A lazy blog!

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I clearly need to get to Australia as soon as possible to help Pete sort out his ‘lazy’ wife. If Kate Swaffer is ‘lazy’ I hate to think what us ordinary mortals are!

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Published today, I wrote this a while ago for The Huffington Post… The copyright terms allow me to publish it in full, which I have done for my very lazy blog today!

I Was Diagnosed With Dementia At 49 And It Was A Gift

There are more than 47 million people diagnosed with dementia and I am one of them. I was diagnosed at age 49, then a mother of two teenage boys.

In 2006, I started to experience symptoms of acquired dyslexia and other concerning cognitive changes, including some long and short term episodic memory loss. Initially it was relatively easy to compensate for the changes. Eventually they started affecting my work, and I would often get lost while driving the car.

I was rather blasé about it, thinking these changes were due to my brain surgery in 2005, and mentioned them in passing at a regular neurologist appointment…

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Dementia: Finding The Right Support

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Maureen and I had very different days yesterday: she just couldn’t get comfortable; lots of people provided me with comfort.  Whilst I found support from all sorts of quarters Maureen couldn’t find anything that gave her what she was seeking.  I had a good day using my hands to do all sorts of things all Maureen could do was throw hers, and clothes, into the air in despair.

Chloe, our Carer, will be here at 1o am and my suggestion will be to make it a ‘Comfort Day’: to try to help Maureen find more suitable clothing.  I will leave them to it as Maureen is unlikely to want a man in the house as she tries on some of her outfits: although that didn’t seem to bother her yesterday evening when she sat topless eating sandwiches after off after throwing her sweater to the floor.  

Saturday and Sunday pose other possibilities as Dianne will be here for the second time. She made an immediate impact on her first visit a couple of weeks ago, so I’m optimistic that she can take up the slack if Chloe is unable to make much progress. Whatever happens there will be no repeat of an incident a month or so ago when an uncompromising Carer debagged Maureen, humiliating her in the process: that woman will never darken our door again.

It’s more work in the garden for me today as I try to fade into the background and let Chloe work her usual magic.  I wouldn’t make a living out relaying paving slabs but manual labour is good for the soul.

I’ve been up early this morning and I’m optimistic we are in for a better day.  Maureen seems exceptionally chirpy and has already put washing on the line.  As always I’ve played music to lift my mood and have posted four of my favourites on my Good Music page: I’d be interested to know what other Care Partners do when they need to lift their spirits.

Dementia: Regaining A Life Of My Own

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Be honest about what’s right, as well as what needs to be changed. Be honest about what you want to achieve and who you want to become. Be honest with every aspect of your life, always. Because you are the one person you can forever count on. Search your soul, for the truth, so that you truly know who you are. - via: http://www.marcandangel.com/2011/12/18/30-things-to-start-doing-for-yourself/:

Yesterday I shared my aspirations to make a Fresh Start and this drew some helpful advice from a number of quarters.  Trying to persuade Maureen to go to a Day Centre is important if I’m to regain a life of my own.  It’s not going to be a simple matter and I was very grateful to receive this advice, via LinkedIn, from Anne Kingsbury yesterday:

‘I work in a Day Centre and we often struggle to get people to accept respite. So many people trying to do it alone or with only a few in-home services. I just want to say as someone bringing in loved ones to a new environment “stay with it!”. It takes time for new connections and routines to be established. You and the Day Centre will become partners I hope. Remember if they ring you with feedback or questions try not to hear this as them complaining – they are trying to build the whole picture and get more clues to what is happening for Maureen so that they can better serve her (and you). Wishing you all the best’.

I spent time yesterday in discussions with the Manager and a Senior Carer at Royal Court Care Home preparing the ground for Maureen’s initial visit.  They are a very well organised outfit and I continue to be impressed by their professional approach.  Royal Court is clearly dementia friendly and offers a real prospect of meeting Maureen’s needs and helping me to gain much needed respite from my caring role.

Following my request Gary is now my social worker and our ‘Working Position’ is to ease Maureen into Royal Court next Tuesday.  We have decided that Charlotte our regular Carer will attempt to cajole Maureen to ‘dip her foot into the water’ as close to 10.30 am as possible and I will pick her up at 5 pm.  If all goes well we will use the same arrangements on Thursday.

We are all aware that Maureen may resist any attempt to move her from her home: hence I have postponed any attempt to visit family in Coventry next week.  Yesterday she ‘played hell into me’ for going out and leaving her with a Carer.  Once again she returned to a familiar theme of married couples doing things together rather than one or the other going out alone.  Yesterday evening and early this morning Maureen’s mood is particularly low and she sees living here as the cause of all her discomfort including: having no friends; a persistant sore mouth; people stealing her clothes and lots of things smelling.  

As always I have a number of strategies up my sleeve to try to elevate Maureen’s low mood.  I have no doubt that Good Music will give her a lift and her favourites will be on the next time she wakes.  I have also printed a To Do List on a whiteboard so that we don’t let depression lead us down a road of not being able to do anything.  I persuaded Maureen to have a shower and wash her hair yesterday – a trim and a bit of colour can only help to lift her spirits if I can move her in the direction of Mark her hairdresser this morning.

Edit: It looks like it’s going to be a rough one: a polo neck sweater has been thrown on the floor and Maureen is currently sitting in her underwear ‘up top’ and that is too tight!.  Tea has been poured into the sugar bowl and spat out as too cold with the thought that someone had left it there and perhaps a tramp would like it.

Thank goodness Gail will be here in a couple of hours and I can have a break from watching such a sad scene unfold.

Dementia: A Fresh Start

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Yesterday heralded a new beginning oin my role as a Care Partner for Maureen. For once I am going to have a Support Plan for myself.  This seems preferable to the fudge I have endured from the past where a joint plan has been seen as expedient.

It was the first time I had met  Gary, my new social worker, and  I was impressed with the professionalism with which he guided me through the Carers Assessment process.  I am going to request that he remains as my social worker: it is time for a fresh start.

Gary will forward a draft of the Support Plan to me shortly.  It will become a vehicle for me to develop a life of my own alongside being Maureen’s Care Partner.  One of the immediate priorities will be introducing Maureen to Day Care at Royal Court Care Home on Tuesday’s and Thursday’s. This will give me a day to do my own thing rather than a couple of hours which is a feature of the past.

We are hoping that once Maureen settles to the routines of Royal Court opportunities for significant respite, with overnight stays, will emerge.  This is preferable to Agencies struggling to source home- based care while I try to steal a couple of nights off duty.

I’m excited by the prospect of having a life of my own once again.  It is time to think of myself and my own aspirations, rather than focusing exclusively on the needs of someone who has dementia.  I am confident that I have the necessary support available to enable me to make brave choices at this juncture in my life.

 

Dementia: I Started A Joke

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I played a joke on Maureen yesterday afternoon by telling her I had to go to Coventry.  When she asked me if something was wrong I told her that yes there was: the Sky Blues had yet to score a goal in the League this season and they needed me to play as a centre forward tonight.  She got me back with a vengeance early this morning.  At 0ne’o’ clock she was on the move putting on the light in our lounge/bedroom.

As I came round I wondered if I was going to see a repetition of her behaviour at 10.30 pm when she opened the front door, went outside and was extremely confused about her whereabouts.   It had taken me some time to settle her after this episode; as she repeated that she had ‘lost her memory again’. Maureen always stresses that she ‘lost her memory short-term’.

Maureen’s presentation shortly after midnight was quite different to her moonlit appearance: she was in hysterics over one thing or another for about an hour before she drifted back into sleep.  I did manage to take a video clip of Maureen’s antics as she performed well for the camera.  Unfortunately, my WordPress Plan does not support video so my still was taken earlier in the evening when she had been singing along to Nat King Cole.

The rest of the morning has been far from funny as I’ve  had to play Musical Beds to try to address Maureen’s fears.  Her constant concern has been about other people being able to get into her room.  Eventually, I placed myself alongside her on the marital bed assuring her that she was safe with me by her side.

She had the giggles several times during yesterday afternoon but not as pronounced as this morning: such episodes may be a feature of dementia.   I have also seen her scared witless previously: particularly following her experiences in Ladysmith Road Care Home..  It will be interesting to see how she presents in the next 24 hours.  I will discuss her current presentation with Gary our social worker when we meet this morning for my Carers Assessment.  Some suggest the full moon impacts upon presentation and that could have been a trigger for the events of the last 12 hours.

One of my favourites from the Bee Gees brings this post to another a musical conclusion:

 

Music and Dementia: The importance of multidisciplinary perspectives

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Thanks for highlighting this work Kate Swaffer.

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I was really pleased when Clarissa asked the #demphd community for blog posts, and I thought I would take this opportunity to talk about the importance of taking a multidisciplinary perspective in dementia research.

First I thought I would just give an overview of the work that I will be doing, and then go onto explain why I believe taking a multidisciplinary perspective in my research will benefit my understanding of why music is beneficial to people living with dementia. The aim of my PhD is to work collaboratively with people living with dementia to first understand their ‘in the moment’ multisensory experiences when engaging with a participatory music project facilitated by the Manchester Camerata(a fantastic orchestra and charity I will talk about shortly!), and then work with people living with dementia in order to develop a music assessment tool. My aim is to make the project as participatory…

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Dementia: Moving Forward

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My middle daughter says she knows where she gets her impatience from: I’ve suggested it must be from her mother my ex-wife.  Well Anna if you are reading this I have listened to you, and accepted that ‘slowly slowly catchee monkey’ can pay dividends.

My long awaited Carers Assessment has been rearranged for tomorrow morning at 10.30.  We are meeting in the cafe at Harrison House the local Mental Health Unit.  I often choose to meet professional staff there as it reminds me of the time I was Sectioned after taking far too many paracetamol a few years ago.

Harrison House is another example of the quality of Mental Health provision in this area.  NAViGO have established dedicated provision where skilled personnel work hard to help people like me to put their depressive episodes into context.

If time is on my side tomorrow I will drop off another pack of choc ices for hard working staff and patients.  Such natural remedies for depression can make all the difference when your life doesn’t seem worth living.  As my cyber friend Irving Kirsch has proved antidepressants are no better than a placebo for treating mild to moderate depression:

 

Dementia: Thank Goodness It’s Monday

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All my working life I looked forward to the weekend when I could choose how to spend my time.  Now as a Care Partner it is quite the opposite; hence TGIM.  For the next five days there is the possibility of having a couple of hours off duty as our regular team of Carers will be here.

I’m also hopeful that Gary our social worker will be back at work today and we can put the finishing touches to my Carers Assessment.  Duty Workers seem to have given the Green Light to my aspirations but I will need to contact our Care Agencies today to make sure that the jigsaw of care that is needed is firmly in place.  There have been so may Red Lights in the past that I’m cautious when I’m getting Amber Signals about who will be sitting with Maureen when I’m out of town.

I am no longer prepared to accept that my wife should be left with ‘strangers’: who can’t find keys to our front door; fail to feed her; humiliate her over personal hygiene; find her asleep on a lounge floor; give me dubious accounts of how she sustained a black eye and a bruised back .  It is taking time for the investigations, that I have requested, to be concluded and I will be taking legal advice if I conclude Maureen has been neglected by those who have a ‘Duty of Care’.

Chloe, our longest serving Carer, will be here shortly: she always treats Maureen with dignity and respect.  I have yet to meet anyone who has such a sound working understanding of dementia and am indebted to her for helping me try to get up to speed.

It will be good to be able to get out this morning; something I haven’t been able to do over the weekend as I had to ease Elaine into working here.  I would gamble that Chloe will give Maureen one of her Pamper Days and my Blonde Bombshell will be waiting for her lunch on my return.

Always best to start the week with a song:

Dementia: Sunday Afternoon Coming Down

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I have just arisen from a welcome afternoon siesta and I think Kris has it in a song.  I didn’t know where I was when I woke up.  It has taken a shower to help me ‘come round’. Goodness what it must be for Maureen every time she wakes after ‘resting her eyes’: no wonder she always thinks it’s a new day and time for breakfast!

Dementia: Look closer.. see.. ME !!

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This man died alone in an old age home. What he left behind brought tears to everyone’s eyes

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It seemed like a usual nursing home with usual patients. However, in that dull space somewhere there was a man who was beautifully scripting about his life during his last days in a form of heart-touching poem. Mak Filiser, 86, died in the geriatric ward of a nursing home and since he had no visitors, the nurses believed that he left nothing behind of any real value.

But the day a nurse came to clean out Mak’s room after he passed on, everything changed. One of the nurses noticed something. It was a poem that Mak had written. She proceeded to read it and was so floored by his words that she ended up making copies of it and sharing with every employee at the nursing home.

In today’s world when children are leaving their parents at old age homes, this should be an eye opener. Our parents and grandparents raise us, care for us, and love us and then one day we forget all about them. The poem is entitled; “Cranky Old Man” and it no doubt give us some very valuable lessons. Take a look…

Cranky Old Man by Mak Filiser

What do you see nurses? What do you see? 

What are you thinking…when you’re looking at me?

A cranky old man…not very wise,

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Uncertain of habit…with faraway eyes?

Who dribbles his food…and makes no reply.

When you say in a loud voice…I do wish you’d try!’

Who seems not to notice…the things that you do. 

And forever is losing…A sock or shoe? 

Who, resisting or not…lets you do as you will,

With bathing and feeding…The long day to fill?

Is that what you’re thinking? Is that what you see?

Then open your eyes, nurse…you’re not looking at me. 

I’ll tell you who I am . . . . .. As I sit here so still, 

As I do at your bidding…as I eat at your will. 

I’m a small child of Ten…with a father and mother,

Brothers and sisters…who love one another

A young boy of Sixteen…with wings on his feet

Dreaming that soon now…a lover he’ll meet.

A groom soon at Twenty…my heart gives a leap.

Remembering, the vows…that I promised to keep 

At Twenty-Five, now…I have young of my own. 

Who need me to guide…And a secure happy home.

A man of Thirty…My young now grown fast,

Bound to each other…With ties that should last.

At Forty, my young sons…have grown and are gone,

But my woman is beside me…to see I don’t mourn.

At Fifty, once more…Babies play ’round my knee,

Again, we know children…My loved one and me. 

Dark days are upon me…My wife is now dead. 

I look at the future…I shudder with dread.

For my young are all rearing…young of their own.

And I think of the years…And the love that I’ve known.

I’m now an old man…and nature is cruel.

It’s jest to make old age…look like a fool.

The body, it crumbles…grace and vigor, depart.

There is now a stone…where I once had a heart.

But inside this old carcass a young man still dwells, 

And now and again…my battered heart swells 

I remember the joys…I remember the pain.

And I’m loving and living…life over again.

I think of the years, all too few…gone too fast.

And accept the stark fact…that nothing can last.

So open your eyes, people…open and see.

Not a cranky old man.

Look closer…see…ME!!