Category Archives: General

Dementia: RIP Fellow Traveller

General

It’s 3.30 am in the morning and I am adding to a post I drafted last night: 

I received some sad news yesterday afternoon that Maureen’s Uncle Dennis had passed away.  His death was not unexpected as he was in his 90’s, and had a number of health related complications, including Alzheimer’s.  Clarice his wife said: ‘I wouldn’t tell Maureen if I were you’.  Her comments suddenly struck a chord with me, and helped me to see: the only way you can possibly understand dementia is to live alongside it.

Dennis was no ordinary uncle to Maureen: he was special.  When first married Maureen, and her husband, rented a room in her aunty and uncle’s house.  They named their daughter Denise after him.  In those days when Dennis came home from work the first thing he did was to take Denise from her cot to nurse her in the lounge. Even in the latter stages of his life Dennis loved to see Maureen, and always demanded an affectionate kiss.

Maureen hasn’t even grasped that Dennis had been in a Care Home for the last few months.  We visited him once, and Maureen was terrified that she was going to be left at his new abode.  When we have visited Clarice in the last few weeks Maureen hasn’t been sure where Dennis was.  It may well be a question of out of sight out of mind. 

Clarice understands the need not to give Maureen any bad news: all it does is cause upset. This may well be difficult to grasp for those who have only ever viewed this journey from the safety of their own homes.

Supplementary passages:

At 8pm last night Maureen said she was worn out, and went to bed.  I decided to watch some T V, and turned in around 10 pm.  I saw that she was sleeping peacefully and took to the spare room to avoid disturbing her peace.  When she got up at 3 am this morning I promptly told her where I was, and got an unfavourable reply.  She has consequently removed some items of bedding from ‘her bedroom’ because ‘they smell’ and shut the door.  I will not risk going back to bed until the coast is clear.

Clarice is unlikely to ever read this blog but there are some things I need to say to her. I  want to thank her for the support she has always offered us on our journey with dementia.  Even when she been at the point of exhaustion, many times in the last few years, her support to us has been immense.

Clarice’s willingness to share her long journey has been so helpful to me as a Care Partner.  To have an artisan around the corner has helped me to cope with the challenges here on many a day.   It takes someone who has travelled this path to understand dementia: you don’t quite ‘get it’ from dabbling, books or courses.

I hope I am able to squeeze a few moments with Clarice in the next few days: to show my gratitude, and pay my respects to a very generous woman.  Her prayers for the last few months have now been answered:  Dennis is at peace, and free from his nightmare of dementia.

Oh dear it’s going to be one of those days.  I’ve just tried to put the record straight about last night, to be greeted with: ‘You don’t usually sleep with me do you?  I thought you’d gone to town’.

Dementia: Forgotten How To Fill Time

General

We had a relatively peaceful day yesterday.  I pottered in the garden for most of the day, while Maureen busied herself in the house.  Our afternoon siesta went well with us both having some shut eye.  As we began to prepare our evening meal I decided to pop some vinyl on the record deck.

Rod Stewart was belting out some of the old favourites as we ate our food.  After our meal I introduced the Everly Brothers, followed by Anne Murray.  As you will see from today’s Good Music page Anne Murray made the charts  because Maureen sang along so beautifully to: ‘For No Reason At All’.  I closed down our music session at 8 pm, so that I could watch some television.

Maureen didn’t want to watch T V, and filled her time in a number of ways.  I popped out of the lounge when the adverts were on, and noticed that she had been involved in some light ‘packing to go home’.  Then she decided that it was time to add to the underwear to what she had been wearing all day.  I found the missing bra, and she went away to try it on.  She then spent about an hour trying on various permutations of shoes.

Maureen clearly can’t remember what to do when she has time on her hands.  That is often when ‘packing to go home’ takes place.  When that has been completed, or abandoned, clothes become the issue; particularly missing garments.  The other time filler is the incessant search for missing items: it’s a wonder that the hunt for spectacles didn’t feature last night! 

I clearly need to give Maureen more support on how to fill her time.  It is unrealistic that she will want to join me in my endeavours all of the time.  It might be a tad ambitious to try to direct her into her some of her old hobbies, and interests.  My holding position has to be as resident D J, running a slightly longer session tonight.  I might even chance my arm and take her in hold when the slower numbers are on the deck!

Dementia: On The Right Road With Dementia UK

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I have copied part of an EMail, I received yesterday afternoon to show that my on-line support system is now operational:

‘Hi Paul,

I have read your blog from today, and you are managing Maureen’s change of emotion wonderfully, however I bet this is very tiring for you. It’s great to see that you have managed to find time to attend your appointments, and were able to take the car. Due to the change in emotion I was wondering if it would be beneficial to leave Maureen a note while you are out in car explaining were it has gone, I am sure you have thought of this before though.

As always you know where I am if you want to talk.

Take care

Melanie Sisson

Admiral Nurse’

The photo below shows that Mel and I are on the same page:

Just to be on the safe side I had left the whiteboard above in the kitchen, and another one in the lounge.  It worked this time but with dementia you can never count your chickens!

The other positive about yesterday was that we adopted another daughter.  Sue turned up as a replacement for Gail, our regular Wednesday carer.  With a quick briefing from me she slipped into her role as the ‘cleaning lady’.  I pottered in the garden and we played happy families all morning.

After she had gone Maureen was exhausted from all the ‘chin-wagging’ that had gone on.  During one of our tea breaks we chatted about holidays, and we happened to mention our Baltic Cruise seven years ago.  Sue has the cruising bug so we sought out our DVD to share our wonderful ten days on board the Jewel of the Seas

I am hoping that our new approach to the ‘carers’ invasion’ will stick.  Having adopted daughters visit three times a week can be a pain when all you want is a bit of peace and quiet.  On the other hand if you rarely get visitors your house doesn’t feel like a home.  All we need to do is keep thinking of how the ‘offspring’ can help when they arrive, so that we are not taken unawares.  The shopping list is already underway for Chloe on Friday, and I am hoping that this dry spell continues so she can help with the ironing.

 

Dementia: Riding The Roller Coaster of Emotion

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It something of a roller coaster of emotions here at the moment with Maureen having periods of: fears, tears, and anger.  On Sunday she was beset with fears she was going to be institutionalised.  Yesterday morning she was crying that she hasn’t any friends. In the afternoon she was extremely angry that someone had stolen her car.  A couple of hours later, the tears of frustration followed as she couldn’t find any underwear

I tried to alleviate her fears on Sunday by explaining that despite her concerns no-one could separate us.  I assured her that if we reached the stage when we were unable to look after each other, there were ways of sticking together.  We had previously explored the idea of Sheltered Housing, and I mentioned that might be a positive way forward in our latter years.  I also mentioned the possibility of buying in substantial nursing help in our own home.  Both of these alternatives came to mind after my visit to Coventry last week.

There is no immediate remedy to the lack of friends’ issue.  Unfortunately, the ideas of my time-travelling wife cannot come to fruition.  She hopes that when our children start playing outside in the warmer weather we will get to know their parents. Unfortunately, her remedy, as a young mother over 50 years ago, is not an option that is open to us.

None of her anxieties are surprising with dementia the elephant in the room.  We both have the ‘Winter Blues’ in this cold snap.  Once spring is in the air I am hoping that strolling on the Prom will solve some of our problems.  It’s surprising how a bit of sunshine might just help us to look on the bright side of life again.  However, I have no doubt the fears and tears will never be far away: dementia takes no prisoners.

The anger surfaced again at about 4pm yesterday afternoon.  Maureen woke from her siesta, and wandered next door.  She knocked at the door and spoke to Jack their youngest son explaining that someone had stolen her car.  I then followed her around the streets for about an hour.

In Maureen’s world Paul next door had taken her car without permission.  I had also conspired in the theft as ‘thieves, and vagabonds, stick together’.  I was told in no uncertain terms what a  s*** I was for my part in such a felony.  On the attack went as I followed Maureen around the streets; searching for a policeman to report the matter to.  It was one of the most unpleasant hour’s I have ever spent with Maureen.  Whoever she thought I was, it wasn’t an ally, and she wasted no opportunity to put me in my place.

It seemed likely that Maureen was recalling my trip to the shops earlier yesterday morning.  At the moment my thoughts about leaving the car on the drive seem the only solution to addressing the paranoia about her vehicle.  It’s Shank’s Pony, and public transport, for me for a while!

‘The little s*** who conspires with thieves, and vagabonds’, came to Maureen’s rescue shortly after tea when he retrieved missing underwear.  She had returned from the bathroom in tears, as she couldn’t find her bra, and pants.  A quick trip upstairs and I was suddenly transformed into a hero as I returned with the missing items.

Alas my new found status was short-lived.  None of the undies were comfortable, and Maureen was soon in floods of tears.  My advice of returning to ‘Women’s Lib’, and staying with the ‘Commandos’ was taken.  Then we’re off on the roller coaster again. It’s a funny old life being a Care Partner when dementia calls the shots: you never know what you are going to be cast as at any time of the day or night.  I wonder if it’s a coincidence that I’m having needles stuck in me later, by that kind lady at the Pain Management Clinic.

I’ve just mentioned to Maureen that I have to go for a blood test, and acupuncture this morning. Then I casually asked if I could use the car.  She said:’of course you can: it’s when I don’t know whose taken it that there’s a problem’.  How easy it is to get lost in the woods when you are a Care Partner, and dementia has got you on the run!

Dementia:’I Don’t Believe It’- I’ve Done It Again

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 Maureen and I are avid fans of Victor Meldrew and often watch repeats on YouTube.  His favourite phrase of: ‘I don’t believe’ it has to be
said about my behaviour early yesterday morning.  As I sat at the keyboard Maureen joined me in the office, and said she could hear  people talking about her, and wondering what she would do.  I immediately tried to put her mind at rest, and foolishly told her there was
no-one else here.  I even suggested she must been dreaming.  What is difficult to believe is only minutes before I have been tweeting 5 things not to say when someone has dementia, by Maria Marley.  As you will see I had immediately committed a cardinal sin on the first one:

‘1. Don’t Tell Them They’re Wrong About Something: To let the person save face it’s best not to contradict or correct them if they say something wrong. There’s no good reason to do that. If they’re alert enough, they’ll realize they made a mistake and feel bad about it. Even if they don’t understand their error, correcting them may embarrass or be otherwise unpleasant for them’.

My gaff was not the best start to the day: particularly when the Carer’s Invasion was hours away.  Maureen made a pre-emptive strike as soon as Chloe walked through the door, and retreated to her bedroom.  After a short while she returned to the fray, and challenged the fragrance strategy of Chloe’s attack.  The aroma was having an immediate impact on Maureen’s lips and nasal passages.  The impressive thing about Maureen’s response was her challenge to Chloe breaching the Carers Convention: no perfume in this neck of the woods.

In her defence Chloe mentioned that she had needed to use air freshener at her previous call. Her client had got in a mess, and there was a need to improve things somewhat. A truce was declared Chloe was despatched on a shopping mission, to allow clear the air measures to take place.  All was well on Chloe’s return after wide opening of windows, and doors.

Once again Maureen’s approach to a difficult situation has been exemplary.  Her intolerance to aromas makes her unwell.  However, rather than stay upstairs she dealt with the situation admirably.  Once again showing that when she is on form heaven help those who try to invade her home.  One thing we are clear about on the fragrance front: Prescribed Disengagement stinks and has no place in our home.  Long live neuroplasticity and all who sail under its banner.

 

Dementia: Found Out

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It has taken me a while to figure out what all this fuss is about with Maureen and the car. Then this morning it came to me like a bolt of lightning.  When we worked together I would sometimes ask Maureen if I could borrow her car.  Her colleagues in the office used to taunt her, and call me a cheeky monkey (or worse).  They suggested she was mad for her kindness.  After all I had a car of my own or my ex-wife did.

When the car issue surfaced again today there were threats of calling the police, if someone stole her car again.  I was also asked if I had a car.  Then there were accusations that I was supplying her with cheap tea in the morning.  When I mentioned that her eldest son had bought her some Chistmas Tea, further ‘outing’ took place.

Maureen’s response to talk of her eldest son led her to say: ‘I’m thinking of sending him a post card, to ask him to forward a photograph, because I’ve forgotten what he looks like’.  This is in sharp contrast to comments about her other son who phones regularly: he may be the beneficiary of her car.  She mistakenly believes the poor man hasn’t a vehicle of his own, and could have hers until she is able to drive again.

What all of this confirms is that Maureen’s emotional memory is still intact.  Sometimes, she is time- travelling, and mixes up people.  However, she is generally clear who contacts her, and knows that phone calls are few, and far between, from some folk. Unfortunately, at the very time she needs even more contact with family, and friends, the phone line is quieter than ever.  Apparently, this is a familiar tale when dementia is an unwelcome visitor to the cosy set up of most families.

 

Dementia: Looking Back (Week 3)

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When I decided to dedicate Monday’s post as a retrospective reflection on the previous week I had no idea if It would be something I would persevere with.  However, the Red Admiral is ‘not for turning’, for very good reason:  looking back works for me.  Firstly, it gives professional staff an opportunity to comment on my approach to being a Care Partner.  Secondly it gives me a moment to take a breath and think of a ‘shopping-list’ for the coming days

Mel, my Admiral Nurse, always finds time to comment, and make helpful suggestions.  I think this is more cost effective on our time, and means I get regular feedback on how I’m doing as a Care Partner.  She always closes her E mails with: ‘you know where I am if you need to talk’.  Her support is supplemented by Sue, our social worker, whose opening gambit is always: ‘how can we support you’.  She reflects Christine’s the Head of Casework’s message that: ‘we aim to look after carers’.

My day trip to Coventry on Wednesday may well have created the melting-pot for much of the dialogue between Maureen and myself in the last few days.  The shopping-list for the next few days has to reflect Maureen’s point about the Carers Invasion.  It would be foolhardy, in my opinion, to show them the door.  What we need to do is ‘knock them into shape’: the same as we all do with our offspring.  I want to make it perfectly clear here that none of this is a criticism of our adopted daughters: it’s a reflection on ‘poor parenting’.

Maureen and I need to get our act together and help our ‘children’ (carers) to grow.  It’s up to us to provide nurture to ensure that we are pleased to see the kids, and not wish they wouldn’t pop in so often.  Anyone know of any good Parent Craft Classes?

 

Dementia: Another Reality Check

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I’m often spoiled for choice on the topic of my daily blog:  today is no different.  I remember some kind soul on Talking Point suggesting I was: ‘like a butterfly on steroids’. I suppose that is one descriptor of my approach to being a Care Partner, along with others.  One thing I would suggest is that I’m not a Cabbage White, more of a Red Admiral.  There is no way I want to stick to the ‘prescribed diet’ for dementia: the shortcomings of which have been powerfully outlined by Kate Swaffer.

What I want to address this morning is Maureen’s point about the ‘Carers Invasion’. Her reality is that their presence is counterproductive to our independence. I need to measure that against another aspect of her reality, with a few extracts of some of her comments yesterday.  I’m using italics rather than quotation marks, as I’m aiming to capture the sentiments of her comments:

Clarice obviously doesn’t want the things in the bookcase: she’s left then here for me to take home.

I don’t want to speak to Clarice, she doesn’t come to see me.

I don’t like it here.  I want to go home but I don’t know where it is.

I need to contact my parents – they don’t know where I am.

None of my family phone me: they don’t know the number.

Why do I need to help with preparing food or cooking?

I don’t need other people to remind me when I need a shower.

It’s too cold to go out, my foot feels funny.

I’m not using that toilet: it’s one that men in here use!

Where is my bed, and where do you sleep?

I’ve had nothing to eat today: I’m going to get my son to take this up with the NHS.

You’re making too much noise; you’ll wake the others up.

Where are the children?

As I said in my post yesterday Maureen remains a highly intelligent woman.  However, when she is ‘acting out of character’ it is not always simple to comprehend her reality.  

My immediate response to dealing with the ‘Carers Invasion’ is to return to an earlier approach to repelling the attack.  What is wrong with accepting a bit of help with household chores, and shopping, at our age?  After all in a month’s time I will no longer be able to say I’m partly 70: I will be joining Maureen in being partly 80!  

We could also see the ‘ladies’ as welcome visitors, as all immediate family live over a hundred miles away.  Therefore, we can often go for weeks without anyone else in our house or days before a phone call from a family member.  So in short we recast ‘the ladies’ as adopted daughters who pop in regularly to see how the old folks are going on.  It’s up to us to knock them into shape!

Dementia: ‘Intellect Intacto!’

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Maureen and I often discuss the absence of good commedians on the television.  On occasions we use YouTube to remind us of the laughs the likes of Les Dawson ( pictured above) can still give us.  Those scenes in the laundrette discussing whether certain parts of the body are still intact came to mind yesterday.  Following my examination yesterday morning I can say without fear of refute: Maureen’s intellect is still firmly intact.

The Tea Boy (me) provided the goods on request, at the desired hour, yesterday morning.  Once the vocal chords had been lubricated Maureen set off on a familiar tack about the ‘carers invasion’.   Her logic, and rational thought, could not be faulted.  She put forward a cohesive argument for putting an end to ‘carers disabling the elderly’.  The case against invasion of privacy, and taking over lives; rather than enabling people, was clearly put.

Having listened to such an articulate presentation one thing is clear: Maureen is without doubt ‘Intellect Intacto’.  However, I need time to think about what we should do next!

 

Dementia: ‘I Want To Hold Your Hand’

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On Wednesday I held the hand the hand of two people who have been very important in my life: my mum and my brother.  Mum is now in a Care Home with a diagnosis of vascular dementia.  My Brother John is in a Nursing Home with a diagnosis Alzheimer’s. Today’s post shares glimpses of Wednesday’s visit to Coventry .  The picture below was taken three years ago, when I took mum to see John in his Nursing Home.  Even at that stage of his condition he was unsure it was his mother sitting next to him.

When my daughter and I arrived at my brother’s Nursing Home he sat in the lounge, adjacent to a couple of his fellow residents.  Nan who normally walks the corridors, holding my hand, was fast asleep in her chair on his left.  A gentleman to his right lay on a trolley continually moving his legs.  Other fellow residents were on manouevers: wandering around the lounge.  Carers were strategically placed monitoring proceedings: ready to intervene if things got out of hand.

John looked clean and tidy but a shadow of the handsome man in the picure above.  It doesn’t help that his false teeth have gone missing so many times that he no longer has them in his mouth.  I encouraged Lisa to sit with him for a while, as he has always been extremely fond of his niece.  I watched from a distance as his face lit up with an attractive woman sitting holding his hand.  At my suggestion Lisa put some rock and roll music on her phone.  I’m sure he tapped his feet, and was back to jiving at the Locarno with us all trying to catch a glimpse of him on Saturday lunch-time television.

I took over from Lisa after a short while.  John looked troubled as his eyes scanned the lounge watching the antics of his fellow residents.  Very occasionally he smiled, and tried to mouth a few words.  I held his hand and tried to say something that might have meaning.

Lisa and I stayed with John for about 20 minutes.  We caught up on his welfare by chatting to staff: he had fallen twice in the last few days but paramedics had established that the consequences were not serious.  Lisa was crying as we made our way back to her car, I bit my tongue to keep control of my emotions.  We both needed a short walk before our onward journey to see mum.

We decided that it would be better for me to visit mum by myself.  Lisa had visited a few days earlier, and mum wasn’t really sure who she was.  I think mum recognised me as soon as she caught sight of my face.  I took the precaution of saying who I was, after she had been walked gingerly into the visitors lounge on the arm of a carer.  Her opening question, as always, was: ‘Have you come to take me out in the car?’.  This question was repeated several times during my visit, despite my explanation that I had travelled down by coach.

Mums hair had been washed and set earlier in the day.  When I looked at her I thought I hope I look that attractive if I make 94.  You can see what a stunner she was as a young mum in the picture opposite; with John at her side, and me on her lap.

I joked that she must have known I was coming, and had a hair do especially for me.  Mum responded with her question about going out.

It wasn’t easy to find much to say, and to my disgust we couldn’t repeat our singing session of the last time we were together: no signal to my phone!  However at one stage mum burst into song with: ‘Don’t Sit Under the Apple Tree’ .  I don’t know why but I responded with: ‘What Shall We Do With the Drunken Sailor?’

I stayed with mum for 40 minutes or so.  My hands were obviously warmer than on my last visit as mum didn’t recoil when I reached out to hold hers.  Without music we both found it a struggle to find anything to say, and mum closed her eyes on several occasions; dropping off for several minutes at a time.  As the time to catch my bus arrived it was quite a struggle to ease mum out of the chair, and help her to shuffle back to her place in the Resident’s Lounge.

Mum’s home seemed very quiet on the day of my visit.  Carers were busy attending to the personal needs of residents.  Some familar faces were not around.  Joyce who normally has much to say sat quietly in her chair.  Mrs A, now over a hundred, normally has a flirtatious word  was not in her seat.

My travel home was arduous, with delays leading to the journey taking much longer than it ever had before.  It made me think of taking the car next time and being able to say : ‘yes mum I’m going to take you out today’.

When I arrived home at 9.30 I met one of the carers who had been holding Maureen’s hand in my absence.  We caught up on the day, and Maureen mentioned that she had been entertaining her companions with circuit training in the garden.  As you will see from the photo this cold snap has not prevented her from taking the advice to keep walking very seriously: she’s out there in all weathers!

When the carer had gone Maureen seemed genuinely pleased to see me.   I wondered where the angry woman who had berated me when I phoned her from Leicester on my outward journey had gone.  She had clearly forgotten telling me to come home, rather than continue with my trip to Coventry

There are three lessons from my trip to Coventry.  Firstly, when  I go to see John again take him some chocolate as that always puts a smile on his face. Secondly, try to make sure that I have music to hand on my next visit to see mum: it fills the long silences when we both have nothing to say.  Finally, never again phone Maureen when I’m away for the day again: it only adds to her confusion, and causes distress.

There’s only one way to close this post.  All together now: