Category Archives: Mixed Dementia

Dementia: Choosing Your Guru

Mixed Dementia,

Last week I cancelled the carer sit on Thursday so that Girl Friday would be here for six hours the following day.  With extra time on my hands, I had to decide between lunch with my Buddhist friends in Pocklington or the company of Girl Friday – my Guru for caring for Maureen.  My choice was made easier by the fact that Girl Friday is only with us for another couple of weeks as she is about to go on Maternity Leave

Girl Friday has been my Guru on how to care for Maureen for over three years and I need to spend as much time as I can with her before she moves onto motherhood. Neither of us was surprised that Maureen’s dementia is now regarded as severe but we were both taken aback by the prescription of trazodone.   We both know that desertion by her family, and living on a Buiding Site are really getting to Maureen at this moment in time.  Medication that has the capacity to sedate her will not increase family contact or speed up the building of our Sun Room.  Girl Friday and I know Maureen needs compassion and empathy rather than medication.

I didn’t regret my decision to stay in Cleethorpes on Friday because YouTube meant that one of my Buddhist Guru’s was still close at hand.  The following video clip on suffering is particularly helpful to anyone who is dealing with dementia:

I managed to catch up with another one of my Guru’s yesterday; a Support Worker from the Alzheimer’s Society.   I knew she was running a Memory Cafe at a local Day Centre and decided to pop in to thank her personally for her support.  For administrative reasons, I have been told that I am no longer able to receive support from this individual.

A new Pathway for Carers means that I’m no longer allowed to have a foot in both camps – I can either use Admiral Nursing for support or the Alzheimer’s Society.  How ridiculous that as Maureen’s dementia progresses, support that I have found extremely helpful has been withdrawn.  This is a battle I could do with winning but I have to focus on more immediate struggles at the moment – the prescription of trazodone.  In my view,  that is the first step on a very dangerous ladder for Maureen.  I have seen how medication prescribed to deal with my brother’s aggression has left him incontinent and just about able to manage a smile.

I have no intention of persuading Maureen to take medication that she doesn’t need and has the potential to harm her.   The suggestion that I should give her trazodone covertly is abhorrent.  Maureen is an intelligent woman and if she discovers I’m deceiving her in any way our loving relationship would be brought promptly to an end. Hell has no fury like Maureen being deceived: particularly when she had that experience in her first marriage!

Footnote: I have decided to engage directly with another one of my Guru’s this morning:  Peter Kinderman Professor of Clinical Psychology at Liverpool University.  He leads this Future Learn Course: ‘Psychology and Mental Health: Beyond Nature and Nurture’ and I have signed up for it a short while ago.

 

 

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: The Right To Say No

Mixed Dementia,

Image result for The Right To Decide Picture

We had a beautiful day yesterday.  The sun shone for most of the day as we enjoyed the kind folk of Cleethorpes at their best.  Some of them we had never met before, others  often support us on this journey:

  • A new face at the paper shop was lovely with Maureen when we collected an early morning loaf.
  • Two locals in the above shop chatted away to Maureen as we stood waiting to be served.
  • The ‘Blanket Lady’ a homeless woman who lives on the pavement in the centre of the town had a lovely conversation with Maureen as she continued asking passers by if they had any spare change.
  • The shop assistants in the Card Factory bantered with Maureen as we waited for our next helium filled balloon* to be blown up.
  • A young lad and his baby sister entertained Maureen for a few minutes as their mum made a mobile phone call.

* The choice of the balloon was a ‘no-brainer’ because Maureen had been distressed by an afternoon phone call from her son.  She said ‘ he didn’t even ask me how I was and I’ve been lying in bed ill for months’.  Such calls feed her anxiety that no-one really cares about her.  When we got home and I let the balloon loose in our lounge she struggled to read the words and then she said ‘I love you too.’

We finished our time in the town centre with a reminiscence walk as I guided Maureen around the area where she used to live as a young child.  As we walked the route she would have taken to get to Primary school,  she amazed me with her recollection of events over 70 years ago.  She recalled where her mum used to get baby milk and pay her mortgage.  As we bought a few things for our evening meal she remembered the first time she had ever seen tinned food.  Reminiscence therapy is always regarded as ‘Good Medicine’ for those with dementia and Maureen loved recalling her childhood.  In the evening, she made it perfectly clear what she regarded as ‘Bad Medicine’.

Following our evening meal my efforts to get Maureen to take her blood thinner (rivaroxaban) fell on the stony ground once again.  I tried to prompt her in several ways to no avail.   Eventually, I left her to it and half an hour later found the little red tablet discarded on the floor.

I count my blessings for such a beautiful day and  I have no I have no idea what today will bring.  The only fixed feast is to continue to offer Maureen her medication and note the outcome.  Some would suggest she lacks insight into her need to take prescribed medication but if they were here 24/7 they could not arrive at such a conclusion: she is asserting her right to say NO!

A final word from one of our heroes on this theme:

Love and peace for the weekend; sisters, warriors, and brothers.

Footnote: I have decided to close my Good Music page.  YouTube and playing records are such an integral part of how I support Maureen that I will share tunes that have had resonance on this page from now on.

 

Dementia: Now It’s ‘Severe’!

Mixed Dementia,

Image result for Severe Dementia Picture

It came as no surprise to me yesterday when Maureen’s dementia was classified as ‘severe’ in the opinion of the Specialist Doctor from the Home Treatment Team.

 Any follower of this Blog would have already gathered from my daily description of events that decline had been a feature of Maureen’s presentation in the year that followed a diagnosis of moderate to severe dementia.

Once the ‘cat was out the bag’ – so to speak I attempted to assert a Working Position for the next couple of weeks.  As always as I contacted members of our MDT and other supporters of our cause the response was always person-centred:

  • There is a tacit agreement that trazodone will only be administered once we have something to measure its impact against.
  •  There is a general acceptance that using Care Homes is counterproductive at this moment in time.
  • The door is always open to contact members of our MDT when needed.
  • Our general health and welfare will be monitored closely.
  • Those family members who are aware of the new diagnosis recognise the importance of maintaining contact.

When your GP phones you with an appointment less than two hours after the new diagnosis you count your blessings, as I always do, that you live in this area.  My hardest task yesterday was persuading Maureen to accompany me to Clee Medical Centre to see a G P who always treats us both with dignity and respect.   Then it gets even better when Reception Staff agreed to keep an eye on Maureen so I could chat to our G P in private!

 

 

 

Dementia: Patience Is Key

Mixed Dementia,

 

Image result for patience is key

I had to seek help last night when Maureen was very distressed and refusing to come home.  A stand off took place outside her Aunt’s home and it took a long time before we were able to ease Maureen’s distress.  It is worth noting here that her Aunt is a veteran of dementia care having supported her late husband for over 20 years.  His Alzheimer’s presented very differently to Maureen’s mixed dementia but nevertheless, she was in good hands.

When Support Workers from the Home Treatment Team arrived on the ground Maureen had calmed down a little.  From a distance, it appeared that they were a ‘red rag to a bull’.  The ‘other women’ were now in Maureen’s face just as a woman from our neighbourhood had been earlier in the day.  I returned to the scene and tried to play my trump card of getting Maureen and myself away from these two ‘interfering bitches’ and that’s putting it mildly.  They had told me that Maureen was being abusive and upsetting her Aunt and ‘none of this was fair’ to any of us.

Eventually, her aunt and I managed to get Maureen into ‘her car’ and I drove her home. When a Nurse from the HTT arrived at our door she saw that Maureen was no longer distressed and left us to it.   Maureen and I then had a very pleasant walk along the Prom and around Cleethorpes: just the sort of time that Maureen craves.  She wants us to be left alone so ‘our courting can continue and we can get to know each other’.

We both agreed that walking around Cleethorpes at night was preferable to sitting in front of the TV.  On our return home I managed to persuade Maureen to put her PJ’s on – the pants went over another pair.  It took a long time to remind her where the bathroom was and which side of the bed was hers.  Once in bed, she settled down and dropped off to sleep quickly.  She woke following my early morning return from the bathroom and was lost in her surroundings.  It took a while to guide her to the bathroom and on her return, she dropped off within minutes.

I’m very grateful for the Nurse from the HTT  her wisdom prevented Mauree going down what could have been a difficult road.  This morning there is a scheduled visit from a Specialist Doctor following the request for an assessment from the Home Treatment Team.  IMHO Maureen could not be in safer hands than with someone who has often supported us on this journey.  Twelve months ago this doctor, who exudes empathy, told me that Maureen had moderate to severe dementia.   It will be interesting to hear her assessment this morning.

Our Key Worker reminded me yesterday that we are all acting doing our best to protect Maureen’s  Best Interest.   Therefore, patience is key at this moment in time as we all respect the decision to allow to remain in her own home.   There are five weeks to go until her home is fit for purpose.  The Sun Room, along with an additional shower room will make then make it easier for family members and carers to stay in our home to give us both the additional support we now need on this unforgiving journey.  Talking of showers – I managed to persuade Maureen to have one this morning and wash her hair.  In the last six weeks, I’m the only person who has been able to persuade Maureen to have a shower: three in six weeks.  If I’m patient things can only get better!

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: I’m Not Counting My Chickens

Mixed Dementia, ,

Image result for I'm Not Counting My Chickens pictureMaureen seems more settled after a Lorazepam induced rest.  It’s early days so I’m not counting my chickens before they’ve hatched.  I will share further detail on Monday when I next post.

Sincere thanks to all of our supporters -have a good weekend.

Dementia: I Hope It’s A UTI

Mixed Dementia, ,

Image result for I hope It's A UTI Dementia Picture

I’m posting this blog shortly after midnight.   I woke a short time ago to find Maureen standing in the kitchen talking to a vacuum cleaner that she has wrapped in a blanket. Several assessments will take place later on this morning to try to establish what is behind significant changes in her presentation that began to emerge yesterday.

Once again, I count my blessings that we live in North East Lincolnshire where telephone assistance is available 24/7.  I’m keeping my fingers crossed that a UTI and lack of sleep are behind her presentation.  I’m also hoping that the little girl in our vacuum cleaner continues to provide Maureen with comfort.

Updates will follow

 4.20 am  I’m hoping that a Mental Health Nurse from The Konar Suite will be here shortly to assess whether medication might help to calm Maureen down – I have never seen her like this before!

4.40 am  Just received confirmation from the Mental Health Nurse that Rapid Response is on the way to conduct a physical assessment of Maureen.

Dementia: We Will Miss Glen Campbell

Mixed Dementia

I needed a song for Maureen this morning as she feels deserted by her family.  She knows that they are all busy but can’t understand the lack of meaningful contact.

Every morning I sing her songs to Maureen’s to let her know how much she means to me. Today, knowing that Glen Campbell had just passed away I searched amongst our vinyl for an appropriate song from him.  Our records are not in alphabetical order and I was just about to give up when I found this number on a Country Album:

My Admiral Nurse has always encouraged me to fight winnable battles and I have now accepted that trying to get family members to change their ways is a lost cause.  My focus has shifted to telling Maureen how much she means to me and Glen did the trick this morning.

I would like to pass on my sincere thanks to Glen’s family for sharing their journey so openly.  The following number epitomises the brave way they all faced dementia: