All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

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.  

Dementia: Help Needed

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At 3 am this morning I contacted Single Point of Access (our 24 hour Help Line) to inform them that I was unwell and would not be able to keep Maureen safe.  They have agreed to alert Rapid Response who will contact us after 7 am to arrange an assessment of our situation.

Maureen says ‘she needs someone to look after her and feels unable to tend to my needs’ as my nose drips like a tap, my head aches and I am unsteady on my feet.  Her confusion is paramount as she tries to make sense of the situation: ‘in a place that she doesn’t know with no staff on duty’.

 My suggestion is she is supported to do what any wife would do when her husband is unwell: ‘help the old man to get back on his feet’.  This would avoid a repetition of the distress that was caused on a previous occasion when she was dropped off at a Day Centre when I was unwell.

I am posting a little earlier than normal this morning as I await from contact from Rapid Responders.

Dementia: Trying To Avoid Carer Burnout

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I am beginning to feel that I’m on ‘Mission Impossible’ here: facing Carer Burnout. Yesterday I managed to have half an hour with Karen from the Home Treatment Team.  I have further meetings planned next week as I try to figure out a practical way forward on this journey that ensures my own well-being.

I will not be posting on any other pages on this blog for a while.

Dementia: I’m Totally Exhausted

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I am totally exhausted after another night of sleep deprivation.  Our day had been relatively good with a positive visit from ‘Flexible Sue’ our social worker.  We chatted openly and honestly and Maureen told me afterwards she ‘liked that lady’.  Sue contacted me later in the day to confirm our meeting to review my Carers Assessment towards the end of July.

It is difficult for me to remember all of the events of the night, and early this morning:  there were so many twists and turns and my recollection of what happened when is hazy.  Once again Maureen decided to stay on the sofa as I retired to bed.  She eventually came upstairs and wanted the marital bedroom to herself.  Her behaviour towards me being in ‘her bed’ was hostile so I retreated to the spare bedroom.  Later in the night she joined me in the spare room.  Then she had periods of restlessness before she returned to bed.

Her attitude this morning has ranged from cool to unpleasant.   It is likely that she is as worn out as me by ‘Musical Beds’ and needs to catch up on sleep.

There is no carer sit this morning.  With Chloe our regular being on holiday the Agency had planned to send someone who was totally unsuitable to our needs.  I will contact ‘Flexible Sue’ as soon as the lines open to see if a sit can be arranged later in the day. It is not going to be possible for me to get through today without a carer sit at some time in the day: I need some time out.

Fortunately I will get some real respite from the challenges that I’m facing here over the weekend.  Jill my sister, and her husband Rob, will be here with lunch on Saturday. Rob has built up a unique business: if he can’t fix a hydraulics problem no-one can.  He has a canny ability to see the wood from the trees.  It will be good to be in the company of kindred spirits who despite considerable challenges within their own lives are never too busy to offer real support to a very tired 70 year old Care Partner.

One positive that has emerged from a difficult night is the thought of moving our bedroom.  The prospect from the spare bedroom is very soothing on the eye: we overlook a golf course and the windows are not leaded.  I think it is worth considering moving so we no longer wake up to the sadness of bungalows across the road where widows have a lonely old life: food for thought on a dismal morning here in Cleethorpes.

Edit at 8.30 am:

Thank goodness for BBC News to remind me of 100 years on from the Somme and here I was wallowing in my own trivial battles: hope I have put that right on my Good Music page.

Dementia: Excellent Support

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I could not have asked for more appropriate support than I received yesterday.  When Gail, our carer, arrived she was so shocked by Maureen’s presentation that she advised me to get her ‘checked out’.  She hadn’t seen Maureen for a couple of weeks and was rather taken aback by this confused woman wandering around our front drive incoherent and looking lost.

My early morning phone call to the Home Treatment Team led to Karen a Mental Health Nurse arriving late afternoon.  Maureen was asleep when Karen arrived and we had a helpful chat until Maureen wandered into the kitchen half-awake from dozing on the sofa.  It was reassuring to hear Karen say that ‘we wouldn’t advise doing anything different’.  She also gave me some helpful coaching on how to deal with some of the issues that Maureen was raising: advising that distraction has its limitations and can lead to frustration when the issues that are raised are not adequately addressed.

Maureen clearly enjoyed Karen being here and once she had woken up was in good form. I listened intently as Karen confirmed her role not shirking the need to deal with sensitive issues of mental health and memory issues.  I’m confident that ‘Sitting next to Karen’ will increase my effectiveness as a Care Partner.

Flexible Sue, our social worker, is due mid-morning for one of her regular visits.  We caught up on Tuesday and she is scheduling a further Cares Assessment as soon as she finds space in her diary.

Maureen is singing this morning and there is no doubt that phone contact with one of her sons yesterday has really helped her mood.  The sun is shining here this morning so on we go with another lovely day pending in Costa del Cleethorpes.  

Dementia: Respecting Maureen’s Reality

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The phone lines were hot yesterday as I kept in touch with professional staff providing ongoing support.   I eventually decided not to seek additional ‘Boots On The Ground’ as Maureen’s focus was changing as the day progressed.  It was helpful that ‘Flexible Sue’ our social worker was back in work and she is making a scheduled home visit tomorrow.

Maureen is now articulating what I had suspected for some time: she is frightened when I am out of sight and doesn’t know where she is anymore.  I realise that this could be a dip in her presentation or a plateau; I’m hoping it is the former.  As my prime focus remains ‘minimising distress’ I have adopted the following ‘Working Position’, which I Emailed to family members and professional staff:

‘We will remain in Cleethorpes from now on.

There will be no more trips to Coventry or elsewhere.

Telephone calls need to be short and sweet: her reluctance to take calls is likely to continue.

Visits need to be in very small numbers for short periods of time.

My Blog details how things are going on a daily basis’.

I’m very grateful to Bill Malley one of my Line Managers when I worked at Coventry City Council for introducing me to the concept of ‘Working Positions’.  They are statements of intent sharing practical solutions to dynamic situations: ideal for dealing with dementia

Dementia: Caregiver’s 10 Commandments

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When you are as tired it is helpful to see a reminder of the basics of being a Care Partner.  I am very grateful to Daz Smith for sharing this on LinkedIn:

 

Dementia: Seeking Boots On The Ground

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Yesterday I received excellent support  from Social Services, Admiral Nursing and the Home Treatment Team.  Today I will be taking up the offer of the HTT to put ‘boots on the ground’.  When lines open I will be asking them to send someone out.  A short while afterwards I will be confirming that our Key Worker is back on duty and will be able to keep to her appointment here on Thursday morning.  Around 11am I will update Peter from Admiral Nursing as we arranged yesterday.

Maureen is in emotional turmoil this morning: it’s just another focus today.  She started off being very upset about her car being used without her permission.  She suggested giving it to her children so they would find it easier to visit Cleethorpes: she has forgotten they are all members of two car families.  I have told her I have removed the rotor arm to make sure no-one can use it – hope she doesn’t twig I haven’t a clue where it is on modern cars.  From now on it will remain on the drive unless she is in the passenger seat.

For the last hour or so she has been on the socks and shoes issue: nothing fits or is comfortable.  Last night she had the same complaint about underwear but my offer to take her to Marks and Sparks this morning has been long forgotten.

Maureen broke down in floods of tears yesterday evening when she declined taking a phone call from her son.  She told me later she daren’t stop what she was doing or she would forget how to bring the washing in and then there would be nothing she could do.  I couldn’t think of a response apart from holding her tight.

I have had a few hours’ sleep in between visits to the loo and Maureen waking for various reasons.  At 3.30 am she talked for some time about her father and what a wonderful man he was.  When this conversation was over I got up to sort more paperwork.  It’s a shame I never got to meet ‘Union Jack’ as we would have had a lot in common.

It looks like being another lovely day here in Cleethorpes and a bit of sunshine always helps us on our journey.

Edit: My mechanic has just told me rotor arms were phazed out in the 90’s: apparently there is no distributor now it’s a coil pack.   I’d better get myself a spark plug lead from somewhere just in case Maureen twigs I’m trying to pull a fast-one.