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: Dealing With Side Effects

 

Image result for Side Effects of Medication picture

One message that is coming through loud and clear from  NAViGO at the moment is the risk of side effects from medication.  This was evident in the entire time that Maureen was in the Konar Suite.  It was stressed again on Monday when  Maureen’s Care Coordinator said ‘it’s much better if she can get away without taking any more tablets’.

One side effect of dementia that I’m struggling with at the moment is Maureen not knowing how to fill her time.  This is particularly problematic on these dark and cold evenings.  Addressing this as ‘sundowning’ is unhelpful – Maureen simply can’t remember how to fill her time!  To help her on this front I have decided to come out of retirement and start organising evening activities again.  This is how Maureen and I first met: we worked together facilitating adult learning opportunities in Coventry

I’m spoiled for choice in my programme that begins tonight.  Maureen has such a wide spectrum of interests that it shouldn’t be too difficult to persuade her to join me in a learning adventure.  She has always been a good linguist so French will be on offer this evening.  There are all sorts of informal ways I will try to hook her into what should be a fun evening.  I have also set up the Sun Room as an Art Studio in case she gets bored with ‘parlez vous Francais?’

Update: At 9.30 Maureen is singing and dancing to the Sound of Music in our Sun Room.  Her joy is infectious and it is so wonderful to see her in such good spirits.  I’m really back in the working groove now as we organised classed for adults during the day: even integrating them into classes alongside school pupils!

Dementia: More Than Words

Maureen caught me at it early this morning – whistling this number in the kitchen:

When she found me clearing up the debris from last night’s meal she was holding two blankets.  She had spent the night on the safety of the sofa: a place where men would find it difficult to get at her.  As soon as she saw me she gave me a beautiful smile so I  hugged her and burst into the above song.

I then told her I was going to remind her of the first cassette tape she had ever bought for me:

As soon as the opening lines appeared on out TV screen Maureen said: ‘I remember that one’.  Music continues to be such an important part of our life and Girl Monday/Tuesday and Friday often resorts to YouTube.  When I return from my time off  I hear them at it, with singing and laughter ringing out as soon as I open our front door.

The first meeting with Maureen’s Care Coordinator went really well yesterday.  When I mentioned the need for clarification over Maureen’s diagnosis she agreed that it was a matter that needed clarifying – ‘there was nothing to lose’ by revisiting this issue.  It has always concerned me that Alzheimer’s was diagnosed in the early days but that has now been revised to vascular dementia.

The really good news from yesterday was there is now a Crisis Contingency Plan in place with numbers to ring whenever the going gets tough: far more than words! 

 

Dementia: Time For Tweaking and Sleeping

 

Image result for Time for Tweaking Cartoon

We are now halfway through the cycle agreed at the Best Interest Meeting.  Two weeks today Maureen will go into Alderlea Care Home for a week.

Maureen’s Care Coordinator is due this morning and this will be an opportunity to discuss how things are going.  Tomorrow our Key Worker and I are meeting our Care Agencies to review progress.

Our carers; the girls’ as Maureen calls them have been remarkable in the skill and compassion they have shown in helping Maureen to settle at home.  They have worked tirelessly to involve her in domestic duties despite her claims that she is entitled to be a Lady of Leisure.  In her view, such things as general household duties including the preparation of food are my job ‘as I don’t do anything else for her’.

Although I will have a week off in a fortnight, the current arrangements are no longer adequate.  I have already clarified that one of our carers is available for an additional three-hour shift a week.  This will mean that I can have six hours to myself on alternate Tuesday’s and Wednesday’s.  Such an arrangement is a phone call away.

Image result for Paul Mckenna Picture

Paul McKenna could help me to solve my sleep deficit.  When Maureen wakes distressed in the night I’m finding it increasingly difficult to get back to sleep.  I’m hoping I can find my ‘Sleep Like A Log’ CD as McKenna has helped me to count myself back to sleep at previous difficult moments in my life.

 

Dementia Love verses Attachment

Today’s Buddhist message is from Mexico:

The same as any Care Partner I need to focus on Maureen’s needs rather than my own.

She woke up this morning saying that: ‘no one wants me I’m too much trouble.  I can’t do anything for myself now.’

My reassurance that she means everything to me doesn’t cut any ice when she feels so lost and alone!

Dementia: Konar – I Was So Wrong!

This week’s song of the week has to be ‘So Wrong’.  I thought that Maureen going into an Acute Mental Health Unit would be a disaster for us both.  It’s a time to eat my words.

The Konar Suite is nothing like your typical Mental Health Unit.  My reservations that they would turn her into something like my brother well ill-conceived.  He has Alzheimer’s and came out of an MHU in Coventry a shadow of his former self: goodness knows what they did to him.

I have to admit it took me a while to trust the medics on the Konar Suite with my dear wife.  I must have been deaf to have not listened at first hearing.  Their message was loud and clear ‘we have to weigh up the benefits of any medication against the risks involved’.

Maureen is settling well after three weeks away from home.  She generally makes her way up to our bedroom at night after dozing on the sofa for a while.  That is another thing I have to thank the staff on the Konar for – not only did they encourage her to sleep in a bed whilst she was in their care; they coached me on how to do the same when she came home.

Although Maureen has been discharged from the Konar Suite staff are always available for out of hours telephone advice and will make a home visit in an emergency.

 

How often should I visit?

As I posted yesterday our newly built ensuite Sun Room is now open for family members and friends to stay overnight. This post from Kay Bransford discusses the issue of frequency of visits.

Kay H. Bransford's avatarDealing with Dementia

kayandkittyxmas2014For those who have a loved one in an assisted living or memory care community, this question lurks in the back of all of our minds. There is no right answer, only the answer that is right for you.

I recall several times having voice mail waiting for me asking “When are you coming to visit?” In many cases, the calls came within 20 or 30 minutes AFTER my visit. Why am I visiting when my mom doesn’t even remember it?

I came to realize that I needed to recognize my visits were for me. What was the right balance to not only be her advocate and make sure she was getting the right care, but also ensured that I was also present for my own family. The weekly number of visits fluctuated over the last few years of mom’s life. I always struggled to know what was the right…

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Dementia: From Dancing Queen To Despair

 

The words of Maureen’s Consultant on the Konar Suite rang out this morning: ‘there will be fluctuations in her presntation’:

Monday evening: As I prepared our evening meal Maureen was in exceptional form.  She sang and danced along to some of our favourite records.  Sometimes she invited me to join her at others she pranced around the dining room like a ballet dancer.  I have a lovely video clip of her virtuoso performance that I am not able to post here.

Wednesday morning:  Maureen stirred beside me in bed a short while ago, so I greeted her as Charlie Drake with: ‘hello my darling’.  She responded with: ‘I want to go home, I hate it here: no one ever comes to see me’.  When I foolishly responded with ‘I’m here’ she said: ‘you only feed me to keep me to keep me alive and you never take me anywhere’.

I accept that Maureen’s presentation will continue to fluctuate.  However, we do struggle for visitors as our closest family members live over a hundred miles away and lead busy lives.  However, I’m hoping the VACANCIES SIGN on our newly built Sun Room might help on that front.  We are now well equipped to cope with a couple of visitors overnight in our en-suite extension and look forward to the bookings rolling in.

 

 

Dementia: A Must Read

The following article is reproduced with the kind permission of the author Roy Lilley

Image result for Roy Lilley Picturethe Editor of nhsManagers.net:

‘Ten elderly people with dementia live, in a care home, supported, but as independently as possible.
To provide meaningful day-times, they take part in daily chores and contribute to light housework and preparing meals, under supervision.
Two residents have taken on the responsibility for opening and closing the curtains, night and morning.
One morning it all goes wrong; whilst opening the curtains a resident falls and breaks a hip.  This is reported as a serious untoward incident, the regulators are informed, as are the relatives.  The press get hold of it and the roof comes in.  The whole care model is under threat.
The resident’s participation in their care model comes to an end.
Had the incident been thoroughly investigated, it would have been discovered there was a leak from a radiator which meant the client slipped on a puddle of water.
The rules have now changed, the lives of the residents less interesting because everyone is risk averse.  Managers are thinking about their careers.  Now it’s all about the rules.
Let me ask you some questions…
  • Can you name five rules, in play, where you work?
  • What is the purpose of the rules?
  • What rules would you delete and change?
  • If you could invent three new rules, what would they be?
  • Do you think rules should be made in agreement with the client; if they want to take a risk they should be allowed to do it?
Think about the dignity of risk.  In our lives we compute the risks and decide; we cross the road before the little green man appears…
Now think about a lady with dementia.  She screams.  She screams and screams and screams.  The staff can’t stand it and the other residents complain.  So, they lock her in a room until she stops.
This is called negative behaviour.  A resident with limited communication resources reacts in the only way they can.  They either get violent, withdrawn, or scream.  She has to scream to make a point.
The question is; what point?
More questions:
  • Have you even demanded attention in a negative way?  What was the response?
  • Statement; ‘If a client cries out for attention, it says a lot about you’… discuss.
  • How do you find out the cause of negative attention?
  • What do you think of the statement; ‘if only she didn’t have become a client…’
These are not my questions.  I’ve pinched them from a book by Geert Betting,˜Moving on and Sending Still“.
Fundamentally a book about caring for difficult people in a care home setting, LD and dementia clients but it is so much more…
By accident the book explores the psyche of care and the people we care for.  It asks tough questions and made me think.  The signals we give to the outside world and how we misinterpret them… to our cost.

What group of patients do you work with?

  • What are the similarities among them?
  • Can you, clearly, describe the work you do, to friends and family.
  • Have a few people around you and ask them to write five key words about the work you do.  Ask everyone what they’ve written… what are the similarities?  What do you notice?
  • Do you sometimes say, ‘I don’t have time’… could you have made a different decision?
This is a very good book and read with an open mind can be applied to wherever you work in the care system, regardless of what you do.  Do that and it comes a great book.
Working under pressure, working with scarce resources, working and managing at the very edge…
…this is a clever book designed to make us reflect and is a must read’.

 

Dementia: Coming Home

 

Image result for Being Back Home Picture

It is now a week since Maureen’s discharge from the Konar Suite.  She is beginning to settle down to being back home after three weeks in an Acute Mental Health Unit.  Just as her Consultant stressed her presentation is subject to fluctuation.   My status can change from her husband to the wicked man who is stopping her from going home at the drop of a hat: from hero to zero.

We still have great fun together and Maureen’s wicked sense of humour shone through when she was in the hospital.  When a staff member was encouraging her to take lunch Maureen said ‘she wasn’t hungry and suggested that the individual concerned would be well advised to eat a little less’.   I’m not always sure our larking about is always well received by professionals when they call.  I hope it doesn’t lead to them to place us on some psychiatric scale.

I’m doing my best to stick to routines that help Maureen’s dilemma of ‘not knowing what to do with her time’.  It is now very obvious that she needs prompting to complete most tasks.  Her days of hanging out washing on the line have gone.  She can manage to assist with such tasks but forgets what she is meant to be doing if she is left to her own devices.

We slept together beautifully last night and that is a real bonus in the scheme of things.  I know it’s very early days but I’m optimistic that things can only get better if I continue to take breaks and don’t try to do it all by myself.  It is so reassuring that the Home Treatment Team are monitoring how things are going and are calling shortly for yet another chat.

I have to admit my reservations about Maureen going into the Konar Suite were ill-conceived.  They treated us both with the utmost dignity and respect along with lots of TLC.  To experience a Mental Health Unit that does not see medication as the answer to everything was so refreshing!

 

Emails between friends

There is much to write about Maureen’s stay on the Konar Suite and the ongoing aftermath but I was keeping my powder dry for a while. However, I couldn’t let a day go by without posting this blog from my dear cyber friend Kate Swaffer.

Kate Swaffer (she/her) Kaurna Country's avatar

This week I was asked to provide some information about one of DAI’s founding members, the late Richard Taylor Ph.D. I headed to my files (word and emails) simply titled: Richard Taylor. It was an opportunity to reflect when not feeling hopeless, as it’s often Richard who I turn to when I want to give up or it seems too hard to keep going and I feel hopeless.

Some days I imagine we have come a long way, then I read an old email like this, and realise we haven’t come that far. I still miss dear Richard, as I know many others do. And I worry that people do not want to work together, as that more often causes much more harm to the ’cause’, than good. On the days I start to think maybe we have come a long way, I then read an old email trail like this, and…

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