Category Archives: General

Dementia: Spring In The Air

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Yesterday was something of watershed in our journey with dementia.  Spring was clearly in the air as we began to tread a fresh path on our journey.

The first step was taken when I discussed changes in Maureen presentation with our G P.  I was relieved to know that Maureen’s referral back to the Memory Service is underway.  We have arranged to get together with Mel my Admiral Nurse a week on Friday to make sure that the referral has found its way to the Home Treatment Team.

During the morning and the afternoon I encouraged Maureen to help me around the house. I cajoled her into joining me in the kitchen or the garden rather than lying on the sofa ‘resting her eyes’.  I picked my moments to try to make sure I wasn’t seen as the bad guy and gradually she warmed to activity rather than staying on the sofa.

Late afternoon Maureen’s elder son phoned;  he is planning to visit in a couple of weeks.  I managed to have a chat with him to confirm that Dr Munjal feels that changes in Maureen’s presentation are atypical of her condition, and a brain scan is not necessary at the moment.  Shortly afterwards we managed to get through to the ‘birthday girl’ and Maureen sang to her 17 year old granddaughter.

I listened to the delight in her voice as Maureen spoke to the ‘birthday girl’.  The joy on her face brought a smile to mine: was she really taking to the girl who ‘didn’t deserve a card because she never calls or visits’.  It’s fortunate that Maeve is old for her years and would have taken in her stride Maureen’s request to ‘say hello to her mum and dad’.  After all she noticed Maureen’s dementia long before others in the family, so she has got used to her Nana not remembering that her mother has passed away.

We have also made a seasonal change with our viewing on YouTube.  Yesterday we caught up with more of the antics of ‘Terry and June’, with a marathon session after our evening meal.  We had watched several episodes when I suggested it was time for bed.  Maureen said she was ‘still waiting for Paul to come home’.  I was taken aback by her comment as I thought we had been sitting on the sofa together as husband and wife.  Then I had a huge slice of luck or a piece of sound judgement.

As I sat in my office catching up with responses to my Blog Maureen opened and closed the front door.  I gathered that she was looking for me so I bade my time as the search continued.  Then I had a brainwave: I went down stairs and said ‘here I am I’ve been on the computer again’.  Maureen greeted me with some relief: her husband was home again.

We had a relatively restful night sharing the same bed.  Maureen woke on a couple of occasions upset with her thoughts ‘that they were keeping us here against our will’.  Being close by I was able to nurse her back to sleep.  I have learned to be very tentative with any form of physical contact for fear that she doesn’t know who I am, and it will spook her.

Maureen’s younger son will be here in time for me to see the physio this morning.  We have decided to leave his visit as a lovely surprise for his mother: she will be so pleased to see him.

 I have no idea how today will pan but there’s a spring in my step this morning: it’s been a long hard winter.

Dementia: A Stranger In Our Midst

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Gail our usual carer is on holiday this week.  We have never met her replacement before and she has just told me she knows nothing about us.  I have to work very quickly to make sure Maureen is not spooked by her.  Imagine you have dementia and are about to be left with a stranger while your husband goes out.  I cannot afford to cancel my appointment with our G P; I need to update him on the rate at which Maureen’s dementia is progressing.

I wonder what the point was of our social worker drawing up a Care Plan is if it never darkens the door of carers.  It’s fortunate that Chloe and I developed a get to know us guide.  All I have to do is find an opportunity to put it in front of the carer without Maureen spotting me.

This morning has the capacity to spook Maureen and cause need less distress. I wonder what it will take to make our Care Agency dementia friendly: it’s a scandal! 

Dementia: A Taste Of Honey

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Yesterday I tasted it again, the sweet taste of honey: life that is lost with dementia the elephant in the room.  I got my first sample shortly after breakfast when Kevin popped in to catch up with us.  We were both careful and managed to create opportunities for wide ranging conversation.  I’m sure that we took things too far some of the time with Maureen wondering ‘what on earth are they on about now?’.  When Kevin had gone Maureen covered her inability to follow our drift by saying it was the ‘Geordie Boy’s’ accent that threw her.

Around 4 pm Maureen announced that she wanted to get her hair done.  I seized the moment, ushered her down to Mark’s and within half an hour she was in his capable hands.  I returned to collect her on time and the dishevelled ‘old lady’ was no more: now  looking a ‘Million Dollars’ she worried all the way home about the cost of covering up the grey and a restyle.

While Maureen was getting spruced up I wandered around Cleethorpes, at will, for an hour.  The tide was in so I collected the evidence and sent a photo to those who have always needed binoculars to see where the Humber has gone on their visits.  I also popped in to see ‘Nigel the Clock Man’ for a ‘State of the Nation Conversation’.  I always feel comfortable when I’m back in the company of Engineers: we have a common view of the world.

It felt good to have a ‘taste of honey’ yesterday.  The day started well with Kevin’s arrival: we moved from football to politics with the ease.   Mark played a blinder by responding to Maureen’s request for an immediate solution to her need for colour and a trim.  Nigel laid down his tools, welcoming a chat with a like-minded thinker.

All three of ‘the bees’ have two things in common:  they understand dementia from personal involvement and are prepared to support us whenever they can.

 

 

Dementia: ‘Terrors Of The Night’

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It isn’t unusual for me to have problems with my sleep pattern.  Early morning wakening has been a feature of my life for a long time:  when I have been feeling low I have often struggled to sleep and faced ‘terrors of the night’ in many a dark hour.  Fortunately through Buddhism I have learned to control my thinking and deal with bad vibes.  Without such ‘teaching’ I would be in a real mess this morning with two real issues going round and round in my head.

Maureen was downstairs at 4 am this morning.  I heard her fill the kettle then I listened: hoping that I heard the lid go down. I waited but no sound of a boiling kettle.  Five minutes later Maureen returned upstairs with a cold drink of water.  This only confirmed what Chloe, our carer, had seen yesterday that Maureen is no longer able to make herself a hot drink without support.  When I went downstairs a little later I found that the kettle had not even been switched on.

The other thing that is paining me this morning is my left shoulder.  I am aware I have a month to go before I see the surgeon.  If the pain I’m feeling today is to continue surgery will be an attractive option.  Anyone in their right mind would take the risk and hope that surgery does the trick.

There is little point in focusing on the need to be Maureen’s Tea Boy or if I will have my left arm in a sling for a few weeks.  Kevin a friend of mine will be popping in to see us this morning and then we will be able to focus on the ‘real problems’ in our lives.  We both support football teams that need just a little bit of luck.  The ‘Geordie Boy’ needs more points to stay in the Premier League and this ‘Coventry Kid’s’ team need them to get back to the Championship.  That wife of mine will say  ‘Come On You Reds’ as she proudly tells everyone she is a Forest fan.  The one thing we all have in common is we continue to be loyal to team of our birthplace.  We also know football isn’t something worth losing sleep over and loyal people always continue to support each other through thick and thin. 

Dementia: Admiral Nurses = Compassion and Action

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Dementia UK homepageI realise I am very fortunate that we have Admiral Nurses in this area.  When I discussed changes in Maureen’s presentation with our social worker last week she advised me to seek more support from Mel my Admiral Nurse. We have chatted this morning on the phone and I know that Mel will guide Maureen’s referral to the Memory Service to the Home Treatment Team.

Admiral Nurses are a very important part of my coping strategy.  I could not have coped with the challenges of dementia without the support of their services.  Admiral Nurses = compassion and action: it saddens me that they are not available to all Care Partners.

Dementia: Looking Back: Looking Ahead (Week 11)

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The passage below by Ann Napoletan describes how I feel at this moment in time:

Lost-Innocence_web

We have reached a stage on our journey where a comprehensive assessment of Maureen’s presentation is needed.  Her declining short-term memory and dwindling functional capacity is worrying.  Her emotional state is also a cause for concern.

I am hoping that the involvement of the Home Treatment Team will lead to a thorough assessment of Maureen’s presentation and my approach to providing suppor .  Our Support Plan needs reviewing to ensure the ongoing well-being of Maureen and myself.

It is unfortunate that at a time when we need more involvement of carers our Agency has a shortage of personnel.  Perhaps they need to review why there is such a high turnover of staff when their service users are crying out for continuity of carers.

 

Dementia: The Right To Roam

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Maureen has been off on walkabouts again today.  This time she told me she was just going for a walk around the block.  She returned almost an hour later escorted by a lady who had helped her to find her way back home.  By lip reading I confirmed this kind woman had realised Maureen had dementia and thought it necessary to see her safely to our front door.  Maureen thought she was a policewoman ‘one of the constabulary who are keeping her under surveillance’.  As Maureen said ‘it must be better than dealing with criminals all the time’.

Almost as soon as Maureen was off on her travel this morning a neighbour knocked on the door to tell me she was on out.  We are fortunate that so many people around here help me to keep a check on her whereabouts.  It must be difficult for them to understand why I let her wander: the answer is quite simple she says she often feels like a prisoner so my inclination is to set her free whenever it seems appropriate.  Locking her in and treating her like a child would be a regressive step IMHO.

 

Dementia: Thank Goodness For Gary Lineker

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This post was written last night and will be circulated on Sunday Morning:

I’m glad I’ve got Match of the Day to watch in half an hour.  Maureen has just denied me of my hat-trick as she wants the bed to herself as she is too hot to have me in beside her. Then just as she is getting ready for bed she tells me that there are men sitting in her car staring up at her.  Just to put her mind at rest I went outside to assure her that there was no-one in the car.  Unfortunately, she is still very unsettled as she believes that this has happened before and other people are using her car.  She says she needs the car for Paul to drive her around as her dad can’t drive.

I had intended to go to bed early tonight but I need time to settle myself after seeing Maureen so frightened: Lineker is the man for that.  Maureen hasn’t had a bad day but on occasions she has been sitting with a very worried look on her face.   I have delicately tried to get her to share her thoughts and she has said she has forgotten what she is thinking about.

I’m hoping that the referral to the Memory Service will lead to involvement with the Home Treatment Team:  when they were involved before I was impressed by their approach to dementia.  Their involvement might give Maureen an opportunity to open up to professional staff about how she is feeling.  That would be a preferable option to plying her with medication that would close down the areas of her brain that are already under attack from dementia.

Sunday 7 am continuation of this post:

I’m glad Match of the Day is repeated in half an hour’s time.  I nodded off early in the programme last night and I need Gary this morning.  The advice of ‘letting sleeping dogs lie’ has really hit home this morning. For the last hour or so Maureen has been trying to make sense of her memory loss.  It started with thinking of writing to her mum and it has ended with what have I been doing for the last 16 years.  The questions are coming thick and fast with all sorts of barbs thrown in and I have had to be at my best to keep my cool.

Maureen understands my addiction to football and may accept that I’m going downstairs to watch Premier League which is a relief after listening to the Sky Blues struggle yet again yesterday.  Gary will also give me a break from the repeated enquiries that lead nowhere as Maureen just can’t remember and is bemused.

I’m hoping that additional support from the Home Treatment Team will help us through the next stage of our journey. We have now hit a very rough passage as we try to figure out a way forward.

Dementia: New Problems With Using The Kettle

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I have had to keep my eye on Maureen’s use of the electric kettle for some time.  She often fills it and up leaves the lid open when she switches it on. This morning I smelled burning plastic when she put the kettle on a hot ring of the electric cooker. I managed to rescue the kettle just in time with only superficial damage to the plastic casing .  Maureen didn’t see anything wrong in what she had done, clearly remembering how she used to boil water in times gone by.

The need for vigilance is paramount if a serious incident is to be avoided in the future.  Leaving Maureen alone in the house is now very risky and has to be called into question.  Unfortunately, our Care Agency are struggling to put additional sits in place as they are short of staff.  This means that I’m going to be confined to quarters for four days a week for the forseeable future.  In the mean time I will need to keep my wits about me at all times to minimise the chances of a serious accident.  I think it is time to call in Occupational Therapy to see if we can make the house safer for someone who is forgetting the safest way to use various things in the house.  The Fire Brigade are already wanting to pay us a visit to minimise the risks of accidents in the home.

Dementia: The Bed’s Too Big Without You

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I think it safe to say I’ve put up a pretty good performance in bed the last couple of nights.  Just past my 70th birthday I’ve been rather pleased with how things have gone.  I seem to have worked out how to get things off to a good start: the first moves are important as we all know and I seem to have grasped the sort of thing that needs to follow.

Having spent several days establishing a place where men are not allowed, I now seemed to have found a route into Maureen’s bedroom.  Last night followed the ritual of the previous night: no questions asked I just carried on as we have done for years.   Once in bed I kept my distance and went with our normal ritual of ‘night, night sleep tight’.  If my memory serves me right I think I managed to get a perfunctory peck on the lips -have to take things steady at my age.  We were both extremely tired and dropped off as soon as our heads touched the pillow.  In the early hours of the morning I knew I was in the right place.

Maureen was out of bed looking out of the window, she said something along the lines of she didn’t know where she was and needed to know she was in her bedroom with Paul. Then it was: ‘tell me that’s where I am and I will be ok’. How fortunate that I was lying in bed and able to make the right noises to help minimise her confusion.  You can guess where I’ll be aiming to sleep from now on but like all of these occasions it will be  a question of ‘don’t call me, I’ll call you’.  Now where have I heard that before?

Postscript:  As I post this Maureen has gone off on walkabouts without telling me.  She nipped out when I thought she was in the back garden.  It’s time to put my ‘money where my mouth is’ and leave her to roam alone for a while.  If I go and find her straight away it will only confirm she is not safe to be out on her own and always needs a chaperone.  My plan is to bump into if her is she is not back within the hour.

Great news she’s just come back after walking around the block.  Who cares she’s in her slippers because there’s a smile on he face as she says she’s ‘not walking enough’.  I knew locking her in wasn’t the way forward!