Category Archives: General

Dementia: Now It’s ‘Winnie the Pooh’

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I remember when Maureen and I first met, working together at a Community College in Coventry, she would often tell me to ‘lighten up’.  I think she had a point as she joined a common theme amongst my friends: I took myself too seriously.  So my way of coping this morning is to lighten up as Winnie the Pooh takes centre stage and I depart from Monday’s normal format.

I found Maureen in the marital bedroom at 6 am tidying up and saying that ‘all of her clothes stink’.  This is not a new departure it is something that arose several years ago and we have labelled ‘chemical and fragrance intolerance’: a recognised condition in the USA’s compensation culture.  Maureen’s intolerance has had a significant impact on our lives and we seek to make our house fragrance free: if a carer turns up smelling of perfume Maureen is likely to feel unwell.

I have to admit I got it wrong this morning: big time.  I was hoping to find the fun loving Pink Panther instead I found Winnie the Pooh and I forgot Maureen has dementia.  My ‘memory issues’ this morning were associated with trying to use logic and rational thought to resolve the situation: I was wasting my time.  I got it so wrong that Maureen has now gone back to bed irritated by my suggestions about her involvement in freshening up her clothes.

It has not been easy to settle down after my short break.  As I socialised at the Buddhist Centre I found the presentation of a young man fascinating.  This highly intelligent 25 year old was logic and rational thought personified:  although he challenged this assertion.  I really enjoyed his company particularly his ability to correct my discourse when my arguments were open to question.  He may also have been attractive because dementia has robbed Maureen of the ability to use logic and rational thought.

I’m hoping that I can cajole Winnie the Pooh out of bed later as The Pink Panther is far more fun.  All I have to do is remember one simple fact: it’s the dementia stupid!

 

Dementia: A Lighter Moment

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Just before lunch I lost Maureen for a while and hurriedly changed my clothes before hunting her down.  When I returned downstairs there were two blondes sitting on a garden bench as a friendly neighbour had interrupted her lunch to guide Maureen back to the blue garage  door.

I challenged Maureen mid- afternoon to see if she could get a 100 yards down the road without someone from the unofficial Neighbourhood Watch bringing her back.  She was in stitches as she pranced around the road like the Pink Panther.

Just for fun she strayed up a nearby close and one of the team was on her case: out of her house like a shot with her trainers on.  Maureen was nearly falling over with laughter as she crossed the road to join me on our drive and waved to  Mrs B who for once had been rather slow off the mark..

 

Dementia: A Double Wammy

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I’m in it now, as they say, up to my neck. Having the audacity to have a few days respite has given Maureen the opportunity to open up another front on my behaviour as a husband: ‘why did I desert her in her hour of need?’  This theme recurred several times during Saturday and has been followed by behaviour that has once again woken me up early this morning. .

None of this has been helped by the uncoordinated efforts of her sons which have misfired and added to Maureen’s confusion.   However, as I said yesterday ‘It’s A No Brainer’ I need to focus on my responses to Maureen’s presentation.  It is fortunate that I have been able to call upon support from the Home Treatment Team and we are expecting them mid-morning.

The risks of Carer Burnout are well documented and I can feel exhaustion coming on after two days back in the mix: supporting Mrs Dementia is her current mode is unsustainable.   I’m finding it really difficult to adjust to being her husband during the day and a dangerous man at night.  I had been warned that this would happen as dementia progressed because of her past experience of an abusive relationship.  

I’m hoping that some changes in our routine along with additional carer support might help me to ensure my own well-being and  be able to support Maureen to remain in her own home a while longer.

 

 

Dementia: ‘It’s A No Brainer’

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At yesterday’s morning meditation Kelsang Dorde made a simple point: ‘if you can’t change a situation: change your mind’.  He followed it up by saying: ‘it’s a no brainer’ and I teased him afterwards asking if he was quoting from our Spiritual Guide.

There is no doubt that Maureen is struggling to make sense of me leaving her for a couple of days.  Dementia has robbed her of logic and rational thought alongside her problems with short-term memory.  So she has no recollection of how claiming that the sofa is her bed and waking me night after night has exhausted me.  All she can remember that I left her with carers while I went away.

Last night she took to the sofa at 7 pm and woke at 1.30 am frightened by the noise from a dog in the street.  Once again I have struggled to get back to sleep as I have with the early morning recriminations about deserting my wife in her hour of need.

I’m hoping that some early morning meditation will allow me to quieten my mind so that kindness will take over from my current feelings of frustration with the behaviour of others in my absence and on my return.  As Dorde says ‘it’s a no brainer’: I simply have to change my mind rather than wasting my energy focusing on the behaviour of other people.

 

Dementia:Neuroplasticity In Action

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Well I made it to them Buddhist Centre and have had a great nights sleep. I’m blogging from my phone for the first time -so more typos the ever I expect.

At 8.30 I’m  going to see neuroplasticity in action.  My friend Dorde  is teaching the meditation class. He has brain damage from a serious accident. I have just been chatting to Declan his Support Worker about the progress Dorde is making: simply remarkable.

I couldn’t  be in a better place peace, tranquility and neuroplasticity: I count my blessings.

 

 

 

 

 

Dementia: Respite At Last – Madyamaka Bound

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I will be leaving for the Madyamaka Buddhist Meditation Centre in Pocklington for a few days respite at 10 am.   I am extremely grateful to those people have worked very hard, at short notice, to make it possible for me to have a much needed break.

It is possible that Maureen’s current reality will make getting away relatively straightforward. As we have chatted this morning she has been addressing me as a member of staff in her ‘Care Home’.  I’m hoping that I will be able to slip away for a few days break without any upset: always better to look on the bright side with dementia.

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Dementia: Where Is That B***** Plateau ?

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Maureen’s downward spiral just seems to be going on and on and I am still waiting for a plateau as her dementia continues to progress.  We have just been into Cleethorpes on a shopping mission and she looked completely bemused by her surroundings.  For those who have never darkened our door I’m talking about one main street: St Peters Avenue.

It may well be that the corner shop is all she will be able to cope with from now on.  The Avenues was not particularly busy but Maureen thought shoppers were topping up on supplies as it was weekend.  The short trip has clearly drained her and led to feeling uncomfortable: none of her clothes fit.  Thankfully the Agency are sending out a carer in an hour to help resolve the irritation caused by her underwear.  This is an area that I can no longer have any involvement in as she doesn’t want ‘a stranger’ around when she is scantily clad.

Hica, our Agency, are really supportive at the moment and the news on my respite is good. Flexible Sue, our social worker, and the Agency have pulled out all the stops so I can have some much needed time off.  I hope that the remainder of the day is relatively peaceful and I am able to get away in the morning without too much drama.

Dementia: What A Difference A Day Makes

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I realise I was using journalistic licence with my post yesterday: ‘Throwing The Towel In’. What I was articulating was that Maureen’s presentation was changing and I hadn’t got the energy to provide the support she needed.  As my infection now seems on its way out I also realise that I needed to review my approach to being her Care Partner to address the progression of her dementia.

It would take too long to outline the conversations and support I received yesterday as I tried to figure out a way forward on this journey.  Maureen slept for most of the day so that gave me the opportunity to chat things over with several members of our support team.  It also gave me time to respond top supportive comments on this Blog.   It was refreshing to meet Hannah from Hica, our Care Agency, who was pulling out all the stops to resource the care needed for the respite that I was requesting.

I think it is unlikely that Hannah will be able to find the carers needed at such short notice despite her hard work.  I will phone her first thing this morning to assess the situation and adjust my plans accordingly: my fall-back position will be a day trip to Coventry to catch up with my mum and brother to see how their dementia is progressing.

It’s amazing what a difference a good night’s sleep makes.  We slept together from midnight until 6 am: a welcome break from what has gone on in recent weeks.  I have Natalie from the Home Treatment Team to thank for this as our conversation earlier in the evening helped me to ‘get the message’.  At last I realise that I need to check where Maureen is in terms of orientation before I work out how to interact with her: little point in suggesting it is time for bed if she thinks I’m a stranger!  Having such skilled folk at the end of the phone is a luxury I simply couldn’t do without.

The ‘Tea Boy’ has already been on his rounds this morning and the first cuppa has been served.  There is a spring in his step this morning as his nose has stopped dripping at last.

The sun is hiding behind clouds this morning and I’m not sure if the washing will be able to put on the line but gradually I’m beginning to adjust to not knowing what is going to happen next: one of the certainties of dementia.

 

Dementia: ‘Throwing The Towel In’

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kPRft.jpgThis morning I will be informing Sue our Social Worker that the current arrangements for me as a Care Partner are no longer sustainable: my well-being is now at risk.  Maureen’s presentation has become increasingly challenging and I have been further exhausted by her behaviour earlier this morning..

Maureen woke up around 1 am and launched into a personal attack: labelling me as a thief and much more for stealing her car.   The ‘attack’ lasted for some time before she stopped wandering around the house hurling insults in my direction.  It is never easy to get back to sleep after such events and today has been no exception.  Once she was back in bed I alerted Focus (Social Services) to the situation and had a supportive chat with Kirsten.

Maureen woke a couple of times later in the morning: clearly scared out of her wits. Fortunately, I was no longer the enemy and have been able to console her with tea along with reassurance that I will stay by her side and never leave her.  It was very disturbing to see how frightened  Maureen had become.  It is also challenging to know how to provide comfort as I have been warned of the dangers of  physical contact when Maureen is unsure who I am and may see me as yet another potential abuser.

When Sue starts her shift at 8.30 am I will be ‘throwing the towel in’.  I hope I am able to stay focused by reflecting on the poster from the Alzheimer’s Care Resource Center above.  My plan is to take respite (refuge) at the Buddhist Centre in York for a couple of days. If my recovery from this infection allows I hope to be in the company of Kelsang Dorde, Kelsang Chogma (pictured below) and their colleagues very soon.  It will be good to be surrounded by kindred spirits as I seek to rejuvenate a worn out sole and find the energy to continue on this unforgiving journey.

 

Edit: At 8.30 this morning Sue our social worker phoned to say she is already on the case trying to organise the care that I have requested so that I can get the respite I need.

Dementia: A Very Rapid Response

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How fortunate we are to live in North East Lincolnshire where services as so well organised to support Care Partners and those with dementia.  I have just had a call from Rapid Responders to confirm that two team members will be out by lunch-time to make an assessment of our situation.  I was reassured to hear that one of them will be a nurse as Maureen is now feeling unwell and is sleeping on the sofa.

When we decided to move to Cleethorpes many questioned our judgement to uproot from Coventry.  From what I hear from friends back in the land of ‘The Sky Blues’ we are far better off living out in the sticks with a Local Authority geared up to looking after carers and their loved ones.