Dementia: ‘Is It Time To Get Up Yet?’

General

Maureen has woken frequently from 1 am asking if it is time to get up.  Beth Britton has just blogged on dementia and sleep disturbance: her post along with ideas from the Unforgettable Team has provoked thinking on a number of fronts as I try to improve our sleep patterns.

There is no Bank Holiday for Care Partners with our Agency because they are not able to provide ‘sits’ at these times: so Chloe was not with us yesterday.  That meant disruption to our normal routine and vigilance from your truly throughout the day.

I made a mistake late afternoon that led to Maureen taking a significant nap until early evening.  If I had helped her with a clothing crisis she may have not got upset and retired to bed.  Then I made another error by not joining her in the ‘land of nod’ and have paid the price of exhaustion.

Today gives us a chance to get back into the old routine providing we can overcome the ‘no Mary syndrome’; with a new face here today and another on Thursday.  Tomorrow throws up another vagary with my away day in Coventry when Maureen will be supported with wall to wall care around her son’s six hour stint.  Just to be on the safe side I will check in with the Agency this morning to make sure everything is in hand.  Things could have gone pear shaped with Natasha the Calls Coordinator for this area having terminated her employment on Friday.

There is a lot going on in the next few days and it could well take a few days until we settle back into the old routine: we should be so lucky with dementia calling the shots!

Postscript: I just caught Maureen a couple of streets away as she tried to scarper.  There was i thinking she was happily putting the washing out and off she trotts: you need eyes in the back of your head with that woman.

Dementia: Looking Back: Looking Ahead (Week 16)

Uncategorized

It’s always pleasing as a Care Partner when your concerns have been listened to and heeded.  I called time on our Care Plan a month ago giving ‘notice to quit’ unless improvements were made.  Four weeks later we have been allocated another 7 hours of weekly carer sits (respite) alongside additional support for day trips to visit family.  There is no doubt that North East Lincs. Council do their bit in trying to look after their carers’.

Developments on Friday have now cast a new perspective on our situation: Maureen has been judged unsafe to ‘walk alone’.  This judgement will require very careful management on my behalf as I attempt to traverse the tightrope of independence and safety.  Maureen continues to challenge the judgement recalling how well she raised three children by instilling in them the Green Cross Code.  Therefore popping out to the shops and leaving Maureen to her own devices becomes a risky venture; as locking her in is not a viable option.

I have been reminded by many people that Maureen’s presentation is nothing unusual. Perhaps my biggest challenge is accepting that despite my best efforts the progression of her dementia is relentless.  Therefore ‘Mrs Dementia’ may often be around and empathy significantly absent.  When it is full flow Maureen’s needs will be paramount and rational thought will fly out of the window.  My absence for my day trip to Coventry on Wednesday could well lead to accusations of desertion: they will come from ‘Mrs Dementia’ not Maureen.  The challenge for me is not to absorb any hurtful comments as I try to forge a life of my own alongside being a Care Partner. 

 

Dementia: More Good Fortune

Uncategorized

Maureen went downstairs at 4.30 am to make a cup of tea.  She returned shortly afterwards saying she had realised it was too early to get up.  I encouraged her to try to get back to sleep but she said she hadn’t got a bed.  Then she made it clear I wasn’t ‘her Paul’ so I retired to the spare bedroom.  It was cold in bed alone making it difficult to get back to sleep I decided to get up.

Once downstairs I decided to watch some Buddhist teaching on YouTube and my good fortune from the day before continued, as I stumbled across the following teaching:

Once again Dekyong gives a profound teaching on how to have a happy life that makes sense of the opportunity that I have to give loving kindness.  As many of my Buddhist friends have said Maureen’s dementia is an opportunity to give unconditional love the recipe for a happy life.

Yesterday had been a day of good fortune:  early on managed to find three LP’s for a pound at the Car Boot Sale.  Then walking in the sunshine in Cleethorpes mid-morning we had a wonderful experience.  We made our way to Kew Road where Maureen lived as a child where we bumped into four elderly residents who were transforming the back ally.  They invited us to see the floral tributes they were creating for the Queen’s birthday and Armed Forces Day.  Maureen loved chatting to them and talking of her days living in their neighbourhood.

The real good ‘Fortune’ continued in the afternoon when a diverted shot from Marc -Antione was diverted into the net after four minutes and set Coventry City on their way to a 3-1 victory over Sheffield United.  I hope no-one tells the rest of Sky Blue followers that their losing run coincided with my £1 wager that they would win the League!

It looks like another sunny day here in Cleethorpes.  I have no idea how we will spend the day but I will count my blessings accepting that if I take this opportunity to continue to show loving kindness we will continue to have a happy life together.

Dementia: ‘I’m Moving Out Of Here’

General

Maureen woke at 2.30 am frightened there was an animal, possibly a fox, in her bedroom. She is convinced that the people that run this place keep animals here to deliberately scare residents: ‘if anyone would take her she is planning to move out of this place’. This early morning incident put the icing on the cake of what had generally been a bad day for Maureen.

 I wasn’t surprised when the Occupational Therapist from the Home Treatment Team concluded that Maureen was no longer safe to go out by herself.   She had accompanied Maureen on a short walk and found that she is now at risk when crossing roads.  Maureen didn’t question Yvonne’s judgement or see any problems with her conclusions until well after her departure.  Then it became clear that her memory of being a conscientious mother keeping her children safe outweighs her ability to see that her capacity has changed radically.  I’m sure we have not heard the last of this issue from Maureen’s point of view. 

I can fully understand that my independent wife will be concerned about further limitations on her liberty.  When she wants to go out for a walk now I or others will have to accompany her.  The challenge for me is to maintain vigilance without creating the impression that she is locked in.  This will mean that I will have to keep a track on her movements and lock all doors whenever I need some shut-eye.  Receiving hostile reactions to the place being locked up will be preferable to the risks of her wandering across busy roads and forgetting to look left and right! The good news from yesterday I found another musical gem in a Charity Shop.  Maureen sang along with Bing Crosby for a couple of hours in the early evening:  a double LP for 99p of Bing’s show at the London Palladium.  The sun is out this morning with a Car Boot Sale within walking distance; that  Johnny Ray LP could be within my grasp!

Dementia: Victoria Wood BringsThe House Down

General

We had a magical evening last night singing along with Maureen’s Aunty Clarice for a couple of hours.  I knew I had the evening sewn up when I found a Platters LP in a second- hand shop earlier in the day.  The cheeky owner tried to prize a couple of quid out of me for this gem but I held out for half of that.  After an hour of the Platters we moved onto the Sound Of Music and Les Girls were in fine voice: I have posted a couple of last night’s favourites on my Good Music page.

We moved into our lounge for the final part of the evening as I wanted Clarice to see this gem on YouTube from Victoria Wood:

Victoria brought the house down with this exceptional performance.  She was such a talented artist and a sad loss to all fun loving folk.  We are still watching ‘Dinner Ladies’ on most evenings.

The Musical Evening kept Maureen off the sofa and we retired to bed together around 10.30.  Maureen still woke in the night wandering downstairs at 3am and getting lost. When I managed to get her back in bed she asked if it would be ‘ok if she stayed there until her husband came to pick her up’.

Yvonne the Occupational Therapist from the Home Treatment Team is coming at noon to assess Maureen’s road safety awareness.  I  hope she will also consider if there is anything else we can do to keep Maureen safe around the house.  I kept an eye on Maureen making a cup of tea this morning and she seemed to cope without raising any serious concerns.

Les Girls had a lovely evening together and I’ve now been charged with finding a gem by Johnny Ray as they’ve both seen him live.  The warmer weather should bring out the Car Booters so I’ll be off hunting over the next few days.  I have a funny feeling that I can add a bit of dancing to our next shindig.  How great it would be if I can then move us back to dancing with some of our old friends.  I wonder how Brucie is these days.

Dementia: Very Interesting

General

I listened intently to Maureen last night when she woke up from resting on the sofa. She outlined how everything in our lounge was the same as she had at home but she didn’t live here.  I didn’t challenge her reality just sought occasional clarification on her reality.  The interesting thing is that she recalled this conversation early this morning and attempted to put it into perspective: the mind boggles!

I managed to minimise distress last night and get a reasonable amount of rest.  I went to bed at 10 and left Maureen fast asleep on the sofa.  When I awoke at 1 am she was sleeping soundly.  At 3 am I heard noises on the Baby Alarm and joined her downstairs.  With some gentle encouragement I managed to ease her upstairs into the marital bed and she has slept soundly since.

Sleeping on the sofa in the early evening has now become routine in Maureen’s behaviour.  I’m going to see if another musical evening might just keep her off the sofa this evening.  I have a sneaky feeling that when she is bored the simple option is to lie down on the sofa and ‘rest her eyes’.  The Baby Alarm means that she is relatively safe but what I would give for a night of uninterrupted sleep!

 

Dementia: Not Pulling The Trigger

General

After the events of early this morning and Maureen’s general discontent with being ‘baby sat’ by carers I have cancelled tonight’s sit.  I fear that going out tonight might just be a red rag to a bull and give Maureen another opportunity to vent her frustration.  I’m hoping that an evening of TLC might be just what the doctor ordered and lead to a good night’s sleep for both of us.

Although I am missing my Buddhist meditation class tonight all is not lost.  I managed to spend a lovely hour this morning watching some amazing teaching by Dekyong the Spiritual Leader of the New Kadampa Tradition in the UK on YouTube.

 I know that Dekyong and others would see my decision as an act of kindness.   Leaving Maureen in the company of a carer tonight would potentially trigger further distress.

Dementia: A Sense Of Perspective

General

It’s 3.40 am and I’m paying for a mistake I made last night.  Shortly after ten I took up a kind offer from Maureen’s youngest son to contact him when she is adamant she doesn’t live here and I’m not her husband. The phone call had an immediate impact with Maureen going to bed but it has backfired this morning with a bitter vitriolic attack about the type of person I am.

This morning has been a stark reminder to accept Maureen’s reality: last night’s remedy was ill conceived and naive.    From now on if she wants to remain on the sofa and wait for ‘her husband to take her home’ that’s fine.  The Baby Monitor will be on and I will take to the spare bedroom on red alert in case she wakes in a confused state and panic sets in.  I have to let Maureen sleep wherever she wants and try to find a way of getting rest myself.  The solution to all of this is adjusting to Maureen’s presentation and accepting her reality.

I made a second foray into looking at Care Homes yesterday. The place I visited was certainly preferable to the one I saw the day before but was a stark reminder of what lies ahead.  I became rather sad in the afternoon that dementia has robbed us of a long and happy life.  

An Email from a very dear school friend gave me a sense of perspective this morning.  Pete passed on very sad news that his son had been killed in a motor bike accident.  I know that Pete and Dot’s faith will carry them through at this difficult time in their life.  My thoughts are with them in Brisbane today as they cope with their son’s memorial service.  All I have to contend with this morning is another day when ‘Mrs Dementia’ may surface for some of the time but I still have the luxury of Maureen being beside me when dementia is not calling the shots.

Maureen woke again at 5 am requesting her first cup of tea of the day.  She is now happily tucked up on the sofa.  I hope I can have the courage not to challenge her reality again!

Dementia: Using A Four Letter Word

General

I was really pleased last night when Maureen used a four letter word I had told her to yell out whenever she needed help.  When I heard her shout ‘PAUL’ at the top of her voice I knew I had to get downstairs as quickly as possible.  She had woken yet again from sleeping on the sofa frightened that she had been left alone in the house.  Thankfully one of my ideas to reduce distress had worked: I have been working on another this morning.

Maureen woke at 4 am this morning and went downstairs to make a cup of tea.  She returned empty handed with hair brushed but no tea.  When I went downstairs a little later the kettle was filled but had not been switched on.  I’m not sure if she has forgotten how to make tea or that she wanted a drink. I soon put matters right and made a cup of tea that has warmed Maureen up and allowed her to go back to sleep.  As I have had 7 hours or so in bed I have decided to find some missing items and make one or two changes around the house.

The bolt has already been taken off the door of the utility room; the one of the bathroom is a little more obstinate.  It will be off shortly and prevent another episode of ‘Oh dear what can the matter be’: Friday’s episode of Maureen being locked in you know where.  With Maureen’s presentation changing so rapidly it’s difficult to keep on top of what needs to be done to maintain her independence yet keep her safe.  How ironic that someone who has always been averse to using profanities is now happily using four letter words.

There are often times when Maureen doesn’t know who I am: apparently there are now several Paul’s in her life.  What I hope is that when she shouts for ‘PAUL’ he helps her to to feel found as conveyed in this poem:

into dementia An insight

 

I think I’m here but I’m not

My route to the facts are all blocked

Places don’t sound right

And people don’t sound right

And I don’t sound right

And what is the answer, the ‘right’?

My mind is all twisted around

Then suddenly, from the fog, you appear

And straighten it out from the weird

The answer? For now, I AM found

Poem courtesy  of Terri at Academy of NHS Fabulous Stuff.

Dementia: Looking Back: Looking Ahead (Week 15)

General

Our Care Agency came up trumps yesterday when I was feeling unwell by arranging an additional sit at short notice.  I’m not sure I would have coped if Chloe hadn’t been here to take Maureen out for a walk and give me a break from my caring role.

My predicament yesterday gave me a sharp reminder of our vulnerability in an emergency: with family at least 100 miles or more away.  It would be silly to put off looking at Care Homes that offer respite any longer.  Apparently it’s never too late to be a Boy Scout and I need to be prepared and know somewhere suitable for Maureen to go when respite is needed. I might not have time on my side the next time so my research begins this morning