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: In Safe Hands

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Maureen escapedthe clutches of the local ‘Neighbourhood Watch’ yesterday and fortunately ended up in safe hands. My back had only been turned for a few minutes and she hopped it.  I gave her some time, taking George Rook’s point that she doesn’t want to be treated like a child, then I got on my bike and searched for her in her normal haunts.  As I made my way back home after a fruitless search my Mobile rang with news of her whereabouts.

Maureen couldn’t have been in safer hands with her cousin Terry and his wife Glynn.  Both of their father’s had dementia so they know the condition well.  When Terry picked her up in his car she told him I  was sleeping.  She also said I rarely went out for walks and that was why she was on her own heading into Cleethorpes.  It wasn’t until I showed him the photo of our early morning walk that he realised the extent of her confabulation.

I couldn’t prise her from the sofa again last night when I retired shortly before 10 pm.  She woke around 11.30 pm and could see no reason why I shouldn’t join her in the marital bed.  Before retiring she took off the two pairs of trousers she has been wearing for days and put on her P J bottoms. 

Unfortunately I have only slept fitfully after moving beds: unable to shut down my thinking.  It’s difficult to accept that my few days respite is only a week away as I am feeling weary again from the constant demands here.  

Early this morning Maureen has once again shared her fear of strange men trying to get into her bed.   I have heeded the advice of the Clinical Psychologist from the Stroke Team and am being very careful about my behaviour in the bedroom.  However, despite the messages from my Buddhist friends about attachment it is not easy to Let Go of your wife and focus on being a Care Partner rathet than a husband.

Sue our social worker contacted me yesterday to confirm that the Agency is trying to accommodate a visit to Coventry in a week’s time.  I will be using public transport this time and hope the journey will be restful:  which was hardly the case on my last visit when I had to cope with Maureen’s mood swings whilst trying to navigate busy roads. 

Chloe our longest serving carer returns after her holiday this morning.  I think she will be surprised by the progression of Maureen’s dementia in the two weeks that she has been away.

Dementia: Not Very NICE Theresa!

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Today I have a second message for our new Prime Minister: the Quality Statements for Home Care Workers from NICE do not go far enough:

List of quality statements

Statement 1. Older people using home care services have a home care plan that identifies how their personal priorities and outcomes will be met.

Statement 2. Older people using home care services have a home care plan that identifies how their home care provider will respond to missed or late visits.

Statement 3. Older people using home care services receive care from a consistent team of home care workers who are familiar with their needs.

Statement 4. Older people using home care services have visits of at least 30 minutes except when short visits for specific tasks or checks have been agreed as part of a wider package of support.

Statement 5. Older people using home care services have a review of the outcomes of their home care plan within 6 weeks of starting to use the service and then at least annually.

Statement 6. Home care providers have practice-based supervision discussions with home care workers at least every 3 months.

Have you any idea Theresa of the constant demands that Care Workers face?  They never know what they will find when they open the door of a client.  When they are dealing with dementia they are stretched to the limit with presentation that can change at the drop of a hat.

How on earth do we expect carers to care for the most vulnerable members of our society with as little as one weeks training and supervision every three months?

How do we expect to retain staff on the living wage, zero hour contacts, no time for travelling between calls and no in-service training?

Just one or two things for one of your new Ministers or Jeremy Hunt to consider, Teresa.

I will post news of developments here a little later.

 

Dementia: Sleepless In Cleethorpes

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I think it was Amazing Susan who reminded me a while ago that with dementia there are some things that you never solve.  I’m beginning to think sleep deprivation is now a way of life.  For three lovely nights I thought I had cracked it then ‘wham bam thank you mam’ its back with a vengeance.

When Gilly from the Home Treatment Team was with us at the weekend we discussed sleeping arrangements.  Maureen made it clear that she wanted to sleep by herself in what had been the marital bedroom.  So for three nights things have gone relatively well with Maureen making her way up to her bedroom at various times of  night after ‘resting her eyes on the sofa’.

Early this morning I gathered she was on the move as the Baby Monitor clicked into life followed by footsteps on the stairs.  So I called out to let Maureen know I was in the spare bedroom.  My usual enquiry if she was alright was met with ‘no I’m frightened about being by myself’.  I took a chance and joined her in the marital bed anticipating further rest: how wrong I was.

I hadn’t been with Maureen for long before she began sobbing.  As I tentatively provided physical comfort she told me she was thinking of the death of her baby over 50 years ago.  This is a story I have heard many times as she tries to deal with the way she dealt with her grief.  Her approach of putting on a brave face is similar to how I dealt with the death of my first wife.  Neither of us knew how to grieve when the death of a loved one came so early in our lives.

Tea has been served very early this morning: Maureen is now on her second pot.  She has now moved on to ‘wanting to go home’ suggesting that she needs to see her brother and sister in Nottingham.  My response as always is that we could pop across to the Midlands, walk by the Trent, and visit some old haunts.  Maureen says she is too tired to consider such an idea and I may return to this theme later in the day.  I think a change of scenery, even if it is Grimsby dock, may be just what the Care Partner ordered.  Watch this space……….

Edit: We’ve just returned for a lovely walk in the sun.  Whilst we were out I spotted this beauty: I would never have given up train spotting if I ‘d known there were models like that about!

Dementia: A Message To You Theresa

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While  Maureen and I were chatting yesterday I just happened to mention that we had a new  Prime Minister.  I’m never sure how much Maureen has been following the news but she astounded me by saying: ‘Theresa May – she sounds like a shop assistant but I’m not trying to be disrepsectful to them’.   I know little about the background of our new Prime Minister but I suddenly feared she would do as much damage to our economy that the Grocer’s Daughter (Margaret Thatcher) had done.

This morning I have had another thought  a ‘Specials’ message, something of a warning, to Theresa rather than Rudy:

I think it is time that Social Care was brought back into the Public Sector. I can think of no other way of ending the current neglect of our Senior Citizens.  Just to refresh Theresa’s memory and I speak from personal experience, by raising the following questions:

  • Why do we leave our most vulnerable citizens in the care of untrained staff?
  • Why are Care Agencies being starved of the resources they need?
  • Why are Care Homes being starved of the resources they need?
  • Why is it so difficult to get Continuing Health Care?

The accusations of neglect and abuse of the elderly will continue unless you focus on these issues Theresa.   One of you predecessors like Rudy may end up in jail if we ever get him to The Haigh.  Why not make your legacy that you kept the promise that our Welfare State would look after us from Cradle to Grave?

I will post an update on developments here a little later.

It’s called living, stupid

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A clear and simple message from George Rook: someone you can always depend upon to say it as it is.

georgerook51's avatargeorge rook

Supported self management for people living with dementia

Here’s what I said to a brilliant workshop at National Voices yesterday at the launch of a new project to promote/define supported self management.

So, what about about supported self management for people living with dementia?

Let’s first understand dementia.

Dementia is a collection of symptoms and behaviours resulting from disease of the brain.

The disease is irreversible and decline is continuous though inconsistent, and different for everyone.

Decline can be counteracted in some people through the use of drugs which improve the functioning of the healthy parts of the brain, for a while.

Dementia differs from many medical conditions and diseases in that it can neither be cured, nor its relentless progress stopped. So management is just that…managing life with dementia.

And what is living with dementia?

It’s about parts of your brain ceasing to function properly so you can’t process…

View original post 941 more words

Dementia: The Other Women

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I had a busy day yesterday contactin, or meeting women who are particularly significant as we travel on this unforgiving journey.

I E Mailed Sue our social worker first thing to request a visit to Coventry so that I can catch up with family in ‘Sky Blue Land’.  My mum and brother are having a tough time at the moment: trying to cope with the progression of their dementia.

At 10.30 I met Sadie and Hayley from our Care Agency to record serious concerns about aspects of Maureen’s treatment by their staff.  I have received an unreserved apology and a full investigation will take place into my concerns.  We meet again in a week’s time so they can give an interim report into their investigations.

Later in the morning I met Gilly from the Home Treatment Team and Mel my Admiral Nurse.  I have now grasped that the HTT is a Crisis Intervention Team and Mel is the audience for the support and supervision I need in my role as Maureen’s Care Partner.  We have agreed to meet next week to look at some short term aims and objectives.

On my return home I caught up with Maureen and Charlotte getting along like a house on fire.

In the afternoon I popped in to see Yvonna at Lloyds Chemist to chat over a number of issues.  It is always helpful to run my thinking by such a radical pharmacist.

I realise that I am very fortunate to have such professional expertise at my disposal and with my record, and at my age, there is safety in numbers!

Dementia: Letting Go

minimising distress

This morning I’m very grateful to Kelsang Dorde for his  change of profile picture on Facebook:

He has reminded me of what I have to reluctantly accept.  Maureen has dementia: my wife has gone.  There is no point in trying to get her back: my role as her Care Partner is to minimise distress.

Maureen has often said to me : ‘what’s the plan Action Man’.  Perhaps she needs to replace that with: ‘where’s my gear Batman’.  This morning I have been on my daily task of finding the things she will need when she wakes up and putting them in places where she would expect to find them.  I have hunted down the missing socks, put out clean underwear and the missing slipper is on my radar.  Once tea has lubricated the parts other liquids don’t touch first thing in the morning, she will be able to make a smooth transition into the upright mode.

I can’t even imagine what it feels like if some unkind sole has moved or stolen your gear in the night and everything you need  has gone AWOL.  Batman has to rise early in the morning and do all he can to minimise distress.  Robin is only ever a phone call away with the professional help that is always at hand and I intend to post about this later in the day under the heading of  ‘The Other Women’.

Thanks Dorde for your ongoing teaching.  What a pity I haven’t got one of your meditation sessions to go to this morning to help me to let go of what can never return.  

 

Dementia: My Wife Doesn’t Understand Me

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Maureen has found her own solution to my complaints about sleeping on the sofa:

I think I’ll have to use music to get my point across:

Dementia: Every Picture Tells A Story

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When I arrived home shortly before lunch Charlotte and Maureen were busy chatting in the garden.  I’m not really sure they noticed me taking this picture.  Charlotte is another excellent addition to our Care Team.  I guess she was telling Maureen about her recent holiday in Mexico as I carried on with preparing lunch.

I know that they hadn’t spent all the morning chatting as our ‘cunning plan’ had been carried out.  Three lovely outfits of Maureen’s choice now hang in her freshly aired wardrobe.

Charlotte played her deparure beautifully with: ‘I’ll pop in to see you next week when I’m around this way’.  You would never guess that she is hardly past her 21st birthday when you witness her understanding of dementia and the dignity with which she treats Maureen.

Dementia: Comfort, Cold Tea and Cleethorpes Carnival

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Maureen woke this morning crying that she wanted to go home as she doesn’t know anyone here.  I played it by ‘the book of dementia’ gave comfort and changed the subject.  With cold tea at her side I played on the fact that the one person she knew was letting her down.  What sort of a Tea Boy would serve his mistress cold tea in the morning I posed?  I then requested further training in the art of providing warm tea so the boss could drink my offering before she drifted back into the land of nod.

Once I had lightened things up I plunged into deeper waters.  It’s ‘Carnival Time’ here at the weekend and I suggested inviting folks to share the day with us.  From Maureen’s facial expression this is a ‘no no’ and I think I know why.  My guess would be that Maureen doesn’t want to put me to any trouble hosting visiting parties but it goes deeper than that.  In the last few days I have seen how reluctant she is to be in the company of others as it exposes her poor memory: too many folk are not dementia friendly and make her feel foolish or even that she is going mad.

I need to chat further to professional staff about the dangers of social isolation which could escalate as Maureen’s dementia progresses.  My telephone conversation with Gilly from the Home Treatment Team this morning, will provide an opportunity to discuss this dilemma.   There is no doubt that Maureen still has capacity at some levels but going along with her wishes to keep visitors, even close family, at bay may not be in her best interest.

Edit: I’ve just remembered I met Audrey one of our friends from Short Mat Bowls the other day.  She suggested how welcome we would be if we popped in to see them on any Tuesday evening..  Now I wonder if I can steer our evening walk in that direction tonight?

Further Edit: The other possibility is to persuade Maureen to accompany me to visit Mike, our neighbour, who is in hospital following a heart attack .