Tag Archives: Distress

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Lost, Bewildered and Frightened

Mixed Dementia,

Image result for Lost Bewildered and Frightened Picture

Maureen seemed totally lost late yesterday evening and I encouraged her to sleep it off. She reappeared from her nap after a short while and was completely lost in her surroundings despite my efforts to ground her.  When it was time to bed down for the night it took a long time to settle her on her choice of the sofa.   She has been awake several times during the night complaining that the people here are trying to frighten her and she can’t wait to get out of this place.  At 5 am she was struggling with a dry mouth and wondering if someone else was needed to help her with medication.

The coaching on medication went relatively well yesterday but it threw up all sorts of anxieties for Maureen about getting it right.  One thing it did address was just for once I was sure her tablets were taken.  There has often been evidence that Maureen has not taken her medication and yesterday I found more tablets in places where they should not have been!

There are a couple of things I’m going to try today in an effort to change Maureen’s presentation.  Firstly, I’m going to ask one of her sons to issue a rallying call for immediate family to schedule regular contact and visits.  Maureen’s continual question about where are my family needs to be addressed.  Secondly, I’m going to try to change her environment by encouraging activities that remove her from the sofa unless she is clearly in need of further rest.  Rachael Wonderlin has posted a video clip on her blog that will help me focus on this mission:

Dementia: Feeling Neglected and Stupid

Mixed Dementia, Uncategorized,

Image result for Feeling Neglected and Abused Elderly Woman Picture

Several people heard Maureen giving it to me yesterday and a common response was ‘I can hear what you are up against.’  I appreciate their empathy but they have no idea what it has been like lately: particularly during Storm Maureen. What they also fail to understand is their contribution to Maureen’s distress.  A frequent question from Maureen is where are my family; why don’t they come to see me?  The other burning issue for her is ‘why are people treating me as if I am stupid?’  This is her reading of how most professional staff are dealing with her.  I am at one with her on both issues.

Last night I asked those family members who are in contact to visit more often.  They assured me they will do their best to address Maureen’s feelings of neglect.

On Monday I will request an urgent meeting of the Multi-Disciplinary Team to address our concerns.  I will also suggest that certain professional staff not to darken our door until we have met.

Maureen was in great form at our YouTube Party from 2 until 4 this morning – I wish I could share pictures how much she enjoyed herself – my wife was back for those precious few hours.  She is still here after further sleep three hours later looking forward to an omelette full of good things to drive away any signs of a water infection.

As she has always asserted when she has been in a Care Home ‘those people are behaving as if they are stupid because they are being treated as if they are stupid!’

 

Dementia: The Storm Rages On

Mixed Dementia, ,

I thought I had weathered the worst of ‘Storm Maureen’ by 2.30 am when Maureen had dropped off to sleep.  Music had quelled the initial onslaught with songs from Peter, Paul, and Mary on YouTube:

The focus of the storm changed from thieves stealing Maureen’s car to searching for her missing mum when she woke around 3 am.  Two hours later she was ranting over the need to move out as everyone was ignoring her here and the house was too cold.

I’ve decided to move out myself this morning to Cleethorpes Leisure Centre, as I need to rejuvenate myself in the Spa and the Sauna.  It’s fortunate that Girl Friday is on duty again this morning: Maureen desperately needs one of her Pamper Days.

It wouldn’t need much thought to work out which song would be on my Good Music page today.

Update: On taking Maureen her first cup of the day at 7.45 am she has a simple question: ‘where is this big family of mine?’  She has forgotten her son was here two days ago but she knows that her visitors are now few and far between – a familiar tale for those who have dementia!

Dementia: Taking The Bull By The Horns

Mixed Dementia, ,

Image result for Taking The Bull By The Horns PictureI am planning to go for it this morning with an emphasis on distraction and redirection.  In the heat of the battle yesterday, I forgot a basic that any apprentice Care Partner should have grasped by now.  For a while, I foolishly tried to reason with Maureen to establish that I was a good guy.  Where on earth I expected logic and reason to appear from after all this time I will never know.   Such qualities have long gone and when abject fear took over the going got really tough.

I should have known that two strangers from the Local Advocacy Service probing Maureen about what she would do if I wasn’t here would spell trouble.  I could have anticipated that fear would eventually lead to her turning on me as the driving force for the probing questions. However, I was taken aback by the force of Maureen’s reaction and failed to apply distraction and redirection techniques.  It took telephone coaching to put me back on the straight and narrow and for Mrs Dementia to be put under pressure and for glimpses of my loving wife to return.

So this morning I have a cunning plan to take the Bull by the Horns.  Maureen’s son will be here around 10 am and I going to involve him in the Birthday Mission.  If all goes well we will go into Grimsby to help Maureen solve her inability to access her own money.  Our first call will be her bank so she can cash a cheque and order a new pin number for her debit card.  Then she will have cash in her purse: a common complaint is that she hasn’t tuppence to her name. Our next call will be for her to buy the ‘old man’ a card and a present for his 71 st tomorrow.  If she wants to get me a surprise I can leave them to it and wander around Grimsby by myself for a while.

If my cunning plan doesn’t work I can always play ‘More Than Words’ tomorrow morning as a reminder of the good old days:

This was OUR SONG in the early days of being together: if Mrs Dementia surfaces tomorrow she can Take That!

The context for my bright ideas this morning is that Maureen has been wanting to go home since 3 am.  She wants to live with her parents again, where there are no thieves stealing her clothes.  I have listened to her concerns and tried to put her mind at rest to no avail.  I attempted to distract her by talking about the impending visit of her son; with unfortunate consequences.  I listened to a diatribe about him for quite some time.  She doesn’t know ‘what he looks like and knows nothing about him as he never comes to see her.’ Her disappointment about the diminishing level of contact with her family is palpable.  She has been pleading with her daughter who died some time ago to come back, as she was a real friend.

Around 5 am I decided to give Maureen some space – hoping that the passing of time would lead to a change in her presentation.  My hunch paid off and by 6 am she came to tell me: ‘she didn’t know what she would do if I wasn’t here’.  It will be interesting to see how she presents when her son arrives.  One thing for sure, I will need our night sitter on duty tonight so I can try to catch up on a bit of shut eye!

Dementia: Biting My Tongue

Mixed Dementia, ,

Image result for biting my tongue picturesI’m getting better at not responding to Maureen when she is being downright objectionable.  Last night was a classic: I’d been doing my best to help calm her sore throat and mouth and she challenged me when I woke after a nap with ‘what are you creeping around for’.  I wanted to say remember me I’m the guy who brought you ice cream a couple of hours ago to try to reduce the pain in your mouth but I decided to say little and let sleeping dogs lie.  This meant leaving all our plans for the evening on hold apart from Maureen’s version of crosswords.

Maureen woke me shortly after midnight to warn me there were insects in the room.  She was afraid to put her foot to the floor for fear of being bitten.  It took me a while to wipe the sleep from my eyes and find a way through her concerns.  Eventually, I persuaded her that we would be safer upstairs in our bedroom where I was sure we would not be troubled by insects.  I slept fitfully after this event and got up very early to carry out some household tasks alongside thinking about how to make our lives simpler.

At 6.30 YouTube is on with the old favourites bringing a smile to Maureen’s face. I’m optimistic that we will be watching a film on Enid Blyton tonight.  I guess there are not many people watching The Famous Five rather than East Enders these days but reminiscing leads in all sorts of directions.

If Maureen continues to struggle with a sore mouth further medical advice is needed.   I’m beginning to think that a swab is needed to establish the nature of her infection. The soreness in her mouth and lips is a chronic problem that causes considerable distress and visual inspection by the G P doesn’t seem to get her anywhere.  Unfortunately, there would be little point in asking him to address her caustic comments:  we already know that dementia takes no prisoners and those close at hand frequently bear the brunt of her frustration.  The only remedy for this aspect of dementia is for me to bite my tongue and keep my mouth shut!

 

 

Dementia: The Capacity for Love

Mixed Dementia

Related imageI feel better now I have raised my concerns about the way an assessment of Maureen’s capacity to consent to sex was being handled.  It felt uncomfortable that I could be accused of rape if the interviewer established that she didn’t understand the implications of ‘having sex’.    My concern was with both the language being used and the intrusion into our married life.  Just to clear up any misunderstanding here, in my opinion,  married couples don’t need to have sex – they make love. Thankfully, those concerned have belatedly accepted that we are in a loving relationship and feel no need to progress such investigations.

There is no doubt that Maureen lacks the capacity to remember that tomorrow is Valentine’s Day.  My solution to avoid any embarrassment is quite simple: to continue with what we have done for years – recycle old cards.  All I have to do is find the cards we have sent to each other in previous years and both select the one that we want to reuse tomorrow.

It’s my 71st birthday on the 23rd of this month so recycling of cards will be repeated once again.   There will be no sweat over presents, as I will repeat to Maureen what I have said for years: ‘her presence is my present’.   To those who have responsibilities under the Mental Capacity Act, I can assure you we will not be having sex tomorrow or on my birthday!

 

Dementia: A Silly Mistake

Mixed Dementia,

Image result for A silly mistake pictureI made a silly mistake yesterday and paid a heavy price. Maureen’s presentation in the afternoon and early evening became as challenging as I have ever experienced.  I should have spotted the signals early on when she just couldn’t settle down and said she didn’t know what to do.  Unfortunately, I ignored her as I listened to Coventry City’s attempt to prevent the inevitable relegation to Division Two.  Then once we were 3-1 down the battle here began to intensify until it became almost unplayable as the evening progressed.

Maureen’s first solution was to try to escape from her confusion and a neighbour brought her back as she strayed onto his drive.  Then she was trying to find non-existent children that had left their belongings here earlier in the day.  We even called in next door to see if the missing charges had found their way there: despite being aware that their offspring had long left home.  On our return home I examined what Maureen was anxious to return a blanket wrapped around a small tray, the contents of a large box of tissues, and a shoe.

Confusion and abusive accusations then reigned for a couple of hours as Maureen hurled abuse at her despicable husband.  Most of what was said had no significance or relevance to our lives together – Maureen appeared to be time-travelling through deeply held resentment from a previous life.  During a break in hostilities, I phoned a family member to suggest that a call might help to ground his mother in a more supportive reality.   However, exhaustion had taken over as Maureen had taken to the sofa and was fast asleep when I returned downstairs.

One further lesson from early this morning is to ensure that Maureen never sleeps in total darkness.  She awoke this morning terrified that shapes were animals that would do her harm.

If things go according to plan today Maureen will be with Girl Every Other Sunday from noon until two and I will bask in the Spa at the Leisure Centre.  A siesta in the afternoon should help us both.  The most important thing today, however, is to avoid the silly mistakes of yesterday!

Dementia: Feel The Fear And Do It Anyway?

Mixed Dementia, ,

Image result for Feel The Fear and do it Anyway PictureAs ‘Girl Monday’ was off sick yesterday I tried something a little different. We needed some basics so Maureen came with me to Aldi where she seemed ill at ease, despite almost skipping around on our last visit.  When we were putting our purchases in the car she said ‘she felt useless; as she was no longer capable of shopping alone’.  She recalled earlier days where she filled up the shopping trolley alongside adding up the cost as she traversed the aisles in supermarkets.

We chatted as we made the homeward journey and I decided on some action as we neared our fishmongers.  I stood outside his shop with tears in my eyes watching Maureen chatting confidently to the owner as she took advantage of today’s Special Offer: ‘Three pounds of haddock for £10’.

During the afternoon Maureen couldn’t settle and frequently came to find me if I was out of sight.  Her shadowing became intense as the evening approached and she often sought a hug telling me how frightened she had become.  We retired at 8 pm as we were both exhausted and during the night she found me after I had moved to the spare room.  She shared her fears that ‘some people had invaded the house and were cutting up clothes’.  At that juncture, she followed me into the bathroom and closed the door behind her at a time I would normally enjoy some privacy.

I shared my concerns about Maureen’s current presentation with certain professional staff yesterday and adjusted some plans accordingly.  Our social worker was on leave and will be aware of my need to speak to him this morning.  Maureen struggled last week with Wednesday’s overnight sit and we will need to review our plans on that front in light of the fear factor.  This may not be one of the occasions to take a leaf out of the advice in the above book but the author may not have been taking dementia into the equation.

I have broken off completing this post to make Maureen a cup of tea.  She has ended up contesting the restrictions on her right to roam.  I accept she has a point and I disagree with the doomsayers that she is not safe when she is out by herself.  This is something I need to explore with others urgently.  Why keep Maureen under lock and key and be seen as the Bad Guy if this is not really necessary?

Footnote: 10.15 am I have just sent Girl Tuesday home she has a dreadful cold and we can’t risk either of us catching her infection.  How on earth carers are being sent out to work with vulnerable clients in that condition defies belief!

Dementia: Thank Goodness It’s Monday

Mixed Dementia, ,

Image result for Thank Goodness It's Monday Picture

This morning I have the opportunity of reviewing how things are going with Girl Monday.  She is our longest serving carer and is used to dealing with the fluctuations in Maureen’s presentation.  However, she has been on holiday for a week and even she may be taken aback by what she sees this morning.

Maureen had a lovely few hours with her son and granddaughter yesterday.  It is possible that we encouraged her to do too much and tiredness could explain the dreadful night that followed.  This morning she has returned to the theme of her memory:  she is either terrified by what she can’t remember or resorting to a reality that would not be shared by anyone else.

As always I have no idea what is behind Maureen’s presentation and when it is opportune I will attempt to rule out any medical issues.   My guess would be that panic is a factor induced by compassionate confrontation from the Care Coordinator, and myself, that denial is not helping Maureen to make the best of her life.

Footnote: Received a phone call at 9.30 am to let us know Girl Monday is ill.  Have advised the Care Agency not to send anyone else as a newbie would add to Maureen’s confusion.