Category Archives: General

Dementia: DNA In Early Morning Action

General

Image result for Pretending You Are Deaf Picture

I had to apply DNA in large amounts at 2 am this morning when Mrs Dementia was in full flow: if I had absorbed Maureen’s vitriol I would never have got back to sleep.  My dear wife was letting me have it with both barrels as she believed she had washed and dried my clothes but couldn’t find any of her own.  It was one of those occasions when there was no point in challenging her reality: she can’t even remember how to use the washing machine.  After taking a verbal bashing for a while I made her a cup of tea and left her to it.  She clearly got bored with talking to an empty room as on my return I found her curled up in an armchair at the end of my bed.

I have changed the scenery in the lounge this morning and taken down her birthday cards as they have now been up for over a month.  They are adding to her confusion as she looks at them every day and tries to work out who her in laws are. I would doubt that she will notice anything different. However, she was pleased with a change of scenery yesterday when I put a red begonia in a pot that used to belong to her grandmother in a prime position in the lounge.

Maureen swollen stomach continues to concern me and is obviously a source of discomfort.  It is one of the causes of the clothing crisis as it is difficult for any clothing to fit in that area.  I’m going to try one or two dietary changes after advice from our Pharmacist yesterday: Yvonna thinks it is possible that my menus may be behind Maureen’s bloating  

I sent Elaine, yesterday’s carer on a shopping mission and she returned with some joggers that seem an excellent choice.  Unfortunately, Maureen has stashed them away somewhere and it may take them a while for them to surface.  I thought I knew where she hides things but my detective skill obviously need honing as she suddenly started wearing her distance glasses the other day and they have been missing for months. 

The weather forecast is typical for Bank Holidays with lots of rain expected.  I hope they are wrong and I can tempt Maureen to take some fresh air today.  Yesterday was a wash- out following clothing difficulties and little enthusiasm to do anything other than sleep.

Dementia: The Importance Of DNA

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Image result for Do Not Absorb Picture

Early on in our journey Yvonna our local Lloyd’s Pharmacist alerted me to the importance of DNA once your loved one has a diagnosis of dementia.  Her message of Do Not Absorb became particularly pertinent yesterday.

I returned home from my meeting with the CCG yesterday to a litany of complaints about Hilary the Carer who had been with Maureen during my absence.  Maureen thought she was a spy trying to find out about us with her endless questions.  I went along with Maureen’s reality and agreed that we didn’t need any more nosey people in our lives.

Following a siesta in the afternoon Maureen thought I was her brother: she asked me lots of questions about my wife and daughters.  Once again I didn’t challenge her reality and blagged my way through a challenging hour or so.  I changed things by going out to the shops and when I returned I was back as Maureen’s husband: her brother never surfaced with that shopping.

The interesting thing about the evening was we spent a second night together in the marital bed: sleeping of course.  For the second night running we went upstairs together and slept in our front bedroom as if that was what we always did.

I’ve just remembered I need to pop into our local pharmacy with some fruit this morning, as I caught one of them buying a stash of biscuits the other day.  Someone needs to remind them about healthy eating: they can’t always expect ice cream as a sincere token of our thanks for such excellent support.

Dementia: NELC Welcomes Feedback

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Image result for NELC LogoI have always found the Local Authority here accessible: they welcome feedback.  Any time I have requested to meet Senior Officers of NELC they have found time within their busy schedules to hear me out.  My faltering presentations, where I have often outlined shortcomings in our experiences of their services, have always been received professionally and prompt action has always been taken to improve matters.  I have every confidence that yesterday’s meeting will lead to further improvements in the provision of services for families where dementia is a factor.

Yesterday I outlined the buck passing that had gone on about Maureen’s dreadful experiences in Ladysmith Road Care Home.  The points I have made will be addressed by the appropriate Officer and I am confident that a review will take place of the future use of this facility.  Although I’m well aware that Austerity Measures have led to the closure of provision that may well have been more appropriate to Maureen’s needs.  As always when I have raised matters communication will continue and I will be kept informed of the outcome of my concerns.

Lisa Hilder, the Assistant Director for Strategic Planning, thoughtfully outlined some new and forthcoming provision that the CCG are supporting.  Their use of Drama to support Reminiscent Therapy seems interesting and details will be forwarded.  I was also delighted to hear that an initiative to address Sleeping Disorders is in the pipeline.  Sally an Engagement Officer who was also at the meeting pointed out that the CCG’s Portal could always be used to reflect our experiences of Services.

It is always a dilemma to know what to do when you are at the receiving end of  poor services.  The shop steward within me is always tempted to ‘take them on’; more recently I have tempered this combative nature of mine with complimenting when services are good.

My blog will continue to give an honest account of how things are for us.  My dear old dad used to advise his children to ‘tell the truth and shame the Devil’: he was still writing beautifully hand-written letters complaining about all sorts of things in his 90’s!

Dementia: Running Out of Gas

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Maureen and I were both running on empty yesterday afternoon as we tried to catch up on an unproductive morning.  None of our plans for the morning came to fruition as Maureen eventually gave up trying to find comfortable clothing and slept off her frustrations.

Playing catch up in the afternoon led to exhaustion and when we got home we both took to our downstairs beds for a couple of hours. Siestas seem to help us regain our energy but we are yet to experience a satisfactory outcome from any attempt to provide significant respite. 

I’m meeting Officers of the Clinical Commissioning Group this morning to raise concerns about Maureen’s experience in Ladysmith Road Care Home.  The CCG’s provision of  dementiaservices through NAViGO has recently received deserved national acclaim.  At today’s meeting I will register our thanks for the excellent support we have received from the local set up.  However, I also want to raise a number of points about how respite at Lady Smith Road had a negative outcome for both of us.

Hilary will be here this morning: she is a mature and very capable carer.  I’m hoping that she can make some sort of impact on the ongoing clothing crisis. 

Dementia: Togetherness

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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

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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!