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: ‘Fings Aint Wot They Used T’Be’

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I think this piece from  Dementia Alliance International about a forthcoming Webinar with Teepa Snow sums up life when dementia is in the home:

‘Living life with dementia inside is an ever-changing experience. Sometimes challenging, sometimes boring, sometimes overwhelming, and sometimes just fine. But it is not like it used to be, no matter how much we might wish it was so. One difficulty is that others may not experience you and your perceptions the same way you do. It is often easier for me to blame the change on you and your dementia than look in the mirror and notice how much of what is happening might be due to how I am being different or changing. With dementia, each of us is not always sure about what each person thinks, remembers, hears, sees, feels, but it is easy to react rather than respond. In this session, I will provide six puzzle pieces to help each of us consider the gifts of curiosity, caution, and courage to help when we are trying to work and live with one another and we have dementia in the house!

About Teepa: Teepa is an occupational therapist working as a dementia care and dementia education specialist. She has over 33 years of clinical experience in the field of geriatrics and dementia care, as well as having provided care to family members with dementing illnesses. Currently, she has an independent practice as well as a clinical appointments with Duke University’s School of Nursing & UNC-CH School of Medicine. She provides interactive and creative educational and practical hands-on training sessions to organizations and providers throughout the US & Canada. She has been actively involved in teaching and clinical research projects throughout her practice career’.

I couldn’t resist a word from Max on this one:

Dementia: Twelve Hours To Go

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I started thinking about this blog half an hour ago: exactly 12 hours before a Specialist Doctor will be here for a home visit.  The last time she was here she conducted an ACE-111 Test , diagnosed mixed dementia, and discharged Maureen from the Memory Service. Over a year later she is wearing a different hat working for the Home Treatment Team.

We had a lovely day together yesterday despite the  late arrival of the carer.  I have registered my concerns about that matter and they will be resolved within formal processes.  What happened yesterday was symptomatic of general problems within the Care Agency and need to be resolved in the interest of clients.

Yesterday morning when the carer arrived  I popped out to buy some basic requirements.  Maureen seemed to accept my need to go out but my reception when I returned with my haul was far from warm.  It was the familiar ‘why are you leaving me with carers while you go out?’  I have asked the social worker to explore these feelings of desertion with Maureen when she makes a home visit on Thursday.

When we went to bed at 8.30 last night I  got the cold shoulder once again.  We had been having another lovely musical evening singing along to vinyl for a couple of hours.  Once upstairs I set myself up in our bed while Maureen continued with her night-time routine.  When she returned from the bathroom she posed ‘where do the girls sleep’ and went on to make it clear that there needed to be separate sleeping quarters.

I need to return here to my  Admiral Nurse’s assertion about triggers in the behaviour of someone who has dementia.   It is not surprising that Maureen resents me leaving her with carers: her life-line is deserting her.  She also knows that husbands are not always faithful when they are out of sight, from bitter personal experience and our affair.

The separate sleeping arrangements have three possible triggers.  Firstly, it is something she grew up with. Her dad had epilepsy and her mum was frightened of his lack of control if he had a fit in the night, so they slept in separate rooms.   Then she has experienced domestic violence in her first marriage with continual fears about what might happen to her when her husband returned from the pub.  She also heard groups of men in the Independent Care Facility speculating on the prospect of being able to tell confused ladies they were their husbands and join them in bed.  Little wonder that she often wants a bedroom to herself and keeps the door firmly closed

All of the above is speculation and if I have not found the triggers they are there somewhere.  Something is behind significant changes in Maureen’s presentation:  it is reassuring that the Home Treatment Team will not put it all down to the progression of dementia.

As I finish this post I think I’d better see how Maureen is as I haven’t heard a sound from her for ten hours.  I hope I’m able to open her bedroom door without frightening her.  Thank goodness for that she is sleeping peacefully.  I need to sort out that monitor as soon as possible so I can hear what is going on when she is in another room.

Dementia: An Admiral Nurse Who’s ‘Been Around A Bit’

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I met with Mel my Admiral Nurse and a member of the Home Treatment Team yesterday morning.  After the meeting I said how helpful is was that Mel used to work within the HTT and she said ‘I’ve been around a bit’.  Her experience has been vital in helping us to get back within the system: rather than remaining discharged because of Maureen’s diagnosis of mixed dementia.

One salient point from our meeting was when Mel said ‘there is a trigger for everything it’s not just a question of Maureen having dementia’.  I find her comments reassuring and confirmation of the approach of the Home Treatment Team.  Therefore, I felt comfortable making clear my expectations of the HTT.

I outlined my concerns about reaching for the prescription pad, highlighting the known dangers of antipsychotic medication .  I placed my cards firmly on the table seeking an appraisal of Maureen’s presentation and the development of a strategy that would lead to us finding a way through this challenging period in our lives.

When the HTT had a brief involvement with us in the past I was pleased to hear that they have a biopsychosocial approach to dementia.  We are so lucky that we will be working with like- minded folk as we travel on this challenging journey.

Just in case you didn’t know Admiral Nurses work for Dementia U K and they are currently campaigning for funding to recruit more.  I would not have coped without the advice and support I have received from Admiral Nurses in this area.

Dementia: Let Down By Care Agency

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I have just logged a formal complaint with our social worker against our Care Agency.  They have cancelled a carer sit this morning with no authority whatsoever.  At a time when I just needed a couple of hours to myself they have let me down.  In my opinion they are not fit for purpose in any shape or form.  This could never happen if they had any understanding of what it is like to be a Care Partner for someone with dementia.  From what I have seen and heard they would not pass any formal inspection by the Care Quality Commission: the sooner they are inspected the better!

Update: Replacement carer arrives an a hour and a quarter later: hope my date hasn’t given up on me!

Dementia: Time Travelling On An Endless Hours Contract

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I have always found the Time Machine by H G Wells a fascinating film but I never thought I would ever have such an experience.  Teepa Snow and others have highlighted how easily those with dementia move effortlessly back and forth in their life experiences.  In the last few weeks Maureen has clearly struggled to work out which Paul I am and that is quite understandable.

She talked to me the other day about the ‘cheeky monkey’ who used to borrow her car because his wife had his.  I’m expecting her to mention that he also used to dump his young children next to her desk while he popped upstairs to get some photocopying done.  Little wonder that she is often puzzled who I am: I’ve moved from being a work colleague to being her husband with a lot going on in between.  One of our neighbours was dumfounded on Saturday when Maureen told her she was ‘going to call the police because she was being kept prisoner here by a man who claimed to be her husband’.

It is also no surprise that Maureen doesn’t believe that she lives in Cleethorpes.  She can remember going back home to Nottingham when she was a child.  A move that caused upset between her parents and separation from the extended family that she loved.

Time travelling is not restricted to Maureen:  I have now moved back into familiar territory of working split shifts.  As a community education worker I worked a mixed pattern of mornings, afternoons and evenings.  No two weeks or days were the same and I often slept on a morning or afternoon off.  The only difference now is that as a Care Partner there is not an employer or a trade union to help me address this endless hours contract and secure the support we need.

I took a chance last night and got away with it.  I went to bed exhausted at 9.30 pm and left Maureen on the sofa downstairs as she refused to go to bed..  I awoke around midnight and saw that she was fast asleep.  Three hours later I found her very confused and cold; wondering where the children were.  This scenario needs to be avoided and I have a number of ideas to discuss with support staff on that front.

I am optimistic that the involvement of the Home Treatment Team will help us on two fronts.  Firstly, to develop a strategy that eases Maureen’s levels of fear, distress and confusion. Secondly, to sharpen the focus on the type of support package that will ensure our ongoing well-being.

 

Dementia: Creating A Quiet Environment

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After a hectic weekend it is important that we try to quieten things down a little.  Maureen needs to get as much rest as she needs.  This means we are discouraging visits from family members and seeking to keep contact to the bare minimum with the landline disconnected.  I’m hoping that this approach will be understood by family and friends alike.

It has now been confirmed that a Specialist Doctor will be visiting on Wednesday afternoon to continue the assessment of Maureen’s presentation.  I have also been assured that support from the Home Treatment team is only ever a phone call away.  It is commendable the lengths that NAVIGO, our Mental Health Service, go to help those with dementia to be able to remain in their own homes.

Dementia: Looking Back: Looking Ahead(Week 13)

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The changes that have been taking place in Maureen’s presentation have led us onto a new route on this journey.  We are now firmly back in the mix of the Memory Service.  Vascular dementia led to Maureen being discharged from the Memory Service over a year ago, as there is no treatment for the condition within the NHS.  Her current presentation has led to the involvement of the Rapid Response and Home Treatment Teams.

To an extent it feels like we have now been thrown a lifeline of support.  Whenever there is a crisis we can ask for support from the Rapid Response Team.  Our current situation will now become the focus of the Home Treatment Team.  They have skilled staff to help us to get through this sticky patch and advise us of the best route in the next stage of this journey.

I can sleep a little easier now that support is at hand.  We have both seen that rest is critical if we are to survive this journey in one piece.  Unfortunately, our afternoon siesta was interrupted yesterday afternoon by the arrival of a fire engine.  The crew had called earlier to arrange a safety check on our set up between 3 and 4 pm.  I hadn’t realised how attractive women were in uniform: particularly young blondes!  Just to be on the safe side she had brought two male hunks with her and Maureen said they were worth waking up for.

We are trying to solve the sleep issue with ‘go to bed when its dark don’t get up before its light’. It’s early days but if ‘resting eyes’ on the sofa is replaced by going to bed together as soon as it gets dark we are moving on.  We slept together again last night and that is real progress!

The next few days are going to be challenging for both of us. Further assessments of Maureen’s presentation are needed.  There will be lots of professional staff calling into our home to explore how our lives are at the moment.  It is fortunate that Chloe our longest serving carer is back from holiday today.  Her presence will play a significant part in settling Maureen: she has been puzzled by her non arrival every day during the last week

Dementia:Good Neighbours

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We are very fortunate that Kate and Mike live next door.  Their informed support is always on hand: they have both cared for parents with dementia.  Kate made an excellent suggestion yesterday that confirmed my thinking  about sleep deprivation.  She said: ‘you need to behave like a mother with a new born baby by taking rest when you can’.  Simple really and it helped Maureen to feel that she wasn’t ‘being lazy’ as I had a lie in as well this morning..

The sun is out here today in all sorts of ways.  You wouldn’t believe the change in the weather and the transformation in Maureen’s presentation this morning.  Early days I know but if I control the environment today there is a chance that we will have a good day.  Maureen is so pleased that Chloe, one of our carers, is back form holiday.  She is also relieved I have discouraged  anyone else calling at the house today.  She said she felt she was staying in a hotel yesterday with all the comings and goings: I’m not surprised.

It is so reassuring that the Home Treatment Team do not work with the ‘medical model’.  How refreshing to have support from professional staff who have a much wider perspective on how to support families where dementia is impacting on their lives.  We are so fortunate to have a rapid Response Team and a Home Treatment Team who help aim to make care in the community a reality.

 

 

Dementia: Superb Support

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We received exceptional support from every quarter yesterday.  In our hour of need local services and family support was of the highest order.  There may also have been other forces on our side as we have both had a peaceful night’s rest.

I could write a book on the events of yesterday.  Blogs are not the place to share such personal detail:  they are the place to praise ‘Care in the Community’ at its’s best.  The powers that be in this area deserve praise for their arrangements to support families in their own homes.  Professional staff from many services provided excellent support throughout the day and evening yesterday.  When we are in calmer waters I will register out thanks for the support they provided.

I am also grateful for the ongoing support and advice we receive via this blog.   It is really helpful that people in a similar position to us are sharing their stories and expertise.  Unfortunately, there will not be time in our lives to visit you all in far flung places around the world but you never know.  I just want you to know that your messages of support make such a difference when the chips are down.  I’m sorry I will not be able to respond to your messages today as I need to focus on securing the home base.

We are not out of the woods just yet.  It is decision time this morning.  I agreed to ‘tough it out’ last night rather than involvement in late night procedures that would have led to Maureen being placed in an Assessment Centre.  My gut feeling is to wait another 24 hours until a Specialist Doctor will make a home visit to discuss the most appropriate way forward.  It always helps when you know and trust the person concerned

Thank you all for your support.   We would not be coping at this challenging time without your superb support.

 

 

Dementia:From Bad to Worse

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Mental Health Nurse now who is under tremendous pressure to calm things down  This is not looking good.  An Assessment Centre may be the best option but needs Maureen’s consent.

Thanks for your support.