Category Archives: General

Dementia: Room For Optimism

General

I’m feeling a little more optimistic following the events of yesterday evening.   It is more than just having a reasonable night’s sleep: 

Our day had been mixed: full of life’s ups, and downs on this unpredictable journey.  One thing that became evident was Maureen’s willingness to share her insight into her condition: on several occasions she mentioned her fears and anxieties.  I struggle to conceive how my extremely capable wife copes with feeling inadequate on so may fronts. All I hope is that my line of: ‘accentuating the positives’ doesn’t sound too patronising.

Sometimes it’s amazing what can lead you in a positive direction when dementia calls the shots.  Maureen had been struggling with something stuck in her teeth for most of the afternoon, and we were out of dental floss.  A chance trip to Tesco solved our dental mini-crisis and much more.  The store was relatively quiet, and Maureen mentioned afterwards that it was the first time she had felt comfortable in a supermarket for ages.  Then my time filler of seeing the lights on the prom paid dividends.   As we watched the light show Maureen enquired if we were going to see her Aunty?   Our visit to see Clarice  led to confirmation of something we need to address as we continue on our travels.

Clarice should be an ally for two newcomers on this road: she is something of a seasoned traveller whose life has now taken a new direction.  Dennis her husband is coming to the end of his journey with Alzheimer’s in a nearby Nursing Home.  Maureen and Clarice have always been close: once they get going they can be like excited schoolgirls.   More importantly Clarice is ‘dementia friendly’ and Maureen is comfortable in her company.  The other advantage is she is a talker so Maureen can sit and listen: that is her only option!  So they enjoyed their time together, while I ate the proffered cake and listened

As my ‘Sleeping Beauty’ has arisen from her slumbers this morning she seemed in good spirits as she declined tea until a more respectable hour.  I have no idea what the day will bring.  What I need to do is supply lots of TLC, and continue to seek company that is ‘dementia friendly’.  Imagine what it must be like when other people feed your anxieties about your limitations?

 

 

Dementia:Put At Risk By Exploited Carers

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I have declined the opportunity to get way from things this morning.

Maureen remains very frightened: she is worried I will get fed up with her and clear off.  Therefore, I decided to send our carer off shopping this morning so that I could stay close by: a very wise decision in the circumstances.

When Chloe arrived I knew I had made a sound decision: she has a chest infection, and is on antibiotics.  We have had this issue before with a previous carer.  However, it seems par for the course that carers go into the homes of vulnerable clients when they should really be off sick.  This is another example of poor conditions of employment, with no sick pay, which are not in the interest of clients.  You just wonder sometimes what it will take to sort out this mess?  Why on earth is such a valuable resource to vulnerable adults provided on the cheap?

Dementia: ‘This Is Not Sustainable’

General,

Sometimes it takes a stark comment from someone else to help you take a reality check on a situation I was recounting to Maureen’s youngest son that I was following her down the road after she had just told me: ‘I’m going to go out and look for Paul’, when he commented: ‘this is not sustainable’.  He makes a fair point: I need additional support to cope with Maureen’s current presentation.

Three, three hour carer sits is no longer adequate as Maureen’s condition continues to take a turn for the worse.  We have no idea if this a temporary dip or further decline.  The positive thing is that Sue, our social worker recognises the need for flexibility in our Support Plan. It hasn’t helped this week that Christmas Day deprived us of carer attendance, and New Year’s Day is likely to do the same.

As today is a Bank Holiday I have to tough it out until Tuesday. Thankfully I have some help today.  There is so much going on at the moment that it is difficult to know what to do for the best.  One thing that appears to be happening is that Maureen’s confusion is now frightening  her.  It’s no longer just a question of her not knowing who I am: she is now frightened by her poor memory.

Yesterday evening she broke down as she told me of her fears of strange men in the house, who are continually trying to get into bed with her.  She said these fears arose when she was in hospital, when she heard groups of men discussing their plans to get into the beds of confused women.   Her recollection was of men suggesting that they could tell medicated females they were their husbands’, and be able to take advantage of their confused states.  A little later on she admitted that she was often unsure which Paul I was out of the ‘teacher’, and her ‘husband’.

Early this morning Maureen has woken up distraught, once again, that she is late for school .   I tried to settle her with a drink, and gathered following an enquiry about the state of her sore mouth that she didn’t see me as her ‘husband’.  I therefore, retired to the spare room.  At 2 am Maureen is up and about tidying up in the marital bedroom: it looks like another long day.  The good thing is she is taking the benefits of being bilingual seriously, and singing a song in French about a cuckoo in the forest.

I plan to be on the phone on Tuesday morning to both my Admiral Nurse, and our social worker to discuss Maureen’s presentation.  Listening to Willie Nelson  helps, and lots of other strategies keep us ticking along but Maureen’s behaviour continues to be extremely challenging.  Confusion about day and night has been around for a while but early morning wakening is now creating unhealthy sleep patterns.  More is needed on several fronts to minimise Maureen’s distress, and I need additional support reduce the chances of Care Partner burnout.  This is  an unforgiving journey and we are fortunate that we now being supported by a social worker who is a dementia specialist.

Dementia:Time For A Change of Scene

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I have no idea what is going on at the moment with constant changes in Maureen’s presentation.  It is another day until I will have respite from being on duty 24/7: Chloe, one of or carers, will be here at this time tomorrow.

I am hoping that I can cajole Maureen into going out for a walk, as it is a sunny day here in Cleethorpes.  It will be interesting to see if a change of scene helps in any way.  I could certainly do with getting out, and the odd word with someone who is not struggling to deal with the impact of dementia would be a welcome relief.

My left shoulder is really giving me grief at the moment, despite following the recommended exercises.  If I make tai chi in the morning I will have to be very careful I don’t cause further problems.  Perhaps, the Leisure Centre is a safer option in the warmth of the spa and sauna: oh the thought of it!

Dementia: Early Morning Routine

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It’s 5.45 am and we have been up for a couple of hours.  Unusually, Maureen beat me too it this morning and was downstairs while I was still asleep.  I found her in the lounge sorting out the zip on her cardigan again: something she had been doing for half an hour on the previous evening.  After another ten minutes or so she put the cardigan on and zipped it up.  I am feeling a little out of my depth here, and will have to see where this new pursuit leads.

We had a short dance in the lounge yesterday evening, and I returned to this theme earlier on with YouTube.  Watching dancing on the T V held Maureen’s interest for a while, and we chatted about creating a dance floor in the lounge.

Using the Lap Top is causing Maureen to be distressed so I have to shut down.  I am in new territory here as Maureen’s presentation is changing radically.  More later – perhaps.!!!!!

Dementia: It’s Tai Chi For Me!

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I have already posted this morning on Willie Nelson being one point in a strategy to help us through this hazardous journey.  I am pretty confident that stepping out to the Rumba in the kitchen can only help Maureen recollect who I am.  In fact I have already been prancing around the bedroom to Dolly Parton, and 0ne or two others.  YouTube is part of a wake up routine to help ground Maureen in the morning.  However, something more is needed to keep your truly on track as the challenges of dementia come thick and fast: tai chi is the answer.

We have attended tai chi classes on an intermittent basis over the years.  The routines have helped me to restore much needed flexibility into my stiff old frame.   They may also help me to remedy with the problems I have with my rotator cuff in my left shoulder.   Fortunately, they take place on Monday and Wednesday mornings, so they fit in nicely with carer sits for Maureen.

Tai chi is a sort of moving meditation which will be of real benefit at the moment.  It will help me to calm my mind, and put me in a better place to address the daily challenges of this journey.  Once I sort out my sleep pattern I also plan to return to Buddhist meditation classes.  Both activities are patronised by really caring, and supportive, folk: something that I really need as this journey progresses.

 

Dementia: Willie Nelson To The Rescue

General,

Maureen slept for most of Christmas day.  I woke her for meals, and we watched the last episode of Dinner Ladies.  I managed to keep callers at bay, apart from a brief telephone conversation from Maureen’s youngest son.

Just as we were going to sleep we talked briefly about Maureen being uncertain about who I was.  Once in bed her reticence towards me was explicit.  I made it clear it didn’t matter, and it was something that would pass.  Then this morning it came to me: we will dance our way back to closeness.  Maureen will eventually remember me as her dance partner – after all we have Gold Medals for Latin and Ballroom.

As I came round in the morning I thought: I’ve got it – the Rumba one of our favourites.  Then I thought hang on a minute Willie Nelson will do it for us: his version of ‘No Mas Amor’ is just the ticket!

Click here  and think of us as we Rumba our way back to being husband and wife – in the kitchen of course!

 

Dementia: Plagued By Fear Of Men

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I would welcome suggestions on how to handle my latest dilemma:

Early this morning Maureen sought assurances that I had been in bed with her.  She knew a man had been in her bed but didn’t know who he was.  She said she was afraid to move in case he attacked her.

An hour or two later she appeared downstairs scared out of her wits.  She had a vision of a man in the loft about to open the trap door, and join her in bed.  Despite my reassurances she spent some time seeking explanations for what she had seen; searching the house to see where the man had gone. Eventually, she gave up her search saying: ‘I must be going mad’.  Those who know Maureen know where this fear of men originates: it would not be kind to remind her of ghosts from the past.  The initial advice I have had is that it is too for Maureen to have therapy about her fear of men.  However,  I intend to consult professional staff once again on this matter.

My problem is if I join her for an early night I am often up an about early in the morning, leaving Maureen to sleep on.  When I delay going to bed my entrance into the bedroom sparks fear, and often leads to screaming.  It also seems that if she wakes in the night she is unsure who is beside her in bed, and worried about his intentions.

Perhaps this is a passing phase and all I need to do is tough it out.   Just to be on the safe side I am open to suggestions that might reduce the potential for distress, as we continue on this hazardous journey.

 

 

Dementia: It’s Christmas – Time To Ring The Changes

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I looked at my wife on Christmas Eve at 5 pm, as she stood in the kitchen, and wondered about the outfit she was wearing.  She has always dressed well for any occasion but this evening’s outfit was rather different.  Her pink striped T shirt didn’t look out of place with her purple P J pants with white squirrels on.  Her footwear consisted of: one tan slipper the other blue, with ‘matching odd socks’ of pink and purple.  As I took in her appearance I wondered why no-one had tipped me off about tonight’s Fancy Dress theme.  I also wondered how her choice of outfits might change in 2016.

I mentioned in the Yesterday’s Blog  that Maureen and I have always seen presence more important than presents at Christmas.   We are not hoping for family to visit today: we know it won’t happen.  They all live a fair distance away, and are having Christmas at home.  However, what we need from them is to understand how to communicate with someone who has dementia.  The last thing Maureen needs is long phone calls listening to their problems, combined with questions about her activities.  My attempts to help them understand how to keep their telephone conversations brief have fallen on stony ground.   It’s a shame I can’t video the impact they have on Maureen once she has put the phone down.

Family members  may well also have missed our rejection of Prescribed Disengagement.  Again it is important to get them on board with our approach to living beyond diagnosis.

I am going to see if I can use today as a turning point in the process of helping family members to become more thoughtful in their communication with Maureen.  I am hoping that Christmas Day will provide a dynamic for much needed change.   Things have reached the stage where I believe we have nothing to lose.

Time to bite the bullet: disconnect the land line and take it from there!

Dementia: Confusion and Grief

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Maureen became very concerned last night that she didn’t remember who I was.  She was reluctant to go to bed because she thought she was waiting for her husband to come home.  Just as I was tucking her up for the night she asked me what was wrong with her?  She was worried that she might need to go back to hospital as, once again, she had lost her memory.   A short while afterwards I heard her crying in bed about all the people who had died: her son, daughter, mother and dad.

I think spending the afternoon with Maeve reminded Maureen how much she missed Denise, her daughter.  As she sobbed she mentioned that she wanted to move on.   I think the time has arrived for me to once agai discuss this matter with professional staff.

My strategy for the remainder of the week is to have a quiet time following a busy few days.  Therefore, I will let Christmas pass very quietly, and minimise any external contact.  The land line will remain off unless Maureen shows concern about lack of contact from her family.