Dementia: Togetherness

General,

Maureen is very fond of the above number by Emmylou Harris.  It is one of the many songs she has learned in the last few months as we have used YouTube to liven up our days.  The song may well be a subtle reminder to us both of something we need to focus on as we travel on this unforgiving journey.

We have decided to cancel the Carer Sit today and have a day to ourselves.  Although we are very grateful for the support we receive from carers we want to retain the independence that we have always thrived on.  I also need to avoid seeing Carer Sits as an opportunity to run off and do my own thing.

There are a couple of attractive possibilities this morning to revive our togetherness.  If the tide is in – always a problem when you live on an estuary – we could have a lovely walk on the beach. The wet weather alternative, which now seems more likely,  is a trip into Grimsby as we always enjoy wandering around the Indoor Market and buying good quality fruit and vegetables.

I have an appointment at 2.30 pm with a Consultant about the tear in my rotator cuff.  I’m sure Mr Bain will be pleased that Oliver, his  physio, has helped me to manage the condition and surgery will not be needed.  Maureen may prefer to stay at home while I’m away for an hour or so.  She did the same yesterday preferring to sort out the washing while I went to have my hair cut.  I’m also managing short evening walks around the block (now up to 5 circuits) while she rest on the sofa.

When I met Gary our social worker yesterday we returned to the delicate balancing act of preserving Maureen’s independence and ensuring her safety.  We both recognise that managing risk confronts all Care Partners day after day, and all they can ever do is exercise judgement at any particular moment in time.

The Carer Support Plan is now signed and sealed with 3 hour sits during the week and 2 hour at the weekend.  Gary and I both see the Plan as a dynamic document that will facilitate support rather than something that is set in stone.  It is surprising how quickly Gary has been able to bring this matter to a positive conclusion: perhaps social workers have taken a time to familiarise themselves with the Care Act. Gary seems to be taking a different position on my monthly Personal Allowance; his predecessor said that was an entitlement he is of the opinion it is a discretionary amount but I get the impression that the agreed purchase of a mobile phone will be honoured.

 

Dementia: Have You Ever Asked ?

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Have you ever actually ASKED a person with Dementia ??

  • Published on August 23, 2016 in Linkedin

Co Founder of at Purple Angel dementia awareness Campaign

QUESTION ?  Have you ever sat down and ASKED someone with Dementia what it FEELS LIKE ?
Have you actually ASKED  them about THEIR thoughts on it, what its like to live with this awful illness and the HORRORS that come, or may come their way? AND,  more importantly their HOPES and DREAMS for the future?  Because they do have them!!
When you, or someone you know,  knows someone whom has just been diagnosed with dementia, who better to ask, than someone who has been through the mill, the upsets, the shock and the wall of bureaucracy “What do i do now  ” ??????
Hello, my name is Norrms Mc Namara and eight years ago, aged just 50, i was diagnosed with dementia, the Alzheimer’s type, and then four years ago i was told they had got it WRONG !! Only to be told i STILL HAD dementia, but the lewy bodys type, not Alzheimer’s.

I wrote this book to explain that their can be LIFE after diagnosis, to tell people that you dont suddenly wake up in a morning and turn to your loved one and say ” WHO ARE YOU “

It doesn’t happen like that, its about recognizing the “Critical chain of events that lead up to symptoms becoming noticeably worse and acting on them by getting the right help and medication in the early days, not a cure, but some medication does help.

I am just a family man who wants to help others and show that LIFE can go on after their diagnosis and have had some wonderful reviews about the book.

I hope it helps you

Norrms Mc Namara

New Book on Dementia
THE LEWY BODY SOLDIER Written from the heart by someone LIVING WITH DEMENTIA,
https://www.amazon.co.uk/Lewy-Body-Soldier/dp/1536805874/ref=sr_1_13?s=books&ie=UTF8&qid=1469952233&sr=1-13&keywords=Norman+Mc+Namara
Also available worldwide on Kindle
Also please take a look at our website and see what we have achieved for those with dementia in just THREE YEARS
http://www.purpleangel-global.com/Attachments area

Dementia: Early Birds Enjoying A Good Catch

General

We have been up since 4 am this morning which is not surprising as both of us had an early night.  This followed a couple of siestas yesterday afternoon and evening.  It is clear that we are finding this recent warm spell exhausting.  We are left wondering how we used to cope with the heat of Corfu in our younger years.

Maureen has been in great form this morning: very eager to help tidying up around the house. She has worked well in the kitchen drying the pots and pans after I washed them.  We then made a very early morning call to Tesco where she has been a revelation.  I directed her like a traffic policemen as she skilfully handled the shopping trolley around the aisles.

Maureen is now enjoying an early morning rest after a busy start to the day.  There is little doubt that she enjoyed the togetherness we both felt as we went about our business this morning, like any other couple who share the domestic duties.

One of the things I need to take account of is how energy sapping our daily business can be for Maureen.  It is easier in some ways to take off and do things by myself: it is certainly quicker but it may also be reckless as use it or lose it comes into the reckoning.  We cannot afford to take such risks with Maureen’s functional ability or the quality of our relationship.  Indeed Maureen’s issue about married couples doing things together is paramount in all of this.

I am meeting Gary my social worker this morning I need to sign my Carers Assessment and chat about how things are going.  The way things are going reducing the amount of carer sits may well be a sensible way to go by programming an away day into our weekly schedule.  Maureen is keen to visit family in Coventry and I’m keeping the pot boiling on that front with daily anecdotes about Bambi.  It is one of those situations where timing is crucial: on a good day with a following wind we will just go with the flow.

 

Dementia: Siesta Saves The Day

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Maureen and I have just had a wonderful two hour sleep.  It is so hot in Cleethorpes today that we returned from our morning endeavours totally exhausted but relieved after a busy morning.

Dr Munjal does not think Maureen’s swollen tummy is anything sinister.  As always he was lovely with Maureen encouraging her from the chair to the examination table with great skill.  He has encouraged us to keep an eye on things and return if things don’t improve within two weeks.

Maureen did really well when we were on the Avenues.  She now has a birthday card for her brother and a smooth chin.  She couldn’t understand why the beautician knew her or had any idea that her dad had been with her in hospital following stroke.

It would be a bridge too far to take up Mark’s offer of an appointment to cut and colour Maureen’s hair.  Her hairdresser is someone else who understands dementia from the inside following a close family member having the condition.

Maureen has just saved the day by coming upstairs to tell me the oven is very hot: another few minutes and those potato wedges would have been ruined.  I’d better don my chef’s outfit and sort out a late lunch……

Dementia: He Wanted Bambi

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It is time to take the plunge for a while and see what progress I can make on the meaningful activities I listed yesterday.  I’m going for it in a big way this morning as I have already laid out a summer outfit for Maureen to wear today.  It is just possible that the prospect of seeing her G P will entice her to get out of her usual outfit but I wouldn’t put money on it.  In fact getting her to see her G P is far from ‘a banker’ but I can kid her that the main purpose of going to Clee Medical Centre is to get my ears syringed.

If we make it to Cleethorpes we will be spoiled for choice with lots of options for meaningful activities.  We both need a ‘hair do’: mine a simple trim; Maureen something more extensive.  Visits to the chiropodist and dentist are also outstanding.

With the prospect of going out this morning we have decided to cancel the carer sit.  This will address Maureen’s ongoing concern that we need to do more things as a couple rather than being saddled with strangers in our midst.

If going is good today I will return to yesterday’s theme of an imminent trip to Coventry.  Yesterday Maureen seemed keen on catching up with some grandchildren we haven’t seen for a while.   I’m hoping that reminding her of some of their special phrases as young children will do the trick: ‘don’t ike it want Bumbi’ the words of a certain young man (now aged 22) when he was frightened by E T and wanted to watch a Bambi video instead!

I hope that in the next few days I can steer away from repeating the familiar tales of the daily challenges of dealing with Maureen’s presentation and outline how meaningful activity is helping us to rediscover The Good Life.

Edit: Superb service as always from Clee Medical Centre we have an appointment at 11 am this morning.

Dementia: ‘Neighbourhood Watch’ Thwarted

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Maureen is filled with joy at the moment because she has just thwarted the unofficial ‘Neighbourhood Watch’. She scarpered after I made advances towards her probably because she may not have been sure who I was.  On the other hand I may be losing my charm!

Her delight is caused by avoiding Pat, a near neighbour, who took her by the arm and brought her back home a few weeks ago.  She keeps telling me that she ran past Pat’s house so that she could enjoy being out by herself without being hauled back here like a naughty child.

As soon as I realised what I had done I gave Maureen some space before searching for her in the car.  I returned home after a quarter of an hour to find the front door open and Maureen inside.  She had got into the house via the back door and opened the locked front door from the inside.

Two lessons from this episode: avoid make advances to Maureen if she could be unsure who I am, and never underestimate her capabilities.  As Susan Macaulay and others have reminded me dementia does not progress in a linear fashion.

Edit: Two hours later and I’m in trouble once again for calling Maureen ‘darling’ and she has made it clear she no such thing.  Even  I have to remember to be person-centred and always use her name.  I am maybe getting it because she is too hot and believes she hasn’t any cooler clothes.  Unfortunately, I am making no progress on solving the clothes crisis!

 

Dementia: Developing Meaningful Activities

General,

A recent article from the Dementia Services Development Centre caught my eye and made me think about how we spend our time.  I was particularly taken with its emphasis on meaningful activities for someone with dementia and have copied an extract below:

‘There has been a growing awareness in the UK of the important role of meaningful activity when supporting someone living with dementia, but the efforts to address the need for meaningful activity often slide into time filling activity rather than activity that helps the individual to connect to themselves, their connections and the larger world around them.

So how do we tell a meaningless activity from an activity that meets a need for someone? There are three basic questions to ask of a planned activity:

1. How does the process of the activity and being involved make the participant feel? Well-designed meaningful activities produce feelings of well-being, accomplishment, or connectedness.

2. How does the activity help the participant to stay connected with the person they have always been? Maintaining connections with past interests, networks and roles is especially important as someone living with more advanced dementia may struggle to maintain that sense of connection with their past that most of us take for granted.

3. How does the activity help the participant to feel like they have something to contribute? Not all activity has to be about contributing to the greater good, but feeling as though your efforts matter to someone else is what helps most of us get out of bed in the morning’.

The article has made me think about activities that have fallen by the wayside here and could be resurrected to good effect:

  • Solving crosswords together
  • Moving our dancing sessions from the kitchen to the lounge and further
  • Attending meditation classes together
  • Shopping expeditions to find Maureen  suitable clothing
  • Swimming at the local Leisure Centre
  • Returning to Short Mat Bowls
  • Travelling to meet family and friends together
  • Exploring opportunities for joint voluntary work
  • Discussing the possibilities of short breaks and Winter Holidays

 Drawing up lists is easy: making activities meaningful is the challenge!

Dementia: Saved By The Bell

General

I thought the creation of the lounge/bedroom had reduced the risk of Maureen going AWOL but I was wrong.  Fortunately the alarm on our front door and darkness at 3 am in the morning saved the situation the other day.  I had been fast asleep as Maureen walked by my bed; clearly unaware of my whereabouts as she opened the door to look for me.  I cannot risk being saved by the bell again and have taken to putting door keys in a safe place before retiring.

The beauty of the lounge/bedroom is that we sleep in the same room and consequently I’m getting more rest.  If Maureen awakes I have a chance of offering immediate reassurance and joining her as she returns quickly to the land of nod.   My sleep pattern is also helped by sunrise getting later by the day.

Maureen has been very tired today asleep on the sofa for much of the day.  So our plans to see the Massai Warriors tonight are in tatters

Today’s carer spotted something I have become concerned about recently: Maureen’s tummy looks very swollen. This will need to be looked into in the coming week and will add to her concerns that she is facing one health problem after another.  In her world she is continually hoping to be well enough to go ‘home’; away from a place that she has no affinity with whatsoever.  She is frequently thinking of writing to her mum to tell her she is on the mend and will be home again soon.  It is something she never quite gets round to and there is no point in me challenging her reality on this issue or any other.

I drafted the above last night while Maureen was sleeping and we have now been listening to YouTube since 4 am.  It has been a difficult night with Maureen waking asking where her mum and the others are on several occasions.  I told her that her mum wasn’t here and eventually that she had gone home: that settled her for a while.

The old favourites have lifted Maureen out of her despair.  She continues to be amazed that I am so in tune with the music she loved as a teenager and can’t quite grasp how I have managed to accrue such a selection of Golden Oldies.

This early morning awakening has had two productive outcomes.  Firstly, my perusal of the internet suggests that Maureen’s swollen tummy could well be a side effect of rivaroxaban: abdominal bloating has been reported by others.  Secondly, I have realised that it is the wrong time to attempt to introduce Maureen to Day Care.  As Gary my social worker has warned me; ‘we don’t want to be scuppered at the first attempt’.

Maureen is pleading on a daily basis ‘to be allowed to go home; away from this Care Home’.  To take her out of her own home and put her in a setting that could remind her of dreadful experiences in Ladysmith Road Care Home is far too risky.  What Maureen needs at the moment is lots of TLC from yours truly and further strategies to lift her spirits: how fortunate that after 25 years together I know how to ‘play it’.

 

Dementia: Enjoying A Natural Break

General

A second post already this morning as I dont want to risk becoming ‘lazy’ like  Kate Swaffer.

Maureen and I took a break last night by wandering around Cleethorpes alongside groups of holidaymakers.  We often feel we are on holiday all the time here being retired and living by the sea after years of city dwelling.  At 8.30 pm last night the local ‘hot spots’ were in full fling.

The Beachcomber Holiday Park, a small caravan site, with all the trimmings of such venues is a short walk from our house.  We declined joining in with the revellers at a Dolly Parton Tribute Show but cast a glimpse of the 100 or so folk enjoying Country Music.  Then we ventured across North Sea Lane to see what was going on at Pleasure Island.

At 9 pm the rides are closed and if you listen patiently you can hear the Sea Lions talking to each other.  The entertainment hub was in full swing with a magician entertaining (deafening) lots of small children with his antics.  A casual enquiry at the bar confirmed that the Massai Warriors will be on tomorrow evening.  If things go well we will return to see their acrobatics this evening.

On our homeward journey we watched young children running around a play area at  what would be our local if we chose to eat at the local Carvery.  We stood for some time watching them run in and out the swings and slides trying to catch the leader within a minute.

I’m not sure if we will ever make a Winter Holiday in the sun again but Lisa my eldest daughter kindly shared her holiday in Portugal with us last week.   She knows it is one of our favourite haunts and sent us lots of photos to bring back such happy memories of Christmas in the sun.  Three of them are featured below:

 

Living well…with dementia?

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I have changed the title of my Blog on the strength of this forthright post from George Rook. He always says it as it is and I’m very grateful for his hard work and honesty. Like us all Maureen and I are ‘Seeking The Good Life’.

georgerook51's avatargeorge rook

What did I learn yesterday?

I had a great day in London, working on the Alzheimer’s Society new vision with 50 like minded people.

I had eggs royale and coffee at St Katharine’s dock, in the sun, beside yachts, served by a lovely helpful young man.

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And, as ever, I learned lots, reflected, and altered my thinking.

That’s one of the great pleasures of going to conferences and workshops.

Ideas, challenge, discussion…

“Ideating”…a new word that was born in my world yesterday. (Though I hope it also dies soon.)

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Living well with dementia…what’s that all about?

I’ve wondered about this for some time, but I’ve stuck with it.

Living well with dementia is not the right description.

Yes, it is possible to live well, with or without dementia. To carry on living and doing the same things you did before. To go out and meet friends. To be active, walking…

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