Category Archives: General

Dementia: Playing ‘Musical Beds’ Again

General

Maureen spent most of the yesterday either in bed or sleeping on the sofa.  When it was time to retire around 10pm we started off in the marital bed together: eviction to the spare room took place at 2 pm and we were back together at 5 am.  This has prompted me to think of two tunes that could accompany our night time ritual of ‘musical beds’.

Maureen’s would perhaps be:

I would go for:

This morning we have a new carer to induct into the Collins household.  Charlotte will be here at ten for her first visit as Mary has moved onto night ‘sits’.  As Charlotte may become our regular ‘Girl Tuesday’ I need to manage her introduction carefully.  I think the safest approach is for her to be our ‘Shopper Lady’ by sending her out to top us up on a few basics and then become a ‘Cleaner Lady’.

I will also ask Charlotte to buy a new microwave as our experiment without one is over. Trying to reheat food with a conventional oven is not working and I paid the price for Maureen’s cool lunch yesterday: the ‘cold shoulder’ for much of the afternoon:  my attempt to atone with fish and chips from the local failed and only served to remind us of why we both prefer home cooking.

The first few calls of any new carer have to be carefully handled as Maureen can take an instant dislike to any new kid on the block: if she wears perfume or is too pushy she is doomed.  However, if Charlotte’s initial foray is to put more food in the larder and help me to make sure meals are hot rather then she has a sporting chance to become a hit.

New faces are the price I pay for resisting Direct Payment as I am reluctant to become an employer.  Using an Agency has its benefits and generally ours is as good as it gets, with a team of workers who try their best to be supportive.  I will stay close by this morning and try to help Charlotte to become the final piece in our jigsaw of care.

If things pan out in a positive manner today I might encourage a social call at our Short Mat Bowls Club this evening.  Maureen was always popular with the Bowlers and a move to rekindle those friendships might be timely.  Some form of activity in the evening has to help us to move on from dozing in front of the ‘goggle-box’: there are only so many repeats anyone can stomach.

Now I wonder if Doris Day or the Police will be Top of the Pops tonight.

 

Dementia: This Is No Time For Attachment

General

If I don’t keep my ‘eye on the ball’ this morning I’m going to cause Maureen unnecessary upset.  As I tried to encourage her to go to bed last night I noticed her engagement ring was no longer on her finger: she responded with ‘perhaps I’ve lost it’.  It’s important for me to take her comment at face value this morning: mention the missing ring and I am likely to cause pointless distress.

It is possible that Maureen’s ring has slipped off her finger as it is far too big following stroke.  However, there is also a chance that she has put it somewhere for safe keeping. What I have to resist is spending hours hunting around the house and garden: something we both did when I lost my wedding ring a few years ago.  After several weeks we declared my ring gone forever and I replaced it with a look alike that cost a few pounds rather than go for platinum again.

Daniel Craig came to my rescue last night and helped me not to absorb Maureen’s distress when she arose from the sofa shortly after 10pm.  She had no idea where she was and desperately wanted her mum.  My struggle to settle her took some time; particularly as she had no idea who I was or what we were doing in the same house together.  Watching ‘Sky Fall’ provided the distraction I needed so I didn’t absorb Maureen’s upset and hostility: yet again I still didn’t see if James got the baddies!

Maureen woke at dawn this morning looking for ‘the others’ and wondering if she was going to be ‘left alone for the day’.  It looks like being her ‘Tea Boy’ has helped her to feel safe rather than be afraid of being alone with me in the house.  I’ve tried to ground her with thoughts of searching for more LP’s at the Car Boot Sale just down the road.  I hope I can persuade Maureen to accompany me this morning: who know we might even find one by Johnny Ray to remind her of that live show when she was a teenage ‘Groupie’ waiting eagerly at the stage door for his autograph.  

Now I wonder if I can practise what I preach with some early morning meditation on the dangers of attachment:

Dementia: Effective Home Treatment

General

I met with Gilly the manager of the Home Treatment team shortly after noon yesterday.   At my request we met for half an hour and we explored the challenges of my caring role. She helped me to put what had been happening over the last few weeks into context and I left the meeting with a resolve to face what lies ahead with confidence.

We are very fortunate to have such an informed Team of workers on our doorstep.  It is very reassuring that when the going gets tough help is at hand and a ‘rescue remedy’ will be on offer.  What I particularly like about the approach of the Home Treatment Team is their holistic approach to a crisis.  In our case the problem was my exhaustion: it was fuelling the changes in Maureen’s presentation.  This ‘trigger-happy team’ soon sussed out what was going on by looking at causes of our crisis: rather focusing on Maureen’s presentation.

Gilly was very thoughtful in helping me to reflect on what had sparked the crisis.  Her message to me was quite clear: use the additional ‘sits’ that are on offer for ‘me time’; don’t fall into the trap of thinking you can be an effective Care Partner without adequate support.  Although our current crisis is over Gilly made it clear that the door is always open if the going gets tough again.

I hope today’s post will be an acceptable way of registering my comments through the PALS system on the effectiveness of the Home Treatment Team .  We are very fortunate to have such a skilled team of professional staff in North East Lincolnshire: sincere thanks to you all.

 

Dementia: Tiredness Takes Its Toll

General

We were both exhausted when we returned home last night after our day trip to Coventry.  Not at our best our tiredness almost spoiled what had been a very enjoyable day. 

I was amazed how Maureen managed to keep going for the whole of our away day.  For over 12 hours she stayed in Hostess Mode keeping ‘Mrs Dementia’ at bay until she stepped through the front door on our return home.  Then almost as soon as we turned the key that ‘wicked woman’ returned with a vengeance.  After taking refuge in the downstairs toilet for half an hour she reappeared as ‘you know who’ and let loose with all guns blazing.  

At first I struggled to cope with her presentation until I realised she was only expressing a familiar reality.  Once my tiredness, along with frustration, ebbed  I got to grips with her reality of being brought to a strange place against her will. Why should she be happy when she had been taken away from her family and friends?  After all she has no happy memories here only vague recollections of tragic events in her life.

We always try to accentuate the positives and there were many from yesterday with Maureen really enjoying spending quality time with her eldest son.  I’m not sure my mum enjoyed such a positive time with her’s as my visit must have seemed rushed as we tried to beat heavy traffic on our homeward journey.  She is used to seeing me alone and having my wife and daughter in tow may have been confusing.  We responded to her request to ‘take her out’ but it may have been rather late in the day as she fell asleep on the way back to her Care Home.

I need to create some quality time with my mum and daughter as soon as possible.  My change of plan made that impossible yesterday. One thing  for sure is my ‘flexible friend’, Sue the Social Worker, will soon sort out my next day trip so I can compensate for what my mum and daughter missed out on yesterday.  Sue will also applaud that I manged to persuade Maureen to make a day trip to Coventry and spend quality time with her son.

Footnote: ‘Maureen’ is back in residence this morning singing beautifully in bed as she samples her first cup of tea of the day.  I’ve just realised she is singing a track from one of our latest vinyl bargains:

Maureen has just thanked me for doing all the driving yesterday; commenting ‘it was a lovely day’

Dementia: Holding My Nerve

General

The next hour or so is going to be very tricky but I simply have to attempt to hold my nerve after another difficult night.  Maureen has been up several times since we went to bed which is rather surprising after a busy day without any siestas.  She has been frightened during the night by her fears that there are animals in the house.  It has taken a lot of reassurance to get her back to sleep.

My coach leaves for Coventry just after 7 am and it is tempting to change my plans.  It wouldn’t be the first time I have postponed or cancelled visits to see my family but this time I need to keep to stay strong. Maureen will be well cared for in my absence and her son will be with her for a significant part of the day.  If I back off now my plans to develop a life of my own alongside being a care partner will be in tatters and the support I have received from professional staff will have been wasted.

As I finish this post I just wonder if it is worth trying to tempt Maureen to come with me and travel to Coventry by car.  I just wonder if I’m losing my nerve already or if this is a viable option?

Great news: what a brave wife I have we’re off together shortly!

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: ‘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.