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: ‘It’s A No Brainer’

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Quality sleep has become impossible in the last few days, as you will see from this page, and I’m worn out.  Following advice from Marie of the Home Treatment Team, I have made arrangements for Maureen to go into Ashgrove Care Home this morning.  My initial thoughts were to seek a short break but after another night of Maureen being in and out of bed, I hope to extend it beyond a couple of days.

The dangers of poor sleep are well documented and Carer Burnout is around the corner.  It may well be that medication or some significant changes in our routine are necessary to help solve this one!

Once Maureen is safely in Ashgrove I’ll be on my way to Madyhamaka Kadampa Meditation Centre (pictured above).  The peace and tranquility of such a setting are just what I need at this moment in time: ‘it’s a ‘no-brainer’ as Kelsang Dorde ( far right below) would say.

Cheers Dorde, it’s your round when I get up there this afternoon!

Dementia: Well Deserved Recognition For Kate Swaffer

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Great news today that my cyber friend Kate Swaffer has got deserved recognition for her exceptional work:

Australian of the Year

STATE FINALIST

State: South Australia

State Finalist Australian of the Year 2017

Kate Swaffer

Dementia advocate

A humanitarian, advocate and activist for people with dementia, Kate Swaffer was diagnosed with the disease in 2008, just before her 50th birthday. Refusing to be defeated by the diagnosis, Kate has helped redefine the way the world views dementia and has driven improvements to services and outcomes for the 354,000 Australians currently diagnosed. Since then, Kate has completed three degrees and is currently undertaking her PhD. As Chair, CEO and Co-founder of Dementia Alliance International, Kate is a voice for the 47.5 million people worldwide living with dementia. She sits on numerous committees and councils, and was the first person with dementia to be a keynote speaker at a World Health Organisation conference. An accomplished author, Kate has written a number of books and articles, including What the hell happened to my brain: Living beyond dementia. By transforming tragedy into triumph, Kate is changing society for the better and showing others how to lead remarkable lives despite the obstacles.

Dementia: Rescued By South Pacific

I had to resort to old technology to rescue Maureen from her kidnappers this morning.  YouTube was down due to technical difficulties so I hastily put on a compact disc of South Pacific.  Once we got to the ‘Dites Moi’ Maureen started to sing in French and I knew I was settling her into the present.

As Maureen lay down to have a rest she mentioned that ‘her memory had been playing up again’.  She looks terrified in these moments of self-awareness; struggling to understand that her memory issues are not resolved.  It is something that she needs to explore a little further and I’m hoping that Marie from the Home Treatment Team will be here this afternoon for the walk that was promised on Friday.

I think it is likely that Maureen will forget the detail of anything that Marie tells her about her faltering memory.  She may also decline invitations to attend activities that might help.  However, I’m sure she will recall walking in the fresh air with good company: two things she always enjoys!

 

Dementia: Kidnapped

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Maureen woke at 3 am  convinced that I have kidnapped her and brought her to this cottage against her will.  She has been in tears struggling to understand my thoughtless behaviour.  It’s all hands on deck at the moment as I try to reassure her she is safe and will be able to go ‘home’ soon.

Dementia: Enjoying Being Nana

Image result for Enjoying Being NanaMaureen had a lovely time yesterday being Nana to her  grandson.  She was in her element as she talked and walked with Jack.   We often wish we lived nearer to our respective children; sometimes regretting our decision to move to Cleethorpes.   All of our immediate families are over two hours drive away and their busy lives mean that we don’t see them that often.

When Maureen is ‘wanting to go home’, she often says she want to be with her family.  She also says she misses all of the friends who live ‘back home’.  Unfortunately, both of us have lost touch with many of our friends and work colleagues from our days in Coventry. In addition, several of Maureen’s elderly relatives who lived in this area have passed away in the last few years.  Therefore, it is quite understandable that feelings of loneliness often dominate Maureen’s thinking.

There is no simple solution to Maureen’s loneliness.  Moving closer to family would not be a sensible option, as familiar surroundings are vital at this stage of her dementia.  We would also miss out on the quality support available in this area.  What I need to do is  ensure that we continue to have a steady stream of visitors to address Maureen’s  loneliness.

Last night I made contact with Ian Maureen’s eldest son and suggested he brings one of his children with him on his next visit.  This morning I have reminded Maureen of the fun she had yesterday with Jack and suggested that we invite grandchildren to help her decorate the Christmas tree once again.  I’m hoping by constantly reminding her how much our grandchildren love visiting Cleethorpes it will bring back happy memories from the past.

Maureen has been struggling to work out who I am this morning: she has been telling me  how strange it is that ‘Paul’ also likes herbal tea, along with constant references to ‘granddad’! Recognition may return following Chloe’s arrival: when  I will go out as the fellow who provides breakfast and return a couple of hours later as the husband who cooks such wonderful lunches.

 

 

 

Dementia: Communication Breakdown

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It was fortunate that I kept the lounge curtains open last night, as I managed to see an elderly lady walking tentatively down the road.  When I opened our front door I saw it was Pat, who told me she was ‘on her way home as there were footballers in that house’.  I encouraged her to come across the road and have a chat with Maureen.   I thought two would be company and with my understanding of dementia I’d be fine: nothing could have been further from the truth.

Usually, Maureen is pleased to see Pat and they chat together quite happily.  I edged Maureen into the kitchen to explain that I needed to summon help but she scolded me and eventually retired to bed.  Pat looked totally bemused by proceedings but didn’t seem concerned about Maureen’s whereabouts.  Once she was settled in the warmth of our lounge I summoned telephone help with calls to  HICA (Pat’s Care Agency) and Single Point Of Access.

Bradley Pat’s grandson arrived after half an hour; thanked me for my help and took Pat back to her bungalow.  I had tried to chat to Pat whilst we sat and waited for Bradley but could make little sense of her responses.  In fact, I had no idea what she was talking about for most of the time.  It is possible that I’d forgotten the basics of how to communicate with someone with dementia; thinking that the lingo that I use with Maureen would be the ticket.  If only I’d recalled the tips above from Alzheimer’s Care Resource Center things might have been different.

My experience last night reminded me of the saying that: ‘ when you have met one person with dementia: you’ve met one person with dementia.’ It may also be helpful to add that: ‘two people with dementia are not always company.’

Dear DWP………

How does rejecting this claim fit in with preserving independence? I understand my brother’s PIP is under review and his Alzheimer’s is so far advanced that he is barely able to walk around his Nursing Home: he can do nothing else for himself.  This is another example of ‘dementiasm’: discrimination against those with the condition.

wendy7713's avatarWhich me am I today?

The real impact on real people’s lives………..

Ok, so now you can smile, now you can place a tick against another statistic you’ve won, after all we are just a number to you – a number to win or lose.
But what effect on the real person behind the statistic – what price do you place on people’s lives?

I consider myself to be a strong person and you crushed me for a while, so well done, you achieved your outcome. I won’t appeal as I couldn’t face that whole process again. My life is difficult enough without this on going battle. So, much to the disappointment of many, I wave the white flag to bring an end to this unnecessary stress to me and my daughters – oh, yes…..had you forgotten that your actions affect far more than the claimant? It impacts on the lives of those around them as…

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Dementia: A Significant Distraction

I was running out of gas yesterday afternoon as Maureen continued on her mission ‘to go home’.  As soon as I arrived back from shopping she was on the case moving our belongings from the house to the car.  Nothing seemed to shift her from sorting out what we needed to take with us, and what could be left behind.  I tried every trick in the book to distract her but even the prospect of lunch failed: ‘she wasn’t hungry’.

Maureen waited patiently as I ate some soup and was then off again.  Fortunately, I knew that if I played for time reinforcements were pending. Marie from the Home Treatment Team had phoned earlier in the day to say that she would be with us around 2 pm.  During a break in proceedings, I managed to get a message to Marie about Maureen’s current presentation.  When she breezed into our house she had Maureen in the garden within minutes, putting our washing out on the line.  I needed a breather after a busy morning so I cycled to a nearby post box to send some mail.  Laughter greeted me on my return as Maureen and Marie foraged in our garden.  I left them to it and retired to my office in our box room.

Marie stayed with Maureen for over an hour.  I popped downstairs occasionally to make the odd intervention or join in with the laughter that was a constant feature of their intercourse. As Marie’s visit drew to a close she mentioned that she would return next week to go out with Maureen for a walk.  She also mentioned that it would be helpful if I could find out if our social dancing group was still taking place.

Maureen was very animated  following Marie’s visit.  She was clearly excited about being in Marie’s company again.  In fact, Marie dominated her thinking and conversation until she admitted she needed to rest after such a busy afternoon.

The Home Treatment Team have come to my rescue on many occasions since Maureen’s diagnosis of dementia.  I’m reluctant to single anyone out for praise as they are a team of professionals who are highly skilled at crisis intervention.  Yesterday Marie, like many of her colleagues, was able to distract and redirect Maureen to good effect.  How fortunate we are to have such a skilled team available to us: providing person-centred care to support us staying together in our own home.

 

Dementia: From Dreams To Reality

As soon as I saw the above slide from Dementia Alliance International I knew it had to be the starting point for this morning’s post. We all need to make a contribution to making the dream become reality: starting in our own homes and joining with others to widen the debate. As the day progressed yesterday I had to take a number of reality checks that I could have done without.

Once again my plans for respite are in tatters.  I had overlooked how much notice  Care Homes need before they are able to accept residents for respite.  As reasonable as this is it will prove problematic as we are both waiting for medical consultations in the next few weeks: Maureen needs a scan and I need substantial dental treatment.

I had a stark reality check when I returned from my dental appointment.  As I drew up in the car Maureen was in the process of leaving the house with a handful of mail.  The worrying thing is that had I been a little longer I would have had no idea of when she left the house or that she was carrying mail.  It is time to reconsider leaving Maureen to her own devices for more than a few minutes.

My ongoing struggle dealing with Maureen’s reality continues.  She woke early this morning telling me that she was going to see ‘if she could go home, as she is no longer receiving any treatment’.  It will be interesting to see if my continual attempts at redirection can shift her thinking and ‘keep her here a while longer’!

A little later in the morning Maureen was clearly confusing me with her previous husband, as she explained the strict nature of an upbringing I never had.  A few minutes ago Maureen was standing by the phone wanting the number for her mother as she is concerned she hasn’t spoken to her for ages.  I’m hoping that my line of it being ‘too early holds’, my singing an appropriate song distracted, and encouraging her into making a sandwich redirected her thoughts.  Any carer for someone who has dementia has to be eternally grateful for the work of Teepa Snow who has outlined such helpful strategies for supporting someone who has dementia.

My focus on reality this morning reminds me of something I once read in the gents toilet when I was a student at Westhill College: ‘Reality is an illusion caused by lack of alcohol’.  I am beginning to wonder if it would help us both if we occasionally took to the booze again?

Dementia: Showing Gratitude

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One of my fellow Bloggers has taught me the importance of Showing Gratitude.  Jen does it on most days through her Blog and Facebook page.  Her posts are an inspiration showing how to be positive, and grateful, even in the face of adversity.  I am very grateful to Jen for teaching me this important lesson.

I now have 48 hours to decide how many nominations to make in the local CCG’s annual Health and Social Care Awards:  I’m spoiled for choice – thankfully there are 13 categories.  I firmly believe it is important to acknowledge the quality of dementia services available in this area. The excellent support I received yesterday gives a glimpse of what is on offer.

I phoned our Medical Centre before nine, had a response before ten and saw our G P before three.  This was a continuation of the excellent support we always receive from all staff at Clee Medical Centre.  Dr Munjal addressed my health concerns and made arrangements to continue his thoughtful support of Maureen, who was too cold to accompany me to the appointment.

My scheduled meeting with Mel, my Admiral Nurse, allowed me to explore several matters.  Mel’s ongoing message ‘to look after me’ was carefully put, along with an exploration of current issues with Maureen’s presentation.

I received a telephone call in the afternoon from Occupational Therapy who were offering to meet Maureen and suggest activities that might be of interest.  Following some discussion about our experiences at Singing For The Brain I suggested that intervention by Support Workers from the local Alzheimer’s Society might be more appropriate.  A couple of hours later I managed to speak with Holly one of the Support Workers and she and her colleague will be calling in to meet us next Wednesday.

Following our evening meal and Maureen in good voice to the Sound of Music on the record player, I caught up with my Email.  I was pleased to receive a response from Christine, Head of Casework from Focus Adult Social Care, (still on duty after 7 pm) to acknowledge my gratitude for the intervention of her staff on Monday evening.

As the evening progressed I always knew that support was available long into the night.  Focus Adult Social Care never shut up shop and all I ever need to do is ring 256256 and advice and support will be at hand.  In addition, once the Home Treatment Team sign off at 10 pm I can always get specialist advice from mental health staff on the Konar Suite.

I am very grateful for the range of provision in this area, and the professionalism of staff as they attempt to provide support to those who are dealing with dementia 24/7.  It is such a shame that other areas of the country have such limited resources available to support those who are facing a similar journey to ours.