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: Too Tired To Function

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I am not functioning well at the moment as there are too many bases to cover as Maureen’s dementia continues to progress.  It is no longer sensible to travel to see family in Coventry tomorrow: The prospect of 8 hours on public transport is daunting, even if the heat wave lets up on us, and driving down would be dangerous

Sleep deprivation is now a constant in my life with Maureen refusing to come to bed again last night: claiming she hasn’t got a bedroom here.  An hour later she woke calling for her mother or myself because she was frightened about being alone downstairs on the sofa. She has woken several times in the night worrying about one thing or another as I lay beside her.  Her current concern is that there is no-one else here to tell us what to do in the morning

There is little doubt that the current heatwave in Costa del Cleethorpes is adding to Maureen’s confusion.  I’m struggling to cope myself in these extreme temperatures so goodness knows what it is like for my wife.  I had to resort to some emergency measures yesterday afternoon with an oscillating fan and bowls of cold water for her feet.  I’m thankful for the hints on the Unforgettable Site to help me support Maureen during this heatwave.

However I’m not kidding myself that I can blame Maureen’s presentation on the heatwave.  She has been struggling to find her way around our house for quite some time. Her contribution to household tasks is now minimal; often counterproductive leading to more work on my behalf.  This downward spiral shows no sign of reaching a plateau and I need eyes in the back of my head to keep her safe.  Yesterday I had to chaperone her back home several times as she has strolled off down the road in odd shoes carrying all sorts of gear.  Her walkabouts often take her into next doors front garden and trying to find a way into their house.

Maureen is sleeping for considerable periods during the day.  She frequently complains that she is tired and her naps can last for a couple of hours.  When she wakes another day has passed in her reality and she is expects breakfast.  When she is resting this is an opportunity to catch up on something that was difficult to do while she was awake but I continue to be advised that sleeping during the day is not the solution to my irregular sleep pattern.

 Unless I can find a way of getting more sleep I fear I’m going to keel over and Maureen’s care will be taken out of my hands.  Therefore my meeting with my Admiral Nurse this morning and our social worker on Monday could not have come at a better time.  I am also scheduled to meet Paul Martin my counsellor a week today and a consultation with my G P will not go amiss: something has to change otherwise I will not be able to care for Maureen in her own home for much longer.

David Bowie had something interesting to say on the subject of ‘Changes’:

 

 

 

Dementia: Accentuate The Positive

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It would be easy to slip into doom and gloom after another night with little sleep. Yet if I go with Bing there is much to celebrate:

  • I persuaded Maureen to go to bed around midnight.
  • She let me join her in the marital bed at 1.30 pm.
  •  We celebrated her generosity in loaning ‘them’ her car so children could be taken out on trips.
  • Maureen told me she liked me in bed with her.
  • It’s a lovely morning in Costa del Cleethorpes.
  • An early morning shower has eased my aches and pains.
  • The pain from the tear in my rotator cuff has gone and I will not need an operation.
  • I have managed to ease into a new pair of 38″ waist shorts this morning.
  • I am meeting my Admiral Nurse tomorrow to review my approach to supporting Maureen.
  • Care has been arranged so I can visit family in Coventry on Thursday.
  •  Vegetables are growing well on my plot particularly tomatoes and kidney beans.
  • Maureen is currently lying in bed singing ‘The Way We Were ‘ as she waits for a pot of tea to cool:
  • We are going to have an enjoyable day together seeking opportunities to have fun.
  • We are still with you on this one Bing!

Dementia: Safe and Sound

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I am drafting this post at 11pm in the hope that Maureen will come to bed shortly and not interrupt me when I am in deep sleep. It became apparent during a late evening walk that she was unsure who I was when she asked me ‘if I had any children’.  She also said that sometimes she thought ‘I was here to help her get her memory back’.   It also became clear as we were homeward bound that she thought we had never been on Thorpe Park before despite many walks around the holiday camp.  In fact we took a similar route home on Friday morning.

She became very withdrawn a short while ago when sorting through some washing that our carer had ironed this morning.  She said that ‘n0-one had told her where to put her clothes once they had been ironed’ and referred to an incident a couple of weeks ago when she had felt humiliated by the insensitive behaviour of a carer who doesn’t normally darken our door.

I have now beefed up our security after the scare on Sunday morning.  The patio door has been made more difficult to open from the inside after a bit of DIY.   Both bolts are now operational on the back gates so that is another escape route that may have been closed off. In addition a warning bell now sounds when the front door is opened.

The other positive that happened today was that Maureen pressed the button on the baby alarm to get my attention.  I’m not sure she knew what she was doing but I remain optimistic on this front.

 Until this evening Maureen had hardly been out of the house for the last three days.  She has accompanied me on short car journeys to the shops but has generally been reluctant to go out for a walk.  Whenever I have suggested going out she has said she is too tired and has been sleeping for large parts of the day and evening.  She often says that her leg hurts or she has nothing suitable to go out in.  

There is no carer sit tomorrow due to a misunderstanding about my need to have some time to myself.  This may provide an opportunity to try something different in an effort to help Maureen enjoy the day.  She often says she is concerned that she is spending her life in bed or on the sofa: I’ll do my best to move her in a different direction tomorrow.

I am a little worried about leaving her alone downstairs, even with the baby monitor activated.  The back door key is missing and is likely to be in her pocket so she could get outside.   If she wakes and feels she is locked in goodness knows what might happen.  The safest option may be to kip on an armchair for a while: thank goodness it is possible to flick a lever and make them horizontal.  I can’t think of any other way to keep her safe and sound tonight.

 

Dementia: 10 Steps To De-escalate A Crisis

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It’s very hot here today in Cleethorpes and Maureen is struggling to cope with the heat.  So I’ve just found hints from Teepa Snow to take the heat out of the situation when ice creams no longer do the trick.

I have been asked to remove this post by my cyber friend Amazing Susan, who I have great respect for, as this information is already on her  Blog.

The heat must be getting to me to make such a silly mistake.

 

 

 

Dementia: Seeking An Assessment

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 It took me 12 hours yesterday to determine who had come to Maureen’s rescue at 5 am on Sunday morning.  As I was watering our front garden Dennis stopped by on his bike and mentioned that he was the kind soul that had seen her safely back home.  He lives 5 doors away and found Maureen ringing his doorbell saying she had been locked out.

The worrying aspect of this incident is that Maureen didn’t know who Dennis was when he popped to say hello as she sat in the garden yesterday afternoon.  After he had gone she asked me how I knew him because she didn’t know who he was.  In fact she had told me that Mike our neighbour had come to her rescue and I knew he was in hospital following a heart attack.

My concerns about Maureen’s functional capacity grew later in the evening.  As she tidied up the washing on the line she put 9 pegs on one of her T Shirts and made several strange adjustments to other items on the line.  This remains one of her favourite tasks and her efforts have to be seen to be believed.

I am also concerned about Maureen’s emotional state with anxiety almost a constant feature of her presentation.  This morning she once again shared her fear of me getting fed up and leaving her.  She is also concerned about her energy levels and fears she will never have enough energy to enjoy her life again.

I managed to speak to the Home Treatment Team yesterday and they have agreed to liaise with our social worker to determine who is best placed to carry out an assessment of Maureen’s current presentation.

 

Dementia: Don’t Stop The Carnival

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As you will have seen from my earlier post A Rude Awakening I’m not having a good day. Same story yesterday when we didn’t make it to see the carnival as I failed to give Maureen enough time to prepare for watching the parade.

Our afternoon siesta went on too long and she simply didn’t have enough time to find clothing that felt comfortable, so she retired once again to the sofa in frustration.  This was a classic example of ‘fail to prepare: prepare to fail’.  If I’d have got her to start changing into a suitable outfit around 3 pm then we might have made it down the road by 5 pm.  Once again I’d overlooked the fact that dementia means that everything takes so much longer and the carnival wouldn’t wait for us:

Pc 70 is clearly not destined for the CID: four hours after the event I’m still no further forward in finding who rescued Maureen this morning.

Dementia: A Rude Awakening

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I was awoken at 5 am this morning by voices from downstairs.  Maureen tells me that she had been out looking for me and Mike our neighbour had a key so he let her in.  I doubt her story as Mike is still in hospital awaiting tests following a heart attack.

It was a familiar tale last night with Maureen frightened of men and wanting to sleep alone.  My mistake was failing to set up the Baby Monitor before I took my place in the spare room.  Although I’m so tired at the moment I may well have slept through Maureen waking and going outside clad in her PJ’s looking for me.

Chloe and Gail, our main carers have both encouraged me to seek a further assessment of Maureen’s condition. There is little doubt that her dementia is continuing to progress and her poor short-term memory is now a major concern.

This morning was a Rude Awakening: it was also a Lucky Break.  Complacency and exhaustion put Maureen at risk and need to be addressed.

It is fortunate that a review of my Carers Assessment is only a week away.  I am aware that the Agency are under pressure to staff their calls this weekend so I won’t call for support today.  The time has arrived to call time on having no carer support at the weekend.  I also need to ask our G P to carry out a thorough assessment of Maureen’s presentation as her dementia progresses with no sign of a plateau.

Postscript: Teepa Snow encourages Care Partners to become detectives as they attempt to support their loved ones.  I will need to go on the beat as PC 70 (my initials and age) shortly to find, and thank, the kind soul who chaperoned Maureen back to our house at 5 am this morning.

Dementia: Theresa -It’s A Carnival

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When I phoned up our Care Agency at 5 pm yesterday to see if arrangements had been made for my trip to Coventry, next Thursday or Friday, I was told that they were still trying to sort out staffing for the weekend.  Then I remembered its Cleethorpes Carnival: stupid.

When I was as a supply teacher difficult classes were often labelled as ‘Zoos, Pantomimes, Circuses or Carnivals’ by my colleagues.  There is no doubt that Care Agencies have real difficulties this weekend as it is Cleethorpes Carnival.  They are trying to persuade their staff to work when family interest might lead them in a different direction.

Care Agencies are forever working in a Carnival atmosphere: starved of resources by Local Authorities; dealing with the sharp end of Chancellor Osborne’s austerity measures. Consequently, they pay their staff the Living Wage and a few pence an hour extra for working weekends.  Little wonder that it will be after the usual staffing crisis of the weekend is over before they have time to sort out who will be with Maureen before my day trip to Coventry.  The Carnival will be down the road in a few hours: it is never over for the poor souls at the Agency who are trying to make sure that all their clients will have carers with them this and every other weekend.

Time the carnival was over Theresa:

 

Dementia: Memory Loss or Madness?

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I woke very early this morning racked with pain in my shoulders and legs.  When this happens I take a shower and usually the pain reduces or goes away completely.  As I dried off I heard Maureen crying in the bedroom.  I rushed in to find her upset that she thought she had been left alone just as others were preparing to go out on a trip in her car.

Maureen spent sometimes regaling the owners of this ‘Care Home’ or ‘Hospital’ for abusing the gift of her car.  Apparently they often used the car and never asked her to join them on days out.  Then she let out a familiar cry that: ‘no-one wants me’.  I assured her that I did and would never leave her.

When we talked about the death of her young son the other day Maureen told me how she tried to deal with her loss with dignity.  She mentioned that she wanted to be as dignified as the Royal Family were when they were dealing with loss of a loved one.  I think I witnessed a similar approach when her daughter died : few tears in public and a stiff upper lip.  Now Maureen’s dementia is out in the open she wears her heart on her sleeve and the tears flow.

Kate Swaffer calls her husband Pete her BUB – Back up Brain.  I have chosen to be ‘Maureen’s Batman’ alongside being her ‘Tea Boy’. If I am within sight Maureen feels safe: when she doesn’t know where I am she is frightened.  Little wonder someone who has always prided herself on her independence often gets down or feels she is a burden.

At 5.30 am I quickly don my uniform and go into action: hoping a cup of tea  might solve Maureen’s distress.  She went downstairs a short while ago and is incensed that there was no-one else there.  Nothing I say shifts her from: ‘I wouldn’t have come here if I had known’.   I’d better get dressed because she is threatening to go to her Auntie Clarice’s and my warning that ‘she’ll still be in bed’ may not stop her from walking out.  More later …..

It looks like the tea will end up as plant food, once again, because Maureen has now dropped off in a chair.  Sometimes she wonders if she is going mad but her memory loss is a welcome relief from what we experienced on our walk on the Prom last night.  We saw so many  people living in a virtual world searching for Pokemon characters.  Our final conversation was with with a mother and a teenage daughter where there was a crisis:  the youngster only had 1% battery left on her phone and the grown up was hot on the trail of Pikachu- I rest my case!