Dementia: ‘Lean On Me’

General

We both had a good day yesterday.  I had a positive meeting in the morning with Gary my social worker.  Shortly afterwards I was discharged by St Hugh’s Hospital because, with Oliver’s exercise regime, I have managed a significant improvement in my left shoulder.

Our afternoon siesta was very restorative and we followed it with a lovely time in the centre of Cleethorpes.  Our mission to find an 18th Birthday Card was very successful thanks to supportive staff in the Card Factory. We then had a refreshing walk on Cleethorpes Pier and popped in to see Nigel the Clock Man to get a battery in Maureen’s watch.  As always we chatted to Nigel for a while about all sorts of things.

We took advantage of the sound purchases we had made earlier with Quorn Burgers for tea.  Then we overplayed ‘Hidey High’ and both dropped off until it was time to take to bed in our downstairs abode.  Following a bathroom visit at 3am we both retired to the marital bedroom where we slept fitfully until 5 am.  During this time Maureen has been repeatedly asking for her mum and wanting to go home.

Fred’s Story shows in graphic detail the daily struggles for anyone trying to support a loved one with dementia:

We might have had a good day yesterday but that has been long forgotten.  This morning Maureen is preoccupied with wanting her mum and to go home!

I’ve been using YouTube to try to lift Maureen’s spririts this morning.  My musical message to her has been quite simple:

 

Dementia: The Dangers of DIY

General

Image result for Up and Over Garage Door Picture

We didn’t make our trip to Louth yesterday.  Once again the clothing crisis took its toll and Maureen spent large parts of the day sleeping off her frustration that her things had been stolen and replaced with unsuitable gear.  With time on my hands I pottered in the garden keeping in touch via the Baby Monitor. Maureen kept an eye on my progress by occasionally popping outside to check up on the Constant Gardener. Things went relatively well until complacency led me to put the cat amongst the pigeons.

Our up an over garage door has not been moving as it should for a while.  It took me a while to realise that the problem needed an expert and I arranged for the man to come on Thursday morning.  Then I wasted over an hour seeing if I could do the job myself and Maureen paid a heavy price.

Towards the end of the afternoon Maureen woke thinking she had been neglected all day.  She charged off into the street to tell others that she had not been fed or watered.  Fortunately, Kate our next door neighbour was returning from walking her dog and intervened to good effect by applying TLC; including ushering Maureen back home.  There are clear lesson from this saga: my days of DIY are over and out of sight is no longer out of mind when your wife has dementia!

Maureen woke at 3 am this morning in despair that she ‘didn’t like it here without her mum’.  YouTube has been applied liberally and she has sang beautifully to some old favourites.  She has also been fed and watered.  Breakfast will be supplied, on demand, when she next wakes – I can’t risk losing my reputation for ‘doing a good job’!

 

Dementia: Strictly Transformed

General, Uncategorized

Image result for Strictly Come Dancing Picture

It took over an hour for the three of us to transform out lounge/bedroom yesterday morning.  It now seems far more spacious, with a dance floor emerging in exactly the right spot.  Maureen and I were too tired last night but I hoping that we will soon be ‘tripping the light fantastic’ in our new Dance Studio.  I have already dusted down the DVD’s to remind us of the steps in a first move to returning to our Social Dancing Group.

The other good news from yesterday is that I returned from an evening trip to Tesco with some remedies for Maureen’s sore mouth and tongue.  We now have a mouthwash that compliments the Gengigel gel recommended by our dentist during a previous outbreak.  I am  hoping that a softer toothbrush and Corsodyl toothpaste will help bring Maureen some relief and possible cure from what threatens to become a chronic condition.

We have cancelled today’s Carer Sit as we are planning a trip to Louth a small Market Town a short distance away.  When we have had enough of wandering around the shops we can visit nearby Hubbard Hills for a walk in beautiful surroundings.  If the sun comes out  we will be able to watch young children enjoying themselves in a stream that flows through the area.

I realise that it could be one of those days when the best laid plans fall by the wayside.  Maureen has already been stressing that she wants to ‘go home’ but for once has said ‘there is nowhere to go’:  so your guess is as good as mine as to where we will be by noon!

 

Dementia: A Positive Start To The Day

General

Image result for Positive Start To The Day Picture

Maureen has been inspiring this morning with her enthusiasm for improving our lives.   She had a smile on her face as soon as she opened her eyes,  keen to appreciate how pleasing the lounge/bedroom is on the eye.  Her nurturing nature came to the fore as she redesigned our layout to make sure that my sleeping quarters become free from draughts.

It has been lovely to see Maureen in such a creative mode this morning after a difficult day yesterday.  Her cold, along with a sore mouth and tongue, were clearly taking their toll as she spent large parts of the day on the sofa.  She did manage to come round for a while in the afternoon and I heard lots of laughter as she chatted to Dianne our carer as I prepared Sunday Lunch.

I managed to change my status in the evening with a selection of remedies for her soreness.  It’s amazing what choc ice and selective sandwiches can do for your reputation when you are seeking status as a naturopath, rather than a waste of space.   I then added to my prowess when I created an enjoyable hour or so with lots of our favourite numbers on YouTube: Maureen labelled it ‘Music While You Work’.

Pressing for a late night collection of bread in Cleethorpes may have been pushing my luck a little too far.  Maureen didn’t seem particularly comfortable as we took  in the night-life around the Market Square:  although we both enjoyed reminiscing over our ‘misspent youth’ in Amusement Arcades, looking at the latest ways of extracting money from the punters.

The holidays are over for our Care Team today and we are back to normal – what a risky thought with dementia having an influence on events!.  Chloe will be here at ten to honour Maureen’s hairdressing appointment.  It will be interesting to see if we can multi-task this morning and carry out Maureen’s ideas to revamp the lounge/bedroom.

Dementia: ‘Winging It’

Mixed Dementia

Image result for Winging It PictureYesterday I tried to coax Maureen to come out of her shell .  I persuaded her to move from the sofa to a nearby Car Boot Sale before breakfast as I returned some faulty socks and sought batteries for my Tens Machine. It was simple to encourage her to accompany me on my mission as helping me to relieve pain (now in my right shoulder) attracted her nurturing nature.

On our homeward journey Maureen became confused when I asked her to buy the Daily Mail from the corner shop.  She suspected I was a playing a trick on her as I nudged her forward from the driver’s seat of the car.  In the end I eased her through the shop door and she returned with the paper, along with the correct change.  The shop owner has always called her ‘darling’ and yesterday was no exception: he continues to be supportive whenever Maureen ventures into his shop.

Following a rather late lunch Maureen spent a long time clearing up the kitchen.  I’m wondering if this might become custom and practice; with the cook able to rest while his wife tidies up the clutter in the kitchen.  One thing I’m pretty sure of is that comments are on the horizon about clearing up my mess as I go along, rather than leaving the kitchen like a bomb-site.

Maureen took to the sofa for most of the evening; waking a couple of times complaining of a sore mouth and tongue.  On one occasion she told me it was pointless me being here if I didn’t have a remedy for this chronic condition – Mrs Dementia at her best!.  She has forgotten that we have remedies at hand but none of them seem to have any long-term impact on this condition.

Lots of people are at pains to point out I’m ‘doing a good job’ and when I tell them of Maureen’s presentation they say ‘bless her’.  The reality is ‘I’m Winging It’ and she is sneezing a lot at the moment! refetced on the other day.

This morning’s reality check is that Maureen has just woken saying that I’m keeping her here and she wants to go home.  She is concerned that no-one else wants her: the loneliness of dementia- something that Kate Swaffer reflected on yesterday.

 

World Alzheimer’s Month 2016

Uncategorized

Some important statistics from Kate Swaffer to open World Alzheimer’s Month.

Kate Swaffer (she/her) Kaurna Country's avatar

Well, technically it is Day 2 of #DAM2016 in Australia, but as it is before midnight on September 1 in the UK, I could also say it is Day 1 of #WAM2016! I have not been here at all lately, in part due to health issues but also trying almost desperately to keep up with my studies. But actually I really miss blogging more regularly, and feel I need to make an effort to at least be a bit more active for September. My sleep patterns are, like many with dementia also tell me, totally changed, and if being awake at 3 or 4 am means I have the time to write a blog, then that has to be a positive. Right?

Screen Shot 2016-09-01 at 4.03.29 PMI’d like to start with a survey done by Alzheimer’s Australia they released yesterday, as part of their Dementia Awareness Month activities. In this survey of more than 1,500 people , including people…

View original post 362 more words

Dementia: Seeking The Butterfly

General

Image result for Butterfly Emerging from Chrysalis pictures

My support session with Mel went well in yesterday morning as did contact with social services in the afternoon. Maureen’s feelings about Chloe being back were mixed.  She greeted her like an old friend but relayed concerns after she went on to her next call.

Maureen’s comment that she felt like she was living in a Care Home really rang home as we tidied up the washing line together.  It added to a something she said ealier on about being watched all the time.  She went on to say that she had lost her confidence and the constant surveillance was not helping at all.

I have been thinking about Maureen’s concerns: they are valid and require a considered response. My task is to create opportunities for her to regain her confidence and find purpose in her life.  Little wonder that she hates living here – feeling patronised in her own home.

Today provides an opportunity to start a new regime that is Maureen led.  I realise that it is difficult for her to make decisions, so I plan to suggest some simple options.  The test will be if I can slowly ease her forward  to regain aspects of her confidence.  If I get it right I know Maureen will come out of the shadows and astound those who see Prescribed Disengagement as the panacea for dementia.

I’m confident the butterfly will gradually emerge from her chrysalis!

Dementia: ‘It Don’t Get Much Better’

General

Image result for NaviGo Dementia Picture

I have a scheduled appointment with my Admiral Nurse at 10.30 this morning.  This is always a BOGOF deal as Mel used to work for the Home Treatment Team.

My 8.30 am call to our Single Point Of Access will result in contact from a Duty Social Worker whilst I’m meeting Mel.  It don’t get much better than that as I try to accommodate changes in Maureen’s presentation.

Little wonder that NAViGO  received natiional acclaim for their approach to dementia. Sister services within the Local Authority such as Focus Adult Services also deserve similar recognition.

Dementia: Another Pyjama Party

Uncategorized

Image result for pyjama party picturesI too signed up for the the Pyjama Party last night and it paid off as we wandered around the night spots in Cleethorpes at midnight.  My attire was well received and I was struck by the kindness of the locals.  I hopefully eased the concerns of one doorman by mouthing that Maureen had dementia: goodness knows what he thought I had when he saw my attire.  The good news is that the place really comes to life tonight so the availability of company at midnight and beyond is even greater

We eventually managed to get some rest at 2.30 am with Maureen anxious that I shared her bed.  Her fear at the moment is paramount and it is possible that it is linked to the concern about being homeless.  One of her realities yesterday was that we had eloped to the coast together leaving our children in the care of our other halves.  She was at pains to tell me that we shouldn’t have let our hearts rule our heads and feared being thrown out when she confessed all.

Maureen son came to our rescue at 10.30 pm his response to my cry for help calmed his mum somewhat.  Just the sound of Colin’s voice seemed to relax Maureen but dementia meant that she soon forgot his short-term magic.  I have declined his offer to come over today as I’m hoping that Chloe may give us a foothold this morning.  She is back from holiday this morning as is Gail next week.  With Dianne here tomorrow I’m hoping that as the holiday period for Carers is drawing to a close we may reap the benefit.  However I need to say at this juncture both Hica and Hales our respective Care Agencies are pulling out all the stops to support us as Maureen’s condition continues to challenge us all.

I had an excellent meeting with Hica on Wednesday.  They have taken all of my concerns seriously and remedial action in the form of additional training is underway.  Sadie has pulled out all the stops in the last two weeks to ensure that replacement staff are known to Maureen and have experience and expertise in dealing with dementia. The one exception was Claire who came yesterday and she got on with Maureen like a house on fire.  Have to break off now as Maureen is awake and scared out of her wits again ……….something connected with people being burned on a train.  I’m hoping that tea and TLC will help her get back to sleep!

Dementia: Struggling To Post

Uncategorized

The pressure is on here like never before or so it seems.

Maureen is extremedy frightened and confused. She is skipping between time zones in her life like nobody’s business.

My  Lap Top is being sorted I dare not go upstairs to use my Desktop because it is risky to be out of Maureen’s  line of vision.  Thank goodness I have a new phone but I’m not finding this easy!

Normal service will be resumed as soon as possible. 

We might be out for another walk in the dark again shortly as Maureen  can’t seem to rest.