Dementia: It’s Just Another Day

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Maureen and I have never regarded it as important to celebrate our birthdays with anything special.  We are much the same about Christmas.  I always say to her that her presence is my present.  We have often been away around Christmas and joked that: ‘I paid for your holiday and you paid for mine.’

For a few years we gave each other cards from a selection of those we had sent and received in previous years. However, yesterday was rather different from previous Wedding Anniversaries.

During the early part of the morning Maureen looked through her birthday cards.  Although the event was a couple of months ago she has only opened her cards recently.  Some of them are still on display in various parts of the house.

When Chloe, our carer arrived, Maureen didn’t mention that it was a special day for us.  In fact they spent a lot of time together, before breakfast, chatting  in the warmth of the garden. I may be wrong but I think that Chloe has an eye on some of the tomatoes that are ripening!

We  passed the day in our normal fashion with me preparing meals, and Maureen clearing up the clutter. In between we played some of our favourite music and had the odd waltz around the kitchen.  Actually it may have been a slow foxtrot; as taught by ‘Kevin from Grimsby’s’ dad.  I’m not sure Keith Clifton would have wanted to take any credit for our version and we would not have got a ‘Ten from Len’.  No matter we had a lovely day, despite Maureen being unaware of the significance of the day.

None of this is surprising with Maureen’s current presentation.  She has little concept of time or date.   Sometimes, her comments on the weather show she has no idea what season it is.  I try to ‘stick to the book’ on all of this: I only correct her if it is essential.  Putting her right about time is only really needed when I am trying to get her to bed down for the night, and she thinks it is morning.  Although she wears a watch it is too small to see, and clocks don’t seem to help at all.  I am beginning to wonder if she is still able to tell the time.

So yesterday was just another day, as far as Maureen was concerned.  The fact that it was our 17th Wedding Anniversary almost passed her by.  In fact, if I had reminded her how long we had been together she would have stared at me in disbelief.  She has little memory over many important events in her life, and that may well be a blessing in disguise.

Two musical themes on the day:

Another Day by Paul McCartney

Another Day In Paradise by Phil Collins

Dementia: The Importance of Staying Positive

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If I don’t live by the graphic on the right things are going to get really difficult here.  My appointment with the social worker, to review my Carers’ Assessment, has been postponed yet again.  Therefore, we remain saddled with a Care Package that is totally unrelated to Maureen’s presentation.

It is rather difficult to progress anything without the social worker’s blessing.  So all I can do at the moment is tread water and try to cope.

What I have to ensure is that my tiredness, and irritation, is not picked up by Maureen.  It is time to keep a smile on my face and tough it out over the weekend.  I will need to focus on working with staff at the new Care Agency on Monday when they take over the reigns.

We are fortunate that Maureen’s youngest son will be here on Sunday.  He has an incisive mind, and a balanced approach to things.  He couldn’t be coming at a better time.  We need wise counsel before we take our next next steps on our journey with dementia.

Dementia: Two Important Ladies

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Today is our 17th Wedding Anniversary – an important event in itself.  We don’t normally do anything exceptional to celebrate, so we willFeatured image probably have a quiet night in.  As the ‘in house chef’ it is my responsibility to create dishes suitable for the occasion.  It is also the day when I am meeting our social worker to progress my Carers Assessment.  That is where the other woman in the photograph: my mum comes in.  I need to go to visit her as soon as possible.

Mum is 94 now and lives in a Care Home in Coventry.  She is rather forgetful and has vascualr dementia.  If I don’t get to see her soon she may forget who I am.  It is likely that she will deny I have been to see her within half an hour of my departure.  However, just to be able to take her out for a short ride around local country lanes is all she asks. She remains so grateful for such small pleasures.  If she behaves, I might even take her to her favourite Country Park and treat her to an ice cream.

The meeting with the social worker is opportune after the events of this week.  It is now time to draw a line on Maureen wandering or being left to her own devices.  We have had more than our share of good fortrune on that front: chancing our luck any further is not an option. This raises the thorny issues of independence and deprivation of liberty.  These mattres have to be dealt with sensitively, as it is vital for us all to recognise the sterling efforts Maureen makes day after day in the face of adversity.

I chose well 17 years ago and it is until ‘death do us part’ as we continue on our journey with dementia.

Dementia: Sailing Lifts Mood

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Yesterday evening Maureen woke up from dozing, on the sofa, in a very distressed state.  Finding no-one else in sight she thought she was alone and didn’t know where she was.  I heard her crying; called her and she eventaully joined me sitting at my computer, in our box room.  There is nothing new in this event; since stroke, and the onset of dementia, it takes Maureen a while to come round in the ‘morning’.  Faced with her presentation I decided on a simple route to help her out of her distessed state: ‘Sailing’.

Once we went downstairs I immediately put ‘Rod the Mod’ on the Cd Player.  We have always been fans of the ‘Lad’ and Maureen often sings along to his music.  I think I also recalled that the next two tracks were: ‘I Don’t Want To Talk About It’ and ‘Have I Told You Lately That I Love You’.  I thought such meaningful music would help to ground my dear wife.  Then I thought of an addition to my ‘cunning plan’.

I knew that Maureen would probably venture outside.  One of the first things she does every ‘morning’ is to open the back door and walk around the garden.  True to form; she put on her shoes and ventured outside.  Just by chance I found her something useful to do – fill up the bird bath with water.  We then both made it a more pleasant experience for our feathered friends by removing some of the sludge, before Maureen topped up with clean water.

Music is a key tool for lifting mood in this ‘Care Home’.  It isn’t very often that it doesn’t do the trick.  Later in the evening with YouTube on the ‘girl’ was singing her heart out to Christie Hennessy.  So plain Sailing yesterday evening for us; then it got even better.

Marie our daughter in law received our phone call and confirmed that it is our Wedding Anniversary today!  I don’t know why but both of us always struggle to remember the exact date.  I think it is possible that it is because Maureen made me serve a seven year apprenticeship before she agreed to become my wife!

Three pieces of music to help lift your mood:

Sailing by Rod Stewart

Remember Me by Christie Hennessy

Wedding Day by the Bee Gees

I know this is an early morning post but it is our Wedding Anniversary you know!

Dementia: A Care Giver Knows

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I cannot think of any better words that sum up what it is like for me to be a Care Giver to my wife than the following:

A Caregiver Knows…

Did you ever wonder how much pain and grief your heart could take?

A caregiver knows.

Did ever wonder how strong you are, how many things you can do at once, or how many failed attempts you could endure?

A caregiver knows.

Did you ever wonder if frustration, anxiety, or sheer exhaustion could actually kill you?

All too often, caregivers know this too.

Have you ever cared for someone, who instead of getting slowly better, is slowly fading away, piece by piece… right before your very eyes?

Have you ever felt the despair and hopelessness of that?

Caregivers for dementia patients know this despair and live it every single day.

The remainder of this piece can be found at: A Care Giver Knows

Dementia: Playing Your Cards Right

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It must be a real dilemma for paid carers to know what to do with Maureen when housework is done. When  I returned home yesterday Rosie mentioned that she had been playing ‘Fish’ with Maureen.  I enquired about the card game and Rosie suggested that Maureen would explain all to me later. I thought no more about it until Maureen raised concern about the game, shortly after Rosie had gone.

Maureen had no idea what ‘Fish’ was all about, and said she found the whole game confusing.  She mentioned that eventually they had ended up playing Snap, which she clearly found infantile.  Unfortunately, it gets worse than that: Maureen thought the whole card playing was part of an assessment.

She felt that Rosie was trying to establish ‘if she was mad’ and needed to be taken away to a Mental Hospital.  These fears about assessment, and being ‘locked up’ are never far from the surface.  Maureen often fears that a conspiracy is taking place to put her away in some awful kind of residential establishment.  I specualte that this is the result of seeing her father locked in one of the old fashioned EMI Wards.

Helping Maureen find pleasurable activities is a challenge to us all.  It is likley that she has forgotten how she used to fill her time.  Sometimes she stays in bed when she has no clear plans for the day ahead.  Housework often leads to complaints about: ‘it being worse than having a job’.  I am not sure there is a simple solution to trying to direct Maureen into activities that she might enjoy.  It is something that I need to think about with some urgency.

One thing is clear she doesn’t like me going out and leaving her with carers.  Therefore, she will continue to complain about her pursuits when carers are here; because she resents being ‘baby sat while I go out and enjoy myself.’  I will have to live with her discontent if I am to have any respite from being a Care Partner.

Dementia: Clear and Present Danger

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Some additional measures are now needed to keep Maureen safe. In the last two days I have managed to track her down on walkabout being shepherded back home by two kindly folk.  On Tuesday she was walking arm in arm with an elderly man; Clear and Present Danger: Bragging Rightsoblivious to any concern about her lengthy absence.  Yesterday she was in the company of a middle-aged woman who  guiding her back home.  It is fortunate that she met such friendly dog walkers on her travels.

It appears that Maureen has increased the range of her walkabout.  She is now venturing as far as the Country Park before she seeks assistance to find her way home.  Her current walkabout are now a cause of real concern for your truly.  It is no longer simple to track her down, as she increases the range of her tours of the local area.  In the past I have given her a measure of freedom before tracking her down.  The time has now arrived to review my approach to her walkabout to ensure her personal safety.

Maureen is very vocal about her independence and has indicated that restriction will lead to dire consequences.  She feels she is safe to be both left to her own devices in the house, or on walkabout.  In fact, she has made it clear that if my concern about her independence continues she would elect to end our relationship.  I fully recognise that this is dementia robbing Maureen of any realisation of the risks involved.  Unfortunately, we are no longer in a position to hold rational conversations with my dear wife.

Preserving Maureen’s independence and safety are of paramount importance, as we continue our journey with dementia.  Such matters are of immediate importance and have to be resolved before we consider the small issue of my Carer’s Assessment.  It is fortunate I am meeting with our social worker on Friday morning.

Dementia: The Way Ahead

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The next few Featured imagedays are important in our journey with dementia.  The appointment with our social worker on Friday morning will be the start of my Carers’ Assessment.   I need to take advice on how to develop a life alongside being a Care Partner. There are lots of aspects our lives that have fallen by the wayside, as we have grappled with the consequences of Maureen’s stroke and onset of dementia.

The following list outlines my current aspirations:

  • Visit family and friends on a regular basis
  • Plan holidays
  • Resume meditation classes
  • Resume tai chi classes
  • Return to ballroom dancing classes
  • Return to some form of painting and drawing
  • Attend some form of educational/interest group/class
  • Read more books and other publications
  • Improve my DIY skills
  • Resume involvement in the Labour Party
  • Continue with my attempts to improve the diagnosis and treatment of dementia

I am sure I may well revise this list in the next couple of days.  One thing for sure Cleethorpes is a lovely place to live, as you can see from my photo above of the sun rising over the Humber.

Dementia: Whatever Next?

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Life is never straightforward when you are living with dementia.  Yesterday didn’t get off to a good start with news that Chloe brought with her when she turned up for the carer sit.  Her conditions are to become even worse when the new Agency takes over next week:  the hourly rate is going to be reduced and the slight enhancement for working weekends is going to be removed.  I listened intently to the news, and questioned if such changes were legal with the regulations around transfer of undertakings.

I have mentioned before that paid carers and Care Partners need to get organised.  A Trade Union for all those involved in the care industry is needed.  I can see no other way forward to end the blatant exploitation that is currently taking place.  We decided to keep the bad news from Maureen but it is posiible that she has ‘came out in sympathy’: taking to her bed following Chloe’s departure.

It looks like the clothing issue has resurfaced yet again.  Maureen spent a long time after Chloe had gone deciding that none of her clothes were suitable, and retreated to her bed exhausted.  Underwear that appeared to be suitable has now been declared too tight, and having no clothes has surfaced again as an issue.  She stayed in bed for the remainder of the day despite my gentle encouragement to get up.  That meant that her only meal of the day was breakfast and she did not taken her evening blood thinner.  I saw no point in doing battle over that – she is reluctant to take it at the best of times.

My optimism about solving the clothing issue has diminished.  Perhaps apparent progress being little more than a false dawn in the general discomfort that is a feature of Maureen’s presentation.

I had a relatively a positive phone converstaion with the new Care Agency yesterday afternoon. Time will tell if they match their compassionate rhetoric with practise.  It is not going to help that the hard working Chloe, and her colleagues, are going to have less in their wage packets.

Dementia: Time To Become A Whistleblower

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The time has arrived to become a whistleblower on the approach to dementia that we have experienced.  It is bad enough for diagnosis to be so long winded.  Then Maureen has been discharged from the Memory Service as her condition is untreatable.  Little point in dwelling over the disagreement over diagnosis: I have already referred to that in earlier blogs.  Where the Image result for Blowing the whistle graphicwhistle has to be blown is on what has followed; particularly from social services.

This is far from a personal attack on an individual: I have already blogged on Mission Impossible.  This is me being open about the Exocet I now need to fire to attempt to bring some sanity into the situation here.

It appears that there might well be both cultural, and systemic, problems within social services.  There may also be questions about capacity and resources. Nevertheless, from what we have seen there is little sense in what is going on at the moment.  You just wonder with economic austerity being predominant in this country why we continue to spend public money on the type of charade that I am about to outline.

I had alerted social services to the fact that my mission is now becoming impossible.  Maureen’s presentation has changed and is putting  her welfare, and my health, at risk.  More support is needed from paid carers.  The response from social services is bewildering.

Our social worker called last week: she stayed for a couple of hours chatting to Maureen.   Why two hours you might ask?  After all the client has dementia and a very limited concentration span.  The outcome of her vist: zilch; absolutely nothing in terms of additional support.

So a social worker spends a couple of hours on the sofa and we are left to get on with it.  Questions about the purpose of her visit have to be raised.  Maureen’s presentation remains the same.  In fact, the immediate impact of the visit was to increase her distress and fears.

I have appointments arranged to meet Senior Officers from the Clinical Commissioning Group and social services in the coming weeks.   I intend to question whether their services are be fit for purpose.  I now hope to bring those meetings forward.  I just wonder where a ‘duty of care’ under the new Care Act figures in all of this?