Dementia: Time For Some Straight Talking

Mixed Dementia, ,

Image result for Time for straight talking graphic

This is no time for beating around the bush: Maureen is on a downward spiral.  No one knows what is behind the increased level of confusion and the attendant ongoing challenges she is presenting to me and carers   Anyone who suggests it changes from day to day should witness this: it’s frequently within minutes that our status changes from friend to foe.  What I can say without fear of contradiction is that I’m very tired and that a reappraisal of our situation is required.  That is why I am requesting an urgent meeting of the Multi-Disciplinary Team.

I anyone else tells me I’m ‘doing a good job’ or suggests the solution is to ‘distract and redirect’ my response is likely to be in Anglo-Saxon.  As much as I appreciate compliments it is a time when action is needed rather than words.  We need to review whether the focus of professional input along with our Care Plan reflects where Maureen is in the progression of her condition!

From immediate effect, anyone who has or might be carrying an infection will not cross our front door. I took a chance last week with two individuals who may have brought the lurgy into this household and Maureen now has a heavy cold!

We would not cope without this guy at the moment:

It’s 4.30 in the morning and ‘Rudolph The Red Nose Reindeer’ is in great voice.  Don’t worry my cyber friend ‘Amazing Susan Macaulay‘ (pictured below):Image result for Susan Macaulay Amazing

I have videoed my ‘Singer Lady’ but as you know safeguarding issues prevent me from sharing her lovely voice on here.  If only you could see her joy when the Three Tenors are on it would bring tears to your eyes:

She is singing in Italian at the moment: it has to be‘Incredible Maureen’ from now on!

Dementia: Feeling Neglected and Stupid

Mixed Dementia, Uncategorized,

Image result for Feeling Neglected and Abused Elderly Woman Picture

Several people heard Maureen giving it to me yesterday and a common response was ‘I can hear what you are up against.’  I appreciate their empathy but they have no idea what it has been like lately: particularly during Storm Maureen. What they also fail to understand is their contribution to Maureen’s distress.  A frequent question from Maureen is where are my family; why don’t they come to see me?  The other burning issue for her is ‘why are people treating me as if I am stupid?’  This is her reading of how most professional staff are dealing with her.  I am at one with her on both issues.

Last night I asked those family members who are in contact to visit more often.  They assured me they will do their best to address Maureen’s feelings of neglect.

On Monday I will request an urgent meeting of the Multi-Disciplinary Team to address our concerns.  I will also suggest that certain professional staff not to darken our door until we have met.

Maureen was in great form at our YouTube Party from 2 until 4 this morning – I wish I could share pictures how much she enjoyed herself – my wife was back for those precious few hours.  She is still here after further sleep three hours later looking forward to an omelette full of good things to drive away any signs of a water infection.

As she has always asserted when she has been in a Care Home ‘those people are behaving as if they are stupid because they are being treated as if they are stupid!’

 

Dementia: The Storm Rages On

Mixed Dementia, ,

I thought I had weathered the worst of ‘Storm Maureen’ by 2.30 am when Maureen had dropped off to sleep.  Music had quelled the initial onslaught with songs from Peter, Paul, and Mary on YouTube:

The focus of the storm changed from thieves stealing Maureen’s car to searching for her missing mum when she woke around 3 am.  Two hours later she was ranting over the need to move out as everyone was ignoring her here and the house was too cold.

I’ve decided to move out myself this morning to Cleethorpes Leisure Centre, as I need to rejuvenate myself in the Spa and the Sauna.  It’s fortunate that Girl Friday is on duty again this morning: Maureen desperately needs one of her Pamper Days.

It wouldn’t need much thought to work out which song would be on my Good Music page today.

Update: On taking Maureen her first cup of the day at 7.45 am she has a simple question: ‘where is this big family of mine?’  She has forgotten her son was here two days ago but she knows that her visitors are now few and far between – a familiar tale for those who have dementia!

Dementia: Seeing The Light

Mixed Dementia

Image result for fibre optic lamp working modelI had a surprise birthday present yesterday; a fibre optic light I had forgotten I had ordered on eBay.   It was a cheapie and no instructions were included, so it took me a while to get it working.  From what I have seen so far it might just provide soothing light; even a  diversion when the going gets tough.

When I came downstairs yesterday morning I saw something I have possibly been reluctant to see.  Maureen told me that she had ‘made me a birthday card but couldn’t remember where she had put it’.  Then the reality check was before my eyes on the dining room table: a used envelope on which she had written ‘HAPPY XXX’.  Inside the envelope was a used sticky notelet book.  When I thanked her for the card she broke down and said ‘I can’t write any more’.

Half day closing yesterday at our Medical Centre meant that it wasn’t possible to check if Maureen has a UTI.  Even the collection of the sample caused problems with Maureen telling me ‘that Lady ( Girl Thursday) had made her feel a fool’ by correcting her approach to water collection.  I’m hoping that things go a little more smoothly in the morning and we can check if antibiotics are needed.

I’m beginning to wonder if we are now trying to shut the door after the horse has bolted.  It is possible that professional staff encouraging Maureen to widen her social circles and become more active could well be too little too late.

I think it is important for me to remain focused on minimising Maureen’s distress.   Those who have decided the Best Interest Meeting is the way forward could well be contributing to Maureen’s decline by scaring the living daylights out of her.

 Posted live at 2 am as ‘Storm Maureen’ has been raging for an hour!

Dementia: Just What The Doctor Ordered

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Image result for madhyamaka kadampa meditation centre

Yesterday, I took the initial steps to establish a regular day off from my role as a Care Partner for my wife. My first move was to explore the possibilities of Maureen going to a local Care Home from 10 am until 5.50 pm on Wednesday’s.  Then I requested that one of our Care Agencies resumed a regular night sit from 10 pm until 7 am.  Following a visit to our other Care Agency, I’m relatively confident that it will be possible for them to fill the gaps.  This will mean that I will be able to be free from my caring role from 9.30 am on Wednesday until noon on the following day. I’m hoping that this regular package of care will be in place by the middle of March.

The prospect of 24 hours every week at Madhyamamka Buddhist Meditation Centre (pictured above) fills me with joy.

A regular break from my caring role is just what the Doctor Ordered.

I couldn’t wish for a better present on my 71st Birthday!

It isn’t important that my other plans for yesterday didn’t really come to fruition.  We had a lovely time with Maureen’s son and that helped to distract her from the bad vibes of the previous day.  There was lots of redirection during the day as we shifted our plans to take account of Maureen’s energy levels.

I think it would be fair to say she was wiped out by the time her son left us to travel back to the West Midlands: she was no longer able to conceal the level of her confusion and fear.  Before she took to the sofa early in the evening she had been shadowing me; in tears constantly telling me how frightened she felt. This is not what the doctor ordered: a significant dip in her condition!

Dementia: Taking The Bull By The Horns

Mixed Dementia, ,

Image result for Taking The Bull By The Horns PictureI am planning to go for it this morning with an emphasis on distraction and redirection.  In the heat of the battle yesterday, I forgot a basic that any apprentice Care Partner should have grasped by now.  For a while, I foolishly tried to reason with Maureen to establish that I was a good guy.  Where on earth I expected logic and reason to appear from after all this time I will never know.   Such qualities have long gone and when abject fear took over the going got really tough.

I should have known that two strangers from the Local Advocacy Service probing Maureen about what she would do if I wasn’t here would spell trouble.  I could have anticipated that fear would eventually lead to her turning on me as the driving force for the probing questions. However, I was taken aback by the force of Maureen’s reaction and failed to apply distraction and redirection techniques.  It took telephone coaching to put me back on the straight and narrow and for Mrs Dementia to be put under pressure and for glimpses of my loving wife to return.

So this morning I have a cunning plan to take the Bull by the Horns.  Maureen’s son will be here around 10 am and I going to involve him in the Birthday Mission.  If all goes well we will go into Grimsby to help Maureen solve her inability to access her own money.  Our first call will be her bank so she can cash a cheque and order a new pin number for her debit card.  Then she will have cash in her purse: a common complaint is that she hasn’t tuppence to her name. Our next call will be for her to buy the ‘old man’ a card and a present for his 71 st tomorrow.  If she wants to get me a surprise I can leave them to it and wander around Grimsby by myself for a while.

If my cunning plan doesn’t work I can always play ‘More Than Words’ tomorrow morning as a reminder of the good old days:

This was OUR SONG in the early days of being together: if Mrs Dementia surfaces tomorrow she can Take That!

The context for my bright ideas this morning is that Maureen has been wanting to go home since 3 am.  She wants to live with her parents again, where there are no thieves stealing her clothes.  I have listened to her concerns and tried to put her mind at rest to no avail.  I attempted to distract her by talking about the impending visit of her son; with unfortunate consequences.  I listened to a diatribe about him for quite some time.  She doesn’t know ‘what he looks like and knows nothing about him as he never comes to see her.’ Her disappointment about the diminishing level of contact with her family is palpable.  She has been pleading with her daughter who died some time ago to come back, as she was a real friend.

Around 5 am I decided to give Maureen some space – hoping that the passing of time would lead to a change in her presentation.  My hunch paid off and by 6 am she came to tell me: ‘she didn’t know what she would do if I wasn’t here’.  It will be interesting to see how she presents when her son arrives.  One thing for sure, I will need our night sitter on duty tonight so I can try to catch up on a bit of shut eye!

Dementia: Having ‘A Once Over’

Mixed Dementia

Image result for Having A Check Up Elderly Woman pictureMaureen will complete the final part of her ‘once over’ this morning when she has her blood and water tested.   Her GP checked her out yesterday finding her blood pressure was slightly elevated.  He also organised a Practice Nurse to swab her troublesome mouth to establish the nature of her infection.  She has now been advised to have monthly check ups on her physical health.

Within a week we will have an idea if an infection is behind the recent changes in her presentation.  It could be a temporary dip or further deterioration in her condition.  Once again I have nothing but praise for the way Clee Medical Centre supported us both yesterday.

We woke early this morning and Maureen decided to get out of bed at 4 am, to make sure she wasn’t late for her blood test.  It ‘s difficult for her to grasp that it is a fasting test at 8.15 am as she wants her Tea Boy on duty but I have managed to persuade her that I have not withdrawn my labour and am merely following Doctors Orders.

At 6 am Maureen was livid as ‘thieves have stolen most of her clothes’.  As this is ‘my house’ it seems I’m complicit in the felony and am under attack for my part in the crime.  My efforts at calming her down failed, so all I left her to rant.  I hope she manages to sleep off her diatribe and we make it to the doctors on time.  It looks like it’s going to be one of those mornings and this afternoon might really put the cat amongst the pigeons.

At 1 pm Maureen’s Advocate will be here for the first time.  She will represent Maureen at the forthcoming Best Interest Meeting where her future care and accommodation will be under the spotlight.  It will be interesting to see if Maureen wants to stay in a place where thieves have open access to her belongings.  I sincerely hope that she is not distressed even further by confusion about who her allies are in the forthcoming deliberations about her welfare!

Dementia: It’s Another ‘No-Brainer’

Mixed Dementia

Image result for Kelsang Dorde Picture

There is little doubt that Maureen’s dementia is progressing and the demands on me are increasings.  It is possible there is also a dip in her condition at the moment due to infection: that should be clarified this afternoon at an appointment with her G P.  My priority this morning is to set up rolling respite so that I continue to have the energy to meet Maureen’s needs.  Home-based care is the only option to make sure Maureen is safe and well cared for: I don’t need phone calls telling me the police have found her or seeing her bruised and battered again!   I’m still waiting for details of the action that has been taken against the Care Homes that failed to keep Maureen safe during periods of respite care;.

What I have in mind is to establish a day off every week.  From next week I hope to build around a Wednesday night carer sit so I can have a 24-hour break from my caring role.  The Madhyamaka Buddhist Meditation Centre is little more than an hour’s drive away so my refuge for respite is a ‘no- brainer’ as Kelsang Dorde [pictured above] would say.

We have a busy week ahead with something happening on most days including my 71st birthday on Thursday.  I let an important one pass without any celebrations last year and more of the same is in order in a few days time.  What is the point of causing further distress to someone who no longer has any concept of time, person or place?  As my dear friend, Dorde would say: ‘it’s a no brainer’.

Maureen has been searching for the missing boy again this morning.  Yesterday. she was concerned that her granddaughter had nothing to play with so she put some toys beside her photograph.  She often waves to this little girl, now in her late teens, as she looks out on us from an occasional table in our lounge.

Dementia: Communicating With Carers

General, Uncategorized

Image result for Communicating with carers dementia pictureI have decided to make a copy of my daily posts available to carers on their arrival.  This will give them an inkling of how things have been in the last 24 hours.  I will also suggest how they might approach their time with Maureen. In return, I’m also requesting that they provide a brief summary of how their three hours has gone.

Maureen woke in the early hours of this morning searching for a young boy who she thought had been in bed with her.  At first I though the lad was her son but later she told me it was her grandson.  She searched incessantly for over half an hour and eventually said she must have been dreaming.  I didn’t challenge her reality at any stage of her search and just said I hadn’t seen him.

Once Maureen settled down following her strenuous efforts she was very confused; unsure about where she was and who I was.  An offer of a cup of tea appeared to help matters but she was fast asleep on the sofa by the time I returned to our front room.  These types of incidents are becoming more prevalent and are particularly challenging when you are trying to wake up from a deep sleep.

Our early morning music session on YouTube has brought back a lovely memory.  The first cassette tape Maureen ever bought for me was Working Man:

This song brings back such memories, as Maureen was born in a mining area and tells me she was in trouble as a child for being rude for asking where all the black spots came from on faces of her relatives.

Rita is still singing now and bringing back romantic memories of our early years together.

Update: Maureen woke from a nap at 10 am remonstrating with someone about her finances.  She accused them of stealing all her money and said she ‘hadn’t even got tuppence in her purse’.  It seems it is becoming increasingly difficult for her to distinguish between her dreams and real events.  I will be glad when Girl Every Other Sunday arrives at noon as it is a beautiful day here and I will be able to indulge in some gardening therapy once again.

Dementia: Reliving The Nightmare

Mixed Dementia

I heard Maureen crying at 2 am this morning.  When I asked what was wrong she said: ‘I’ve been having a bad dream’.  Once again she was trying to work out if her only daughter was dead.  After a short while, she said ‘It’s true: she’s dead isn’t she’.

Music is one way of dealing with our grief this morning.

Denise loved Irish music so this one is very appropriate:

She was also was very fond of  Reggae, particularly this one from Bob:

The consensus of opinion is that Maureen’s dementia rules out grief counselling.   To an extent, I can empathise with Maureen’s loss as my first wife died at the age of 29 wasting away with cancer just like Denise.  I know that talking to Maureen about the happy times we spent with her daughter reminds her of a beautiful woman: a chip off the old block!

If distraction is needed this morning our weekly trip to Freeman Street Market should do the trick.  Maureen will be in her element as she chats to stallholders as we buy fruit and groceries for the week.  Then it’s on to Aldi to ensure the in-house chef that cupboards will be well stocked for his exploits.  Clee Medical Centre was excellent again yesterday, with an offer of an immediate appointment for Maureen’s troublesome mouth, which I declined to allow Sleeping Beauty to rest a while longer, so a swab will be taken on Monday.

Oh dear, it may not be the Market after all as Maureen is currently looking out of the window checking on ‘her car’ as ‘she wants to see her mother today’.  She is worried that  ‘if someone takes her car that she wouldn’t be able to go’: another Groundhog Day may be looming as Maureen has no recollection of her mum’s funeral.