Dementia: Respite Begins Tomorrow

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Image result for Respite Starts Tomorrow PictureAshgrove Care Home are not able to carry out their assessment of Maureen until 8.30  tomorrow morning.  This will then give me a couple of hours to try to personalise her room while she is being looked after by a carer.

I am awaiting confirmation from the Home Treatment Team that they will be able to provide support to ease Maureen’s transition into Ashgrove before noon.

I have had a long conversation with the Administrator of the Home this morning and  agreed that Maureen will be admitted initially for a week.  Our discussions have reassured me that Maureen will be in capable hands while I try to get some much-needed rest.

Dementia: Early Morning Update

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3.00 am

I have just put in a call to Single Point of Access requesting support in the morning to place Maureen in Ashgrove Care Home for a period of immediate respite.  This request will be on our social worker’s screen as soon as he switches on his computer this morning.

Maureen has been awake for about an hour totally refreshed after being asleep from early evening.  I crawled into bed around nine feeling exhausted after another day of trying to lift the spirits of someone who is frequently in despair.  She stood looking forlorn in the kitchen yesterday evening saying: ‘I’ve forgotten my name’.  This follows on from a comment the day before that she ‘couldn’t remember how to do anything’.

When I took Maureen a cup of tea this morning she thought I was her dad.  She told me I was her hero for taking her on such wonderful holidays to the Isle of Man: I have never been there!

It was a stroke of luck that I visited Ashgrove yesterday following positive reports on the place.  It is on our doorstep but I was aware that it had been in Special Measures so I had not darkened their door. I’m glad I did as the place has been transformed since I  visited Maureen’s uncle there at the end of last year and they have immediate avilability for respite.

If I don’t get some quality sleep soon I will keel over and any involvement in where Maureen is cared for will be out of my hands!

Footnote: My status changed at 4 am when Maureen added this to our shopping list on the whiteboard: ‘HONEY FOR GRANDAD’.

Dementia: On Target? (Week 3)

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I have decided to adopt a new Working Position as I strive to do a good job as Maureen’s Care Partner:  Accept What You Can’t Change and Try To Change What You Can’t Accept.

Yesterday morning was a classic as I tried to nudge Maureen in the direction of a shopping trip. As you will see from below she eventually made it abundantly clear that she didn’t want to go into Grimsby to look for suitable clothing or any of my other suggestions.

The upshot of Maureen’s reluctance to go shopping is that she will continue to wear the same pair of trousers throughout the day and night.  It also means that she will not be wearing her wedding ring.  As it was our wedding anniversary yesterday I took her ring out of the box where it had been safely stored and placed it on her finger.  However, without a keeper ring (one of our reasons for a shopping expedition) it is now back in the box for fear of it  going the same way as her engagement ring – missing.

The other thing I have given up on is spending any more time looking for immediate respite in local Care Homes.  My sobering experience on Thursday convinced me that Lindsey Hall Nursing  Home is well worth waiting for.  Therefore, I have to find ways of avoiding Carer Breakdown until Day Care becomes a reality. Fortunately Maureen’s sons are coming to my rescue with support so that I can visit my family in Coventry.  I’m also hoping to resume attending local Tai Chi and Meditation Classes in the coming week.

With my conscience eased with plans to see my mum, and my body and mind in a better state, I hope to sleep a little easier until our aspirations concerning Lindsey Hall become reality.

This morning has started in a familiar fashion with hiraeth dominating Maureen’s thinking.  I have to accept that there is little I can do about ‘wanting to go home’ apart from applying TLC and making her first cuppa of the day.

 

“Diagnosed with Alzheimer’s or another dementia”

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Even more excellent work from Kate Swaffer.

Kate Swaffer (she/her) Kaurna Country's avatar

Released 15 September 2016 Released 15 September 2016

The book Diagnosed with Alzheimer’s or another dementia, co-authored with Associate Professor Lee-Fay Low was released officially on September 15 and has been well received.

Professor Henry Brodarty wrote the Foreword for it, which I am sharing here:

Thank you Lee-Fay for the shared twelve months we spent working on this book; it was truly a joy to work with you.

Thank you Henry, for your generous Foreword.

Most of all, my sincere thanks to all those people who agreed to be interviewed or answered our questionnaires to inform this book; without you, this book could never have been as well informed.

“Dementia is never one person’s illness. Its ripples spread wide enveloping family, touching friends and bumping up against professional services and care. Dementia can be cruel – hard for those affected and sometimes even harder for care partners. When Alzheimer’s and other dementia came out of…

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Dementia: A Lucky Musical Break

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I heard Maureen crying  on the Baby Monitor at 4 am this morning so I picked up my pillow and joined her in the marital bed.  As I lay down she told me that she thought I was in bed with another woman and was going to leave her. I decided to ease her concerns by singing her a Billy Fury number:

A little later on I went downstairs and put Willie and Kris on my Tablet:

Then my lucky break: this number from the Bee Gees staring up at me from my Playlist:

Yes today is our Wedding Anniversary: neither of us are certain how long we have been married – I think it is 18 years today ( I would need to check).  However, I do know I had to serve a six-year apprenticeship before Maureen would let me take her hand!

Dementia: Chlorine Is Preferable To Urine

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Image result for Nasty smell pictureI actually made it to Cleethorpes Leisure Centre yesterday morning to self-administer a bit of TLC to my tired body and mind.  The aroma in the swimming pool, sauna, and spa, was a pleasant relief from what had accompanied me on my visits to Care Homes the day before: chlorine is preferable to urine.  However, it wasn’t just the smell that put me off; it was the look  of hopelessness and despair on the faces of residents.

Maureen would have hated being incarcerated in any of the places I visited on Thursday.   Her life expectancy would have been months in any one of those Homes – she would have given up: feeling she had been abandoned and deserted in undesirable surroundings.   Although they are only the tip of the iceberg I have decided to call a halt on looking at other Care Homes in the area.  There seems little point in spending further time looking around when Lindsey Hall Nursing Home ticks all the boxes:  my task is to remain patient and find ways of coping until Day Care becomes a viable option.  This means taking every opportunity to have a break from my duties as a Care Partner by finding regenerative activities during daily Carer Sits.  I will post what I have been up to on this front on a daily basis:  it’s one of those occasions when actions will speak louder than words!

 

 

Dementia: Happy Birthday Son

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Steven my only son is 36 today.

He lives in Chester and I haven’t seen him for a couple of years: yet another casualty when dementia is the elephant in the room.

A day trip on the train beckons.

Why is organising even a day’s Respite so difficult for any Care Partner?

 

Dementia: A Sentence Of Hope

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As I looked at my Inbox at the end of a very harrowing day there is was a sentence of hope:

Hello,

Would you be able to come to Lindsey Hall on Friday 30th for around 11 to complete the assessment?

Claire

This message from the Dementia Manager at Lindsey Hall Nursing Home helped me to put my day into perspective and remove the bad smell still in my nostrils.  I had become despondent following brief tours of three options for immediate Respite.  They all had that distinct smell, and look, of prescribed disengagement.  I had returned home at the end of my stint reminding myself never to put Maureen into such places.

I have had a reasonable amount of rest in the last 12 hours.  There is a small spring in my step this morning because of light at the end of a very dark tunnel.  In the next few weeks I have to become ‘Patient Paul’ and work with Claire to ensure that Maureen enjoys a smooth transition to becoming  a resident at Lindsey Hall Nursing Home.  How fortunate we are that such a resource is on our doorstep!

 

Dementia: Seeking Immediate Respite

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I now realise that the only way I’m going to ger some quality sleep is to be in a separate place to Maureen for a while.  It is now approaching 5.30 am and she has been up for an hour following on from  incidents earlier this morning.  Sleep interruption is becoming the norm  and I have almost forgotten what it is like to enjoy quality rest.

When I speak to our social worker later on I will be requesting immediate respite.  I  need some rest if I am to have the energy to be Maureen’s  Care Partner: sleep deprivation is torture for anyone.

Dementia: Sleep Interrupted Again!

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Image result for Sleep interrupted again pictureJust after midnight Maureen appeared at my bedside and woke me up.  She had come looking for me after choosing to sleep alone in the marital bed.  It was clear that she was very frightened and confused by the events of the day: struggling to make sense of where her brother had gone and why we hadn’t all gone to sleep at her Aunty’s.  I joined her in the marital bed for a while but couldn’t sleep.  I lay awake thinking how plans that had emerged from my meeting with our Social Worker would not come to fruition.

Gary and I had hoped that Lindsey Hall Nursing Home would be able to take Maureen for a weeks Respite on Monday 3rd of October.  I quite understand their reluctance to come to my rescue and give this exhausted Care Partner a much-needed break.  Claire, the Dementia Manager, is taking a very responsible approach to Maureen’s introduction to Lindsey Hall.  As she says we want to help but need have to tread very tentatively and attempt to build up Maureen’s trust.

Claire has only met Maureen once but she has made a very important point about Maureen’s capacity fluctuating.  Some say that she is at the most difficult stage of dementia; with periods of lucidity within her presentation: don’t I know it!  However, her inability to apply logic and rational thought provides a very challenging context to any form of negotiations.

I have to be patient and fully understand the need for a cautious approach to Maureen’s introduction to Lindsey Hall.  Claire suggests a period of Day Care in a month or so when the Home begin to get up to speed.  This seems, to me, a very sensible approach with an opportunity that is too good to miss for a positive solution to much-needed respite.

As soon as Social Services open for business this morning I will be on the phone arranging a meeting with Gary to consider how we can organise alternative Respite for a week on Monday.  It’s now just after 2 am and Maureen is shouting for her mum and looking for missing footwear.  This cannot continue……..including Blogging at this time of the morning!