Category Archives: General

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

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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

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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:

 

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:

 

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!