to know that Girl Tuesday will be here at 10 am.  She is a very experienced carer and has been working with Maureen for over three years. I trust her judgement implicitly.  She is the expert on how best to support Maureen and my approaches to being Maureen’s Care Partner have been fashioned by watching her in action.

Maureen’s early morning concerns were that ‘Granddad was in trouble’.  He was lying on the floor of our dining room bleeding from a head wound.  She was very worried that she didn’t know how to summon help and requested my assistance.  It took about an hour before she stopped roaming around the house banging on doors and windows in an effort to get help.  We now know that from the Lab Report that a UTI is not behind such episodes.

‘My apprenticeship’ with Girl Tuesday will shortly come to an end as Maternity Leave is a couple of weeks away.  In the last three years, she has been with Maureen for at least 6 hours a week: on Friday she is here for a shift of that length.  When she arrives later than predicted this morning; out of breath from running from one call to the next without any travel time, we will have a catch-up chat.  This will help me to determine the best way to support Maureen as her reality continues to fluctuate.

I have jokingly told Girl Tuesday (and Friday this week) that our Sun Room can also be a Nursery when her little one arrives.   We both know that Maureen will really miss her:  she isn’t the only one!

I sincerely hope that this Girl will continue to be part of our lives when she becomes a mother.  ‘The Manager of this Care Home’ is well aware that some of his contemporaries have seen how babies bring such positive benefits to their establishments!

We would not cope without YouTube and Maureen has been in fine voice this morning.  I continue to call up our old favourites . Our Song Bird has a magical effect on Maureen: the transition in her mood is palpable when her talented Granddaughter is on screen.  The words of this number have particular resonance at this moment in time:

I contacted this talented young lady by text last night and she is going to send a personalised video message to Maureen later-on today.  When I saw the impact that a message from the ‘Top Dude’ had on Maureen yesterday I knew we were onto something. ‘T D’ is what my sister calls her only son and his knick name goes nowhere near the positive impact this young man has had on so many lives.  Whenever I mention him to Maureen her face lights up as she remembers what a fantastic time she had showing him around Cleethorpes.

Dementia: Dealing With The Care Crisis

Mixed Dementia,

 

Image result for crisis in social care picture

Yesterday Susan Macaulay asked a very pertinent question:

‘AmazingSusan says:
August 8, 2017 at 2:44 am (Edit)

Renovations are stressful for anyone – living with dementia or not. I’m wondering what the purpose of this reno is…? Not that it seems it can be stopped now, in mid stream 😦’

I’m sure this is a question that is on the tip of the tongue of many of my followers.  There are two simple reasons for the renovations that are taking place:

  1. To protect Maureen’s Best Interests.
  2. To attempt to address the crisis in Social Care.

Some time ago a decision was made that it was in Maureen’s Best Interest for her to remain at home.  Therefore, I decided our house needed renovation to ensure it was adequate for all future eventualities.

The local crisis in Social Care grows as the year progresses.  Our Main Care Agency had a 48% turn around in staff last year.  They are forever short of staff and making unreasonable demands on carers:  one of our ‘Girls’ is six months pregnant and it is not unusual for her to work an 11-hour shift without a break with no time for travel between calls.  This Agency recruited 8 additional staff a couple weeks ago and 7 of them have now left.

Within Residential Care, it is the same story: a shortage of staff and high turnover of personnel.  Last week I enquired how things were at a Care Home where Maureen had stayed in the past and was told by an ex-member of staff ‘they have all left’.  A familiar tale of staff following their Managers who attempt to move on to better things at neighbouring homes.

Having a Sun Room along with a self-contained shower room will give all sorts of options for the future.  It will make it easier for family members or live in carers to stay and provide the support. that both of us are likely to need in the future.

‘Rain stopped play’ on the Building Site yesterday and gave us both a much-needed break from the stress of renovations.  If the weather forecast is right our Sun Room will really take shape in the next week as the shell of the building will be completed and watertight.  Although yesterday’s deluge would have tested any building!

Thank you for raising questions about the renovations Susan and I hope I am covering as many bases as possible as the crisis in Social Care progresses by the day.  I’m sure if I have overlooked anything kind readers of this Blog will let me know!

Maureen is in good form this morning waving, singing and clapping after every tune on YouTube.  It’s still pouring down so I just had to play this one:

Hey, Kate Swaffer I know you are a big fan of Willie but do you know who is playing the piano on this number?

Dementia: A Change Of Tack

Mixed Dementia,

Image result for Changing Tack Dementia Cartoon

I got it completely wrong this morning with my 2 ‘o’clock greeting to Maureen as I heard her make her way upstairs.  She didn’t respond at all well to my Charlie Drake impression of: ‘hello my darling’.  It soon became clear that the feelings were not reciprocated as I was the man who was encouraging her ‘to sleep or dress up in horse blankets’.  She then went on to ask ‘why was I talking in a strange voice or if I was drunk?’

It didn’t take me long to grasp that my aspirations to get her into bed beside me were rather optimistic.  Clearly, my hopes to provide early morning cognitive stimulation were out of the question: getting my marching orders were far more likely!  However, rather than leave Maureen to rant I decided to change tack in an attempt to shift her reality.

My first move was to address the horse blanket issue head on and agree that we needed softer bedding.  Two old nags like us need the comfort of continental quilts and all we have to do is cut up a double to make two singles.  Having solved this issue I returned to something I had mentioned yesterday: to start sketching again  I  showed Maureen some of my previous work.  She suggested that I had a hidden talent for drawing and that led me to mention Susan Boyle.  Once I called her up on YouTube we were away; singing along for over an hour, especially to this one:

I think I will leave my Charlie Drake impressions alone for a while: I’m clearly not at my best first thing in the morning!  Sketching is something that may well become a joint activity particularly if I choose the right moment and have some music on in the background.

A short while ago Maureen asked me ‘how is grandma this morning?’  I’m used to her not knowing who I am but her son was shocked yesterday when for a while she thought he was her brother.  He was also surprised by how much her dementia had progressed since his visit earlier in the month.  Maureen has not mentioned anything about her son following his visit and remains distressed by the absence of visitors!  I have asked our Key Worker to visit on Wednesday afternoon to review Maureen’s presentation.  It is now a year since I was told Maureen had ‘moderate to severe dementia’ and her son and I both wonder if that diagnosis is still appropriate.

Dementia: Saved By Sheard

Mixed Dementia, Uncategorized

David Sheard has prevented me from making a real bloomer on Friday with my planned Pilgrimage To Paddington.  His assertion that feelings matter most has caused me to change my plans in a positive direction.

I shudder to think how Maureen would have felt if I had excluded from meeting Tom Schuller and Irving Kirsch on Friday:  two people who have had such a significant impact on our lives.

We were work colleagues when I did my Masters Degree under Tom’s stewardship, thirty years ago.  More recently,  his suggestion that music therapy might be beneficial has transformed our lives.

Irving’s research has helped us both to see that the ‘chemical imbalance’ explanation for depression is a fallacy and antidepressants are not automatically the panacea.  Maureen rejected antidepressants when they were offered by Mental Heath Nurses from the Memory Service shortly after her stroke. However, a Senior Manager from the same department did us a real favour a short while ago when he alerted me to the work of David Sheard.

I have now booked a chauffeur to take us both to London on Friday and made the arrangements more dementia friendly.  We will now avoid Central London by picking Irving up in Reading and meeting Tom in Ealing.  A gradual introduction to two new faces, who are both Professors will hopefully minimise the potential for distress.

An added bonus of our plans is that our chauffeur is familiar with dementia as his mother has the condition!

Footnote: Click <HERE> for my weekly cognitive stimulation summary.

 

Dementia: Reclaiming Weekends

Mixed Dementia

Image result for Reclaiming Weekends Picture

My sister and her husband will be here at noon with lunch.  They offered, once again to bring all we need to give me a break from my duties as the resident chef.  This fits in very nicely with my plans to reclaim weekends as time off.from my duties as the resident chef.  Last week Girl every other Sunday prepared our lunch and made it a day of rest.

Care Partners having weekends: whatever next- watch this space!

Dementia: Maureen’s Left Foot

Mixed Dementia,

Image result for My Left Foot PictureOur day didn’t go at all as we planned yesterday.  Rain stopped play as far as our trip to Louth was concerned then Maureen’s left foot led to us being housebound until early afternoon.

Maureen’s left foot rarely feels comfortable following her stroke.  It is frequently cold and yesterday’s remedy, two pairs of thermal socks, caused immediate problems.  She sat for quite some time trying to find a way of easing a foot that was probably size eight into a shoe that was size seven.  Eventually, she gave up on the idea suggesting that roller skates or a pushchair might solve the situation.  It is refreshing to hear that she can still think outside the box.

I was really relieved when Girl every other Saturday arrived at noon.  I had misread a letter from her Care Agency and expecting a  new kid on the block I had cancelled the call.  What I had missed was that this change is going to take place next week because the other weekender is no longer working for the Agency.  This is a real pity as we will be losing someone else who Maureen liked and will be facing another period of uncertainty.

Maureen’s problems with her foot faded once she was in the company of another woman.  She spent the next couple of hours chatting, joining in with preparations for lunch and tidying up the house.  How fortunate our Key Worker realised that I had got it wrong and did not cancel the call!

Our evening stroll took the normal circular route with me commenting on landmarks as we walked around what I hope is becoming familiar territory.  I didn’t let go of Maureen’s hand during our walk.  However,  I’m hoping I might be able to relax a little as we repeat the exercise.  I have to play this one very carefully as I have warned off engaging in any ‘positive risk taking in the community’.  It would be reckless for me to go down this road until I have cleared my strategy for giving Maureen an element of freedom with professional staff.

We finished the evening off with ‘The Great Parsnip Hunt’.  If they are not on the plate for Sunday Dinner the Resident Chef would be on a Final Warning.  As our local Spa Stores rarely stocks this precious vegetable we ventured into Cleethorpes to ensure that they will be on the menu today.  It was good to see that Maureen didn’t appear to feel out of place in the unfamiliar surroundings. of Cleethorpes Coop.

It’s a fairly bright start to the morning and we haven’t any fixed plans today.  If the going is good I might pop to the Leisure Centre and leave the girls to prepare vegetables for the return of the Resident Chef.  I just wonder if I could ever teach Maureen to Chef again but I think forgetting how to cook might just be a ‘Cunning Plan’ on her behalf!

Dementia: Fabulous Friday

Mixed Dementia,

Image result for fabulous friday pictures

Lots of good things happened yesterday hence Fabulous Friday:

  • Girl Friday put in another sterling performance engaging Maureen throughout her visit.  We will miss her when she goes on Maternity Leave.
  • Maureen’s Occupational Therapist called to offer support on cognitive stimulation.  She assured me that I was ‘doing all the right things’ and warmed to my ideas on community cognitive stimulation.  We have agreed to touch base at the end of next week to review progress on CCS.
  • Two Community Support Officers called following a chance meeting with their sergeant the previous evening.  They have us on their radar and will support us in all sorts of ways.
  • Maureen really came good in an evening visit to our local Spa Stores.  She reminded me that we needed sugar and looked very comfortable as we searched for bargains.

We had planned to go to Louth today as Maureen was keen to add to her wardrobe.  Unfortunately, after a beautiful sunrise rain has set in but the weather is not going to spoil our day.  If it remains wet we will call to see the friendly stallholder in Freeman Street Market.

Dementia: ‘Baby Come Back!’

Mixed Dementia

Maureen was in great form yesterday from the moment we ventured downstairs.  Our early morning bird spotting went well as we sat in the dining room watching the comings and goings in our back garden.  Then ‘my baby really come back’ as we moved into our lounge.  I’m sure Ali Campbell and Pato Banton brought back such happy memories for her as I called them up on YouTube:

She sang along as she had over 20 years ago when we saw them both in concert.  Then babies dominated the discussion when Girl Tuesday arrived a few hours before her scan that would hopefully tell her that all was in order with her pregnancy.

Girl Tuesday is a very intuitive carer and moved Maureen from the kitchen sink to the shower on the pretext that this was now the only comfortable way to wash her hair.  At three months how on earth could she be expected to bend over a kitchen sink?  Her efforts meant that ‘my baby had really come back’ as Maureen looked great on my return from Cleethorpes Leisure Centre.  Her hair is now a beautiful silvery grey that most women and men would pay a fortune to achieve.

The afternoon progressed in a similarly positive manner.  Our stroll took us to Ticker-T-boo where the staff always go out of their way to talk to Maureen.  I spent a pound on a door alarm and Maureen had a lively chat with the shop assistant.  We then ventured over to the Beachcomber Holiday Camp checking on their preparations for the coming season.  As we turned to come home Maureen thanked me for taking her out saying ‘she was pleased that the locals spoke to her even though they might think she was retarded or mentally ill’.

It is rather ironic that Maureen often attributes her shortcoming to mental illness rather than vascular damage.  It is possible that she remembers my periods of depression and that is clouding her judgment.  She may be reminded of my depressive episodes this morning when I tell her I’m going to meet Paul Martin the Counsellor at Clee Medical Centre.  He built on the good work of Navigo to help me put my depressive episodes into context.  I see Paul every 6 weeks.   I hope to meet Irving Kirsch one day to thank him for his research that  helped me to understand that mild to moderate depression is not the result of a chemical imbalance and does not require a lifetime on antidepressants:

It wasn’t the medication that helped Maureen’s baby come back it was the therapy that helped me understand that depressive episodes were a reaction to my environment!

Image result for home alone picturesUnfortunately, as dusk approached there were significant changes in my environment and Maureen’s presentation.   She began accusing me of ‘keeping her a prisoner’ and wanting to go back to her children.  As is always the case I had no additional staff to call upon and faced a night of being Home Alone!

I was really taken aback by Maureen’s presentation after such a lovely day together. Homefield House reported similar experience during her stay in Respite Care: positive interaction during the day but challenging behaviour once night set in. Eventually, after a protracted battle, I managed to get her to bed by 1.30 pm which is earlier than Homefield House ever managed!

Maureen woke around 4 am asking for guidance to the bathroom.  On her return, she bared her chest to me and told me someone had stolen her underclothes.   She hasn’t been wearing a bra for months but is adamant that someone has been at her bust while she has slept.   I have made several attempts to help her but she is distraught and has been trying to pull up her trousers to support her bust.

I won’t have an opportunity to catch up on sleep today as there is no day shift to come on duty.  Rather than taking rest I will need to summon support as soon as the phone lines open for business.  I sincerely hope that any assessments of Maureen this morning are undertaken by professionals from the Irving Kirsch school of thought: ‘Dump the risky drugs’: adding further chemicals to Maureen’s body when she is already struggling to deal with the progression of her dementia seems rather risky  We don’t need dodgy medication we need additional carer sits if I am to have any chance of avoiding Carer Burnout!