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: We’re Struggling This Morning

Mixed Dementia, ,

Image result for It's A Struggle Dementia Picture

We’re struggling this morning or as my dear old mum would say ‘we are in the wars’. Maureen is feeling dizzy and is very confused.  She woke at 3 ‘o’ clock concerned that she was late for an appointment.  Two hours later she was wondering if her dad had gone to join her mum in Nottingham.  Early morning confusion is nothing new but she is also feeling generally unwell and dizzy.  If she doesn’t feel any better when she next wakes I will seek medical advice.

I’m far from in good form myself with pain in my legs and back continuing to interfere with my mobility.  Unfortunately,  Maureen and is picking up on my mood without understanding the reasons for my grumpy demeanor.

We will continue to be in the wars here unless I change my battle plan.  Now the Best Interest decision has been taken and Maureen will be staying at home I have to get my act together.  I need a Simple Plan that is based on a realistic appraisal of our situation.  I have to move out of denial and make realistic decisions that are attainable.

My first priority is to get out of pain by carrying out the exercises the physiotherapist gave me over two months ago.  Once the pain subsides I hope to be able to think clearly about how to simplify our lives and stop wasting time on trying to recreate a former lifestyle. Before I undertake any further activities I need to ask a fundamental question: is this a sensible pursuit at this moment in time?

There are two immediate steps I’m going to take on my Simple Plan.  Firstly, to only post on this Blog on Monday, Wednesday and Friday’s for a while.  Secondly, to review my approach to gardening by buying plants rather than attempting to germinate them from seeds.  Hopefully, as my pain subsides I will make real progress on simplifying our lives.

Update: By 8 ‘o’clock Maureen seems fine as we take breakfast looking out of our patio doors onto our back garden.  We have decided to spend more time in this part of the house looking at our colourful cottage garden rather than the road and bungalows that are the prospect from the front of our house.   As my friend Kelsang Dorde (pictured below) from the Buddhist Meditation Centre at Pocklington would say: it’s a no brainer!

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Dementia: A Rude Awakening

Mixed Dementia

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The visit of my eldest daughter and her family yesterday gave me a reality check which I turned into a rude awakening:

  • I can no longer be the perfect host and provide homemade food for visitors.
  • I am no longer able to keep the house clean and tidy.
  • I need to do something about the constant pain in my back and legs.
  • I should not be having discussions with builders when we have visitors.

I will be apologising to our visitors this morning for getting it wrong yesterday.  They had told me ‘not to bother about food as they would go to the chippie’.  I had soldiered on in denial trying to return to the good old days.  To make matters worse I then rushed into discussions with a builder about making our house suitable for our needs.

Our Key Worker has arranged to visit in a couple of weeks to review our Care Package.  I need to think very clearly about the help we now need and how our house could be made more dementia friendly.

The Easter holidays will need to be a staycation: Maureen current energy levels and my aching body do not need long car journeys.  If we have further visitors over the holiday period I need to remind myself of yesterday’s ‘rude awakening’ and not get carried away trying to reconstruct the good old days!

Update:  Two hours after I posted the above Maureen kindly brought me a mug of tea.  It was rather strong with two tea bags in the mug and an additional four on the tray.  This is the first time she has boiled the kettle of her own volition for some time and is a further reality check on the progression of her dementia.

Demantia: Natural Distractions

Mixed Dementia,

As Care Partners we are advised to distract and redirect our loved ones whenever they are distressed.  Girl Friday always provides the necessary now as she blooms in her first pregnancy.  Baby talk is thick in the air when she is around to take Maureen’s mind off packing to go home or her latest focus.  Fortunately, my eldest daughter and her family are arriving at noon and that should shift Maureen from her preoccupation about someone falling down the stairs and needing help.

It is difficult to know if the accident on the stairs is a dream or hallucination.  My guess is that this focus has come from the visit by the Occupational Therapist earlier in the week and the impending stair rail.

Music continues to be a regular tool of distraction and if I put on ‘the little girl’ Maureen is transfixed:

I hope to contact Caoimhe and tell her how much we enjoy listening to her singing.  The story of Grace is new to us both as we know little of this period in history: rather strange when you consider our surname!

Dementia: Positive Risk Taking With An Emerald

Mixed Dementia

Early yesterday afternoon Maureen said: ‘you have locked me in again and I will hate you until the day I die’. This was not the first time that she has reacted strongly to finding the key turned in our front door so I promptly opened it and let her go.  I hurriedly got on my bike and followed her at a distance watching her talking to a neighbour who redirected her back home.  On her return, she was a different woman:  I was her friend and she was feeling liberated that she had been out by herself.

Later in the afternoon, I took positive risk taking to another level.  Rather than follow her as soon as she ‘escaped’ I gave her 15 minutes as I nervously sat on the edge of my seat counting the seconds.  As I got on my bike she waved to me as she turned into a nearby close.  I followed her at a distance silently encouraging her as she found her way home.  When we caught up with each other on our front drive I hugged her with congratulatory tears in my eyes – she thanked me for being such a good man.  She told me that she had waived to a man with white hair because it might just have been me!

I haven’t gone native or ‘lost it’ in my approach to Maureen’s liberation.  It is something I  have discussed extensively with professional staff and am using my judgement as I open the doors to freedom for my wife.

I also raised another important issue with my Admiral Nurse when we met yesterday.  I wanted to place Maureen within Teepa Snow’s GEMS model.  I eventually concluded that if she was anything she was Emerald:

‘Emerald ~ Green and On the Go With a Purpose ~ Naturally Flawed

  • Sees self as able and independent, with limited awareness of changes in ability
  • Lives in moments of clarity mixed with periods of loss in logic/reason/perspective
  • Understanding and use of language change: vague words and many repeats
  • Cues and support help when getting to/from places and doing daily routines
  • Awareness of time, place, and situation will not always match current reality
  • Strong emotional reactions are triggered by fears, desires, or unmet needs
  • Needs to know what comes next: seeks guidance and assistance to fill the day

I am flawed; it is part of being a natural emerald. I tend to be focused on what I want or need in this moment and may not be aware of my own safety or changing abilities. I can chat socially, but I typically miss one out of every four words and cannot accurately follow the meaning of longer conversations. I won’t remember the details of our time together, but I will remember how your body language and tone of voice made me feel. I may hide or misplace things and believe someone has taken them. My brain will make up information to fill in the blanks, which makes you think I am lying. If you try to correct me or argue, I may become resentful or suspicious of you. I am not always rational, but I don’t want to be made to feel incompetent. My brain plays tricks on me, taking me to different times and places in my life. When I am struggling, I may tell you, “I want to go home.” To provide the help and assistance I need, you must go with my flow, use a positive, partnered approach, and modify my environment’.

Teepa is an amazing woman who encourages Care Partners to focus on capabilities and I’m sure that with careful positive risk taking Maureen will continue to shine!

Dementia: I’m Counting My Blessings

Mixed Dementia,

One week has passed since the Best Interest Meeting that considered Maureen’s future care and accommodation.  The decision for Maureen to stay at home was one that I welcomed and I doubt there was any dissension in the room.  Unfortunately, it is no simple matter to secure wall to wall care for 72 hours to give me long weekend breaks once a month.  I have now accepted that my plans to have three nights away in a weeks time are not going to happen so I will be seeking additional carer sits with known faces from next week.

Sorting out my long weekends is going to take some time but there have been some really positive developments this week:

  • Occupational Therapy involvement is going to be ongoing with a hand stair rail and aids to make bathing easier already on order.
  • My meeting with a Carer Support worker went well yesterday.  This emotional and practical support will now be ongoing.
  • This morning will be the first of fortnightly meetings with my Admiral Nurse to review how things have gone and plan ahead.

There is no doubt that our Multi-Disciplinary Team has been very thorough in attempting to provide support that is appropriate to Maureen’s current presentation.   We are very fortunate to live in an area of the country where there are genuine attempts to support carers and their loved ones.  Once again I count my blessings over our decision to move to North East Lincolnshire!

Dementia: Pie In The Sky

Mixed Dementia

Image result for Pie in the sky pictureIt’s beginning to dawn on me that the idea of having a long weekend break this month is pie in the sky.  None of our usual Care Agencies are going to be able to provide the 72 hours of consecutive support that Maureen would need.  It would be unwise to go further afield and leave Maureen at the mercy of unknown carers.

In my blog yesterday I explained my reluctance to go to the fallback position of putting Maureen in a Care Home. Unfortunately, her family made it known at the Best Interest Meeting last week that they are unable to lend a hand.  Therefore,  a couple of days away together in an adult only accommodation might be the only way of getting a break.  I will explore this possibility at the meetings that are scheduled to take place today and tomorrow.

Maureen eventually lost her patience with our visitors yesterday and reared up on the Occupational Therapist with a diatribe that didn’t quite make sense.  Her Care Coordinator sensibly called time on their visit at this point. This was a rather unfortunate end to be an initial exploration of our set-up here that convinces me the OT will be a force for good in out lives.

Maureen also reared up on me just before she turned in for the night; hurling blankets at me because she was frightened that ‘a boy was going to be in her bed again’.  She doesn’t appear to be frightened this morning but is holding onto a photo of a little girl along with her mum and dad.  If only the little girl (her daughter) was still alive Maureen would be a very different person trying to make sense of her dementia and the infrequent visits of the remaining members of her family.

Dementia: Respite In A Care Home – No Thanks!

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Fire at a care home, Cheshunt, Hertfordshire

If none of our local Care Agencies can provide staffing for a 72 hour period then an option would be to put Maureen in a Care Home for Respite.

The article below, which I have reproduced with the with the kind permission of Roy Lilley, convinces me that this is a rather risky option:

News and Comment from Roy Lilley
Did you watch the TV reports of fire ripping through the roof of the Cheshunt care home?
People have lost their lives, families have lost loved ones and 20 people have lost their homes.
I watched the evacuation.  Frail elderly people bundled into the street, wrapped in blankets.  Walking frames, wheelchairs.  They looked, to me, more like the residents of a nursing home than a care home.
There was a time when relatively able, senior citizens, would sell-up and move to a care home.  They would have the company of likeminded folk, meaningful daytimes and a bit of support if they slipped in the bath.
The tectonic plates of eldercare are shifting.  
As ‘care home’ residents lose acuity they often need nursing care and would benefit from being transferred to a nursing home.  They seldom are.
A transfer means upheaval, plus a change in status.  Nursing home placements are funded by the NHS and care home placements are means tested.  No one has any money hence there is no desire to make the transfer easy.  People get parked in care homes.
Anyway, there aren’t the nursing home places. The consequence; care homes look after people they shouldn’t or they do and pretend they can.
Desperate funding means, one care home a week closing and the sector at best fragile.  Staffing levels are generally, only just enough.
It emerged last week that nearly half of care workers leave the job within a year, there are 84,000 vacancies.
Often, dedicated staff, struggle-by on just-about-living wages.  Many struggle-by on with just-enough-English, with no prospect of their employer providing skills enhancement.
More significantly they just-manage vulnerable residents with next-to-no-nursing-skills.  Skills that should be at the very heart of all elder care.
In some parts of the country it is left to the NHS to sort out the problem.  It is no longer unusual to find frustrated Trusts, trying to stem demand on A&E, recruiting community matrons to train and develop care home staff.
 
See here how the Vanguards are getting the hang of it!
The costs? It’s cheaper than the Trust grinding to a halt.
The care and nursing home sector is stuck in the ’80s and is long overdue a reboot.
Too few operators can claim to provide end-to-end care, too many operators provide thread-bare care.
The sector depends on private families paying over-the-odds for a placement, subsidising the pitiful amount local authorities can pay for citizens in their care.  
We need more places with the skills to see us through an elegant retirement, joyful days, secure nights and a peaceful end.
According to Quality Watch;
‘… care home residents aged over 75yrs are three times more likely to be admitted as emergencies than over 75s in the general population.’
This has to stop.  Admission from a care home should be a last resort.  Who can blame under-skilled, under-resourced care assistants ringing three nines.
The CQC has to get busy and recalibrate licensing requirements.  Here’s nine ideas on the back of a fag-packet for starters:
  1. No care home should be licensed that does not have permanent, qualified, supernumerary nursing care, available on every shift.
  2. An on-call pharmacist that visits once a week…
  3. …and a nutritionist once a fortnight.
  4. All the residents of the care home should be registered with the same GP practice.
  5. The practice service should include a weekly surgery visit…
  6. …and rock solid OOHs.
  7. All care homes should have a qualified end-of-life specialist nurse available to provide hands-on care and as a training resource for care assistants.
  8. All care home staff should undergo regular dementia care training.
  9. A specialist continence nurse should provide regular training to all care staff.
If you think that’s tough or costly, ask yourself what an unplanned A&E admission costs, how much a three week stay in hospital costs and the damage it does.
Nine ideas that will work and Becky Malby has the proof.
Our nation was built by old people, who entrust it to the young to take it into the future, run it and hand it on, better than they found it.   They should not have to fear the future by feeling they are a commodity or a burden.
What is a government for if it can’t take care of the youngest, the poorest and the oldest…

Dementia: Deprivation of Liberty Safeguards

Mixed Dementia

Image result for deprivation of liberty safeguards picture

Musical beds took on a new dimension last night when I was ‘sent off’ – evicted from the bed in our spare room.  I had gone to bed before 10 pm as my leg pain was making it difficult to stand let alone walk.  Maureen joined me some later asking me if it was ok for us both to be in the same bed.  A conversation arose early in the morning and my contribution led to me being told to leave the bed and go into the spare room.  I beat a hasty retreat to the marital bedroom where I remained for the rest of the morning.

I’m looking forward to the arrival of Maureen’s Care Coordinator along with an Occupational Therapist this morning.  It is an opportunity to have discussions about how to make our home a safer and more stimulating place for Maureen.  The one cloud on the horizon is  DoLS and this sensitive issue will be on the agenda this morning.

I hadn’t realised that DoLS needs to be explored in the home environment.   When I reflect beyond my initial concern about such discussions I’m optimistic that it will be possible to consider how dementia has the potential to deprive us both of our liberty and how safeguarding can protect us both.  It is fortunate that I was able to obtain wise counsel on this matter from several sources yesterday and now see today as an opportunity rather than a further nail in the coffin of the independence that Maureen craves!

Dementia: Moving Forward

Mixed Dementia

This week is an opportunity to move forward following Thursday’s  Best Interest Meeting with three meetings already scheduled:

Related imageTuesday:  Maureen’s Care Coordinator is here with an Occupational Therapist to give us advice on how to make our home a safer and more stimulating environment.

Wednesday:  I have a meeting with a Carer Support Worker to explore how she might be able to make my load a little lighter.

Thursday: I have a meeting with my Admiral Nurse as the start of a schedule of fortnightly meetings to review my role as Maureen’s Care Partner.  These meetings will offer the support/supervision that I have been seeking.

It also seems likely that I will need to meet our Key Worker at some time during the week for a progress report on the arrangements for Maureen’s care during the first of my long weekend breaks.  The thought of a break in a couple of weeks will hopefully keep me going as Maureen’s presentation becomes even more challenging by the day!

Dementia: It’s Working

Mixed Dementia,

Image result for It's Working Dementia Picture

I’m now sleeping upstairs at night following the removal of the single bed from our lounge.  Maureen still plays Musical Beds generally spending some of her time in the marital bedroom after an earlier stint on the sofa.  I initially take to the spare room and only join her following invitation.

There was a real bonus yesterday when Maureen told me she ‘had a young man in her bed on Thursday morning’.  I thought it would have been reckless to have mentioned this at the Best Interest Meeting a few hours later as  I didn’t want to risk any further ideas about the need for a Capacity Assessment on this front.

It’s clearly Maureen’s emotional memory that allows her to recall the events of  Thursday morning.  To be called a young man at the age of 71 is rather reassuring!