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: Compassionate Company

Mixed Dementia,

Image result for Compassionate Company Picture

Although yesterday was a little disappointing we both had the pleasure of enjoying some compassionate company.   Wayne our chauffeur, like all of the staff of Airport Travel, treated Maureen with dignity and respect.   From the time of our arrival at Madyhamaka to our departure lots of people went out of their way to make our short stay as comfortable as possible.  It was refreshing to see Maureen treated as a person rather than someone who has dementia.  What a lovely change from the approach of many who darken our door and under the guise of a person-centred-approach cannot see beyond her diagnosis.

 

Dementia: As Blind As A Bat?

General, ,

Image result for Blind As A Bat pictureYesterday’s  visit to Madyhamaka failed to get me the respite I was seeking.  Maureen didn’t like it in a strange place – particularly as she was thinking that we were going to visit her mother.  The whole experience has left us both worn out and put Maureen on red alert about my motivation for doing anything.

When I reflect on my aspirations yesterday they were a clear indication of myopia: a short-sighted approach to the real issues here. The issue isn’t  about seeking some form of a Respite Break it is concerned with getting more rest from my role as a Care Partner.  It is fortunate that I’m due to meet our Key Worker this morning.  Unfortunately, his agenda is preparation for the Best Interest Meeting; while mine is how to increase my opportunities for rest until we gather on the 6th of April.

As Maureen thought I ‘tricked her’ again yesterday I think it would be unwise to carry out our ‘cunning plan’ on Friday.  Care Homes and Maureen do not mix and to con her that she is just going out for a meal and then leave her at Homefield House would lead to accusations that I had gone completely ‘batty’!

Dementia: Seeking Respite At Madyhamaka

Mixed Dementia,

I will try and persuade Maureen to accompany me to the Buddhist Meditation Centre at Pocklington today.  Airport Travel is on hand to chauffeur us for the short break that we both desperately need.  The thought of being served wonderful food along with compassionate people in beautiful countryside lifts my spirits and eases the pain in my aching body.

Maureen was reluctant to go anywhere yesterday: she appeared to greet my suggestions for a day out with suspicion.  What she doesn’t understand is that time is running out for us to demonstrate that there are there are ways of me recharging my batteries without putting her in a Care Home.

My discussion with the staff at Homefield House went well yesterday and we have a plan to introduce Maureen on Friday that aims to minimise her distress.  It is very different to similar facilities I have seen in the area.  As our Key Worker implied it is akin to a place where Ladies Lunch with waitress service and sherry served with meals.  Despite its many positives, it is a Care Home and I anticipate that Maureen may see what it is and react accordingly.  I am also unclear whether the level of stimulation that Maureen needs will be available from fellow residents.   All we can do is stick to our ‘cunning plan’ and react accordingly.

If I am unable to persuade Maureen to take a break at Madyhamaka we are likely to face the one size fits all approach to dementia – Respite in a Care Home.  The Best Interest Meeting is likely to remind me ‘that I’m not a robot’, as our Care Coordinator pointed out the other day, and want to ensure specific arrangements are in place so that I continue to have the energy to look after Maureen in our own home.

Dementia: Procrastination and Patience

Mixed Dementia

Image result for Procrastination and Patience Picture

We have slept together in the marital bedroom for most of the last 8 hours.  It wasn’t a bad night as Maureen only woke a couple of times.  When she woke the second time, convinced she had lost Maeve from sleeping beside her, it took over half an hour before she accepted she had been dreaming.  It wasn’t surprising she had been thinking about her ‘missing’ granddaughter as there had been lots of chat about her during Sunday afternoon.  Her dream is a prime example of her inability to recall as was her distress just before we turned in when I was out of sight for a few minutes and she said she hadn’t seen me for hours.

Within a couple of hours of their departure, Maureen had no recollection of her visitors on Mother’s Day.  In fact, she asked me if her son had been as she couldn’t remember seeing him.  How sad that she had no recollection of the couple of hours she had spent with her son, his wife and their four children.  Her focus on Maeve had arisen because our visitors were on their way back home from her 18th Birthday Party.  It is also sad because Maeve used to be a regular visitor when her mother was alive and she hasn’t been here for some time.

Maureen is still at home because the Care Home I have in mind for a Resite Break was understandably unable to carry out an assessment yesterday.  I have an appointment to meet the manager at 11 am to discuss how we can encourage Maureen to take up temporary residence with the minimum of distress.  Procrastination is indeed the thief of time but patience has to be paramount if I am to get the break I so dearly need!

Dementia: Seeking Immediate Respite

Mixed Dementia,

Image result for Preventing Care Burnout Picture

This is a live feed at 4 am as Maureen onslaught of the last few days shows no sign of running out of steam.  She ‘doesn’t want to be here has no trust in me’ and continues to list my shortcomings.  I am exhausted and there are questions about my ability to keep her safe and protect my own welfare: something has to give and today may be a good time to seek a temporary resolution.

I am reluctant to give detail after previous false starts but I think I have found a Care Home that can meet Maureen’s needs.  The problems associated with getting her there could be resolved today with the support of one of her sons.  He will be arriving with his family later this morning and it is possible that we will be able to move Maureen into a place where her needs can be met with a minimum of distress.

 

Dementia: Further Problems With My DNA

Mixed Dementia,

I’m really struggling with my DNA this morning.  Maureen has returned to her theme that she doesn’t need carers particularly those who are not of her generation.  This is the same woman who told her Care Coordinator yesterday that everything was hunky dory.

Maureen launched into this theme at 4 am when I was hoping for further shuteye.  I know I should have distracted and redirected but you can’t always stick to the straight and narrow.  However,  my retort of ‘put up or shut up: even do something about it’ didn’t go down well.

As I constructed this post a Billy Bragg number came to mind:

Billy’s assertion ‘there are two sides to every story’ is very pertinent.  I often pose this to members of our Multi-Disciplinary Team. What they hear is Maureen giving them a version of how good things are. They never see  Mrs Dementia in full flow: distraught that she can no longer be left to her own devices.

At 4 am in the morning it is easy to forget the advice given to me in the early days by Iwona our local pharmacist: Do Not Absorb. – something to remember when you are too tired to distract and redirect.  All the staff at our local Lloyds Pharmacy deserve a medal for the ongoing support they so willingly provide to us – I think it’s time to drop them in another packet of Rich Tea biscuits!

Dementia: The Penny Has Finally Dropped

Mixed Dementia

Image result for The Penny Has Dropped Picture

It has taken a long time but the penny has finally dropped- the Best Interest Meeting on the 6th of April is now the only way forward.  Maureen continues to be a combative mood, struggling to accept that she lacks the capacity to decide upon her future care and accommodation.  There is little point in relating her ongoing diatribe about her incarceration here and my shortcomings.  This is ‘Mrs Dementia’ at full throttle rather than my lovely wife.  My Support Plan is no longer adequate to cope with her presentation: Carer Burnout is looming.

I know that the hard-working professionals who are doing their level best to support us will understand how difficult it is when a loved one is changing beyond all recognition and you are doing your best to hang on to what is left.  Therefore, it is reassuring that the meeting on the 6th of April will seek to protect both of our interests.

Our Key Worker managed to put in some additional support yesterday and more of the same will be needed until the BIM.  ‘Girl Thursday’ also gave me some helpful coaching with a stark reminder ‘not to pander to her’.  Worn out after another night with little sleep I was misguidedly giving options to Maureen rather than serving her food that she usually likes.  With sleep in my eyes, I had forgotten that she lacks the capacity to make decisions. However, she is definitely leaving here today: ‘no longer prepared to be a skivvy in this Care Home!’

I have just stumbled across this poem which is worth reflecting upon as the BIM draws closer:

Dementia: ‘Peach’ Is No Distraction

Mixed Dementia, ,

I decided to remind Maureen today was her Granddaughter’s 18th birthday.  Conversations earlier in the week had resulted in ‘she doesn’t send me a birthday card, why should I send her one’.  However, as her mother died and we undertook to try to maintain a close relationship with the young lady I reminded Maureen of the special occasion this morning.

Things went exceptionally well for a while with Maureen singing along with her Granddaughter on YouTube.  This is one of the numbers that Maureen really likes:

Maureen accompanied Maeve for quite some time, waving to her and clapping after every number.  Then problems emerged as Maureen tried to work out how to send a birthday greeting.  My explanations were not well received as I tried to help her understand that YouTube was not interactive and Maeve could not hear her accompanying her singing.  I even suggested visiting the  Birthday Girl in Coventry but that fell on deaf ears.  After a while, things turned really sour with Maureen returning to a familiar theme of being brought to this house against her will.

When Maureen is ‘wanting to go home’ there is little I can do to shift her reality – it is one of those occasions when distraction and redirection rarely work.  I will need additional support today if I’m going to survive Maureen’s current presentation.   Once again I’m looking to our Key Worker to come to my rescue with his usual person-centred approach to our situation.

One final point it is my guess that the forthcoming Best Interest Meeting has triggered unfortunate changes in Maureen’s presentation.  Her advocate was here yesterday and the last time she was here Maureen was distressed for a couple of days.

Dementia: Meditation Is The Answer

Mixed Dementia,

Image result for Buddha was asked what have you gained from meditation Picture

Following a period of  considerable upset for Maureen, there are three simple solutions to alleviate a repetition of last night:

  1. Remove her car from our drive to prevent her focus on others breaking into it.
  2. Switch off a noisy radiator in our bedroom.
  3. Ensure that whenever she sleeps the room is not in total darkness.

We turned in early last night to sleep in the marital bedroom together anticipating the restful night that we both needed.  Maureen woke shortly after midnight and lambasted me for allowing other people to get into her car: she could see them sitting in it from the bedroom window.  Her diatribe continued for almost an hour with a level of personal abuse I had never experienced before.  At one stage I thought I would need to call for reinforcements to settle her down but I made do with a call to Single Point of Access.  Two hours later there was a different focus for her distress.

As I slept downstairs I heard a loud bang as Maureen hurriedly descended the stairs yelling about insects in her bedroom.  As she joined me in the lounge she said that there was a swarm of wasps attacking her. It didn’t take me long to assure her she was safe with me and I managed to settle her on her favourite sofa and she went to sleep almost as soon as her head hit the pillow.

My three action points above give me a sporting chance of having a better sleep tonight.  I had phoned Single Point of Access to request our Key Worker to organise a night sitter but that is no ready-made solution as a female in the house overnight makes Maureen suspicious.  What has helped after being woken from deep sleep is a short period of meditation to enable me to clear my mind and go back to sleep.

I plan to blog again at 7 am as I post on a very special birthday.

 

Dementia: A Reality Check

Mixed Dementia, ,

Related image

I had a real warning yesterday – a distinct reality check. Maureen was distressed throughout the day: initially worrying she was being discriminated against, then making me aware of the consequences of stealing her car, before accusing me of negligence in my role as Manager of this Care Home.  Her offensive continued throughout the day at a time when I was struggling to stand because of severe pain in my left leg.

Having bilateral hip replacement has solved one set of problems but it has created others. I am no longer troubled by pain in my hip joints but there are days when I have aches and pains in my legs that I could do without. It is clear that sleep deprivation along with a poor sleep pattern is not giving my body a chance to recover from the daily pressures of being a Care Partner to someone who has moderate to severe dementia.

Maureen was on the attack again early this morning accusing me of feigning injury to gain her attention.  Ten minutes later she has cooled down and was pleased that my TENS Machine along with a turmeric based drink may have eased my troubled legs.  I hope she remains in good form as our Advocates for the Best Interest Meeting will be here in a few hours.

Two really positives from yesterday as opportunities for Carer Respite appear to be falling into place.  Firstly, in the morning I returned to Waltham House Care Home to explore a number of options.  I’m optimistic that we have thought through a way of Maureen sampling what is on offer there without causing further distress.   Secondly, in the evening I had a really supportive conversation with Maureen’s son, who despite a busy schedule is keen to help to keep his mum remain in her own home when I take a break.

The BIM is bound to focus the need to build Carer Respite into our Care Plan.  I am optimistic that plans are emerging that will preserve person-centred care for Maureen and ensure my role as her Care Partner is sustainable.  However,  the progressive nature of her condition means that our plans will always need to be flexible to take account of the dynamic nature of dementia.