Tag Archives: Being Flexible

Dementia: A Break In Hostilities

Mixed Dementia,

Image result for Aggression Dementia Picture

Truce broke out in the ongoing hostilities here yesterday as Maureen and I spent a peaceful day together. The day got off to a good start as for once we woke up together in the same bed. This meant early morning tea took place in the comfort of the marital bedroom.  Maureen has a cunning way of requesting more lubrication by singing ‘I like a nice cup of tea in the morning’.

Just to put the record straight, sneezing was the main activity in the bedroom as both of our colds said ‘good morning’.  This again gave me an opportunity to show TLC by providing an endless supply of tissue. Maureen remained in good form as we moved downstairs for breakfast.   A couple of hours later she was asleep when Girl Saturday arrived.: on waking her response was remarkable.

I had changed a Carer Sit call to a Domestic as we were in need of assistance with ironing and cleaning.  As I pottered in the garden I saw Maureen show how pleased she was to see Girl Saturday, ironing in the kitchen, greeting her with a hug along with a beautiful smile.  Two hours later ‘the girls’ had made the house cleaner and tidier.  Such an about turn by Maureen who often complains that the carers have made her work!

We spent the afternoon dozing in the lounge.  As we enjoyed an early evening stroll around the block the chilly air convinced us that we had made the right decision to cancel our chauffeur, stay local and rest, rather than enduring a long car journey to catch up with family.

Maureen went to bed at seven last night and it was half six this morning before the Tea Boy was on duty.  As I type this post I’m awaiting a musical hint that her cup needs replenishing!

Dementia: Fear, Hallucinations, and Recriminations

Mixed Dementia,

Image result for Fear Hallucinations recriminations Dementia Picture

The last 12 hours have been the most challenging I have experienced since Maureen’s diagnosis of dementia.  I have tried everything I know and in the end, I have left her to rant.  This morning after a couple of hours sleep I have woken up to someone who has been too frightened to go to the toilet during the night. However, following my guidance to the utility room she has immediately returned to the attack.

I have already alerted Single Point of Access to the need to speak to our Duty Worker this morning.  We will need to rule out a UTI and I will contact our Medical Centre when they open for business.  Unfortunately, the dip test is only a guide and our G P recommends waiting for the Lab Report before I battle with Maureen over further medication.

Things went from bad to worse yesterday. the beauty therapist phoned to cancel her visit as she had double booked and decided to refer us to a colleague.  Maureen was very unhappy that I left her with Girl Thursday as I went out to meet our Key Worker to review our Care Plans under cover of a shopping mission.  As I left my disgruntled wife said that she ‘might not be here on my return’.

Despite following helpful suggestions to address Maureen ‘wanting to go home‘ in the afternoon and evening made little impact.  Nothing shifted her from the position that ‘she didn’t live here and I was keeping her here against her will’.  Towards midnight her fear was palpable as she had ‘nowhere to sleep, no female company and lots of strange men around’.

This morning I’m being accused of all sorts of things and ‘should be ashamed of the games I’m playing’.  There are links to the war and my parents being ashamed of my behaviour.  I’m finding it difficult to keep up with Maureen’s reality and I’m trying to stay out of the firing line.  My feeling is that she is waiting for an opportunity to escape from ‘her prison’ and it is one of those occasions where I will let her run it off.  Such positive risk taking is preferable to creating further distress by locking her in and treating her like a child.  It will be interesting to read the Occupational Therapist’s view on this matter!

To Do List This Morning:

  • Progress checking for UTI
  • Seek advice from Maureen’s Care Coordinator on how to respond to her current presentation.
  • Request our Key worker to put yesterday’s plans on hold and arrange immediate additional support.
  • Relax in the Sauna and Spa at the Leisure Centre.

Footnote: Sincere thanks to those who used my Blog and Twitter to support me during a difficult night.  It’s just Amazing how much Blogging helps when you are dealing with dementia.  I wouldn’t want to risk any further Safeguarding Issues by naming anyone!

Dementia: ‘I’m Not Lost!’

Mixed Dementia, ,

Image result for I'm not lost Picture

Maureen has thrown down the gauntlet about being allowed to be out on her own.  She was reluctant to accompany me to the corner shop yesterday afternoon and when I returned she had gone out.  When I went to find her she said ‘why are you looking for me I’m not lost?’ The interesting thing is that she was walking around the Court that I had encouraged her to follow the previous afternoon.  I think I now have to pluck up the courage to let her go off by herself and wait in the house until she returns.  I’m wondering if it is a good time to suggest using the Digital Tracker that I bought some time ago and Maureen declined to use.  I also have a similar dilemma over changing our sleeping arrangements’

I’m not sure if sleeping on a single bed in the lounge is achieving anything.  What it may be doing is encouraging Maureen to sleep on the sofa rather than retiring to a bedroom. My inclination is to take the bed back upstairs – yet again – and see what happens.

Maureen may not feel that she is lost when she is walking out by herself but I often feel spoiled for choice in how to respond to her presentation.  My Admiral Nurse is on holiday at the moment and I have chatted to one of her colleagues a couple of times already this week.  She has suggested reframing my suggestion that we need a holiday.  If Maureen takes up the bait it would be interesting to see how we cope with a couple of days in new surroundings.  The plan is to be on holiday close to the family members in the Midlands who Maureen is crying out for more contact with: predominantly her granddaughter.   What a shame it will not be possible to meet her parents: I’m sure ‘Union Jack’ and I would have had lots to talk about and I would have loved to have met his ‘Diamond Lill’.

While I’m on the subject of holidays we will need a World Cruise to thank all the people who support us via this blog.  I’m particularly grateful to Di Brooks this morning as she suggested taking an Epson salts bath which has been so refreshing.  I would recommend anyone to read her Blog where she shared her experience of being a Care Partner to her late husband so openly.

It is my six weekly appointment with my Counsellor this morning.  Ironically it is exactly 24 hours away from the Best Interest Meeting.  How fortunate I am to be able to chat over the challenges in my life with someone who has such an extensive understanding of dementia.

 

Dementia: It’s Good News Week

minimising distress, , ,
  • Maureen will be overjoyed this morning with good news from Girl Monday.
  • The Best Interest Meeting is now only days away.
  • Spring is here and Maureen wants to be out in the fresh air.
  • Maureen went for a walk on Saturday and Sunday and found her way back home.
  • The repainted green doors are helping Maureen find her own way to the bathroom.
  • Reorganising our bookcase is providing another creative outlet for Maureen.
  • Professional advice is pending to make our house, even more, dementia friendly.
  • I am learning to sleep when Maureen rests thereby easing my sleep deficit.
  • I have found a Care Home that may be suitable for a Respite Break.
  • Family members are reviewing their availability for providing additional support.

I had a great day yesterday watching the Sky Blues win the Checkatrade Trophy on TV. Coventry is often seen as the Phoenix rising from the ashes.  Perhaps dementia has been our blitz and we can find a way to rebuild our lives.  How fortunate that Thursday offers an opportunity for such discussions.

Oh, I nearly forgot about the Roller Coaster:  it had a day off yesterday!

Dementia: From The Inside

Mixed Dementia, ,

My Support Worker from the Grimsby Branch of the Alzheimer’s Society sent me this video a few days ago:

As I return to posting on this Blog following my self-imposed Gardening Leave the video reminds me that dementia is frequently giving Maureen a torrid time.  Therefore, my role as her Care Partner is to attempt to minimise her distress.

Dementia: My Two Top Women

Mixed Dementia,

I know I’m a little late for International Women’s Day but that is deliberate because tomorrow is my mum’s 96th birthday.  This is my musical message to my mum:

Maureen will be accompanying me tomorrow on a trip of over a 100 miles to see the Birthday Girl.  This is my musical message to my dear wife and reflects her approach to living with dementia:

 

Dementia: Please Cut Us Some Slack!

Mixed Dementia

Image result for Cut Us Some Slack Picture

Today marks the third anniversary of Maureen’s stroke: the culmination of a catalogue of errors.  It was three days after presenting at Accident and Emergency at Grimsby Hospital before she was sent to the Stroke Unit at Scunthorpe. On arrival, we were asked ‘why have they sent her here?  It’s too late for us to do anything’.  The window for thrombolysis had long been shut and our journey was rather pointless.  When I look back this was the final straw in missed opportunities where few had been interested in listening to my concerns about Maureen’s faltering memory.

Maureen now has a diagnosis of moderate to severe dementia.  She has recently been confronted with the nature of her condition: despite choosing to be in denial for three years.  I’m not sure anything has been gained by trying to bring her out of denial – the process has certainly scared the living daylights out of her, as has preparation for the Best Interest Meeting concerning her future care and accommodation.

Sometimes Maureen’s reality is I’m seeking to have her taken in a Care Home because I want all of her possessions for myself.  My reassurances fall on deaf ears when the going gets tough. Therefore, I am requesting that we are left alone until Monday 13th of March and the procession of professional staff to our home is temporarily suspended.  The one exception being our Key Worker who Maureen calls ‘Ginger’ as she likes him to pop in to see how things are going.  We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

Monday the 6th of March is my brother’s birthday.  He has Alzheimer’s and is on Continuing Health Care in a Nursing Home.  Three days later it is my mother’s birthday. She has vascular dementia and is in a Care Home.  Next week needs to be set aside so that our chauffeur can take us to see our loved ones.  Dementia is such a significant factor in our lives and a compassionate approach is needed at this moment in time, rather than trying to bounce us into the procedures of the Mental Capacity Act!

Footnote: This post is being forwarded to all professional staff who are providing support to us on this journey.  I will also copy to Maureen’s G P as I seek his permission to give her prescribed medication covertly.  The ongoing battle to persuade her to take tablets is draining!

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Dementia: Action Man Returns

Mixed Dementia, Uncategorized,

Image result for action man picturesMaureen often asks me: ‘what’s the plan Action Man?’  So I took on the mantel yesterday in an attempt to move things in a positive direction.

Once it was confirmed that Maureen had a UTI  I  encouraged the Practice Nurse to outline a formula for recovery:

  • Antibiotics to be taken for a week.
  • Eight glasses of water to be drunk daily.
  • A shower or a bath to be taken three times a week

This formula complemented our early morning pledge:

  • To sleep together in the marital bed at night.

Girl Monday morning also gave me some much-needed coaching:

  • To stop giving Maureen options as she can no longer make choices.

The support we received from professional staff yesterday was of a really high standard.  Early in the morning, a Duty Officer from Social Services contacted me as our Key Worker was not working.  Within a short period of time, she managed to secure and arrange two-hour afternoon carer sits for the remainder of the week.  The added bonus being that this additional support would be with known faces.  Throughout the day other professional staff weighed in with support and advice.

It will take a couple of days before Maureen’s medication starts to kick in.  With luck, things will then move in a positive direction – providing ‘Action Man’ remains well enough to deliver the goods!

Dementia: Oh What A Night

Mixed Dementia, ,

Image result for Oh What A Night Picture

Yesterday morning and afternoon had been very challenging as I tried to deal with Maureen’s constantly changing presentation.  As the evening progressed and none of my normal routines were having any real effect I sought advice from staff on the Konar Suite.  I often find that the sound of a soothing voice gives me the impetus to change my approach.  After my phone conversation, further music onYouTube had a positive effect for a while before Maureen handed me a Wild Card.

There were no stars in the sky at 2 am as I tried to distract Maureen’s, yet again, by responding positively to her request to get some fresh air.    We didn’t stay out for long as there was a cool wind and we were both tired.  However, it took a further half an hour of YouTube on our return before I was able to persuade Maureen to accompany me to sleep in the marital bed.

This morning I’m hoping that we will be able to establish if Maureen has a UTI.   A recent purchase should help to preserve Maureen’s dignity as she seeks to provide the necessary sample.  Once again Girl Monday/Friday hit the nail on the head on her last shift encouraging a focus on protecting Maureen’s dignity and independence.  I’m so fortunate that I have sat next to Girl Monday/Friday (Nellie) for almost three years now: she is my immediate mentor when it comes to Maureen’s care.

We are out of the blocks with a meeting of the Multi-Disciplinary Team on Thursday morning with only Mental Health needing to confirm their availability.  The Best Interest Meeting is still some time away and in the meantime, we need to ensure that our approach to Maureen’s care is appropriate and cohesive!

Dementia: Talk the Talk and Walk the Walk

Mixed Dementia, Uncategorized,

Image result for walk the walk pictures

I’m often too tired to think straight when it comes to the crunch.  On some days I hardly get any sleep on others the challenges come so thick and fast I don’t know which way to turn.  When Maureen threw out the challenge of being allowed to wander yesterday I immediately ran for the cover of requesting another assessment by Occupational Therapy.  Later in the day after several conversations, a way of preserving Maureen’s independence emerged.

To take a step to release Maureen from her bonds we all need to walk the walk: whenever she wants to go out we accompany her.  The days of restraining her freedom have to be recast as joining her on her right to roam.  This will allow her to fulfill her doctor’s advice to ‘keep on walking’.  When I look back this is a simple solution: rather than calling her back I need to keep my training shoes on and be prepared to step it out whenever my wife beckons.

When I was struggling last week for a ‘one liner’ to address Maureen’s concern about our Wednesday Night Sitter the Local Branch of the  Alzheimer’s Society came to my rescue. They provided sound support again yesterday as did Maureen’s Care Coordinator. From now on we are going to talk to the talk of person-centred support and walk the walk!

Our Care Agency also walked the walk by arranging for Girl Monday to be here today as Girl Wednesday is off sick for the next week.  They understand the need for continuity and pulled out all the stops to get Maureen’s favourite carer here today.

In the evening our Decorator trod an excellent path as he popped in to see us.  It’s fantastic how people call in just when you need (ask) them!  He stuck to our rehearsed script and will return shortly to refresh the kitchen.  Within a few weeks, it will be easier for Maureen to find the downstairs utility room and I wouldn’t be at all surprised if there is sufficient paint left over for our bathroom door to also be painted olive green. While he is working upstairs I’m sure he will suggest that our bedroom door might need refreshing in a suitable colour – I’m sure you follow my drift!

Folk music has been ringing out from YouTube this morning and Maureen is in great voice.  She will be delighted when Girl Monday shows up in a few hours.  I will leave the girls to catch up so that I can progress some important financial business to prepare for what lies ahead on this unforgiving journey.