Dementia: Real Respite At Last?

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I spent a considerable part of last week trying to find a suitable place for Maureen to go while I have a much-needed break.  During this time Maureen’s Care Coordinator said to me something along the lines that ‘I wouldn’t find a perfect place’ but hearing on previous occasions that she has escaped or finding her bruised and battered whilst in the care of others is beyond the pail.

It is less than a month since my last ‘Respite Break’ which turned out to be nothing of the sort.   When you get to bed after a long day nudging your wife into Residential Care and the phone rings advising you that ‘she isn’t settled’ the writing starts to appear on the wall.  If you spend the next day seeking to avoid her being moved to an Enhanced Unit that is far from ‘respite’.  Then you are ‘bounced’ into paying almost an additional £100 one to one care through the night the writing is firmly on the wall.   To cap it all, despite an additional member of staff, this establishment continued to fail to get her to bed until the early hours and not at all on the last two nights.

When I  decided to bring her home after five days so she could get some rest things turned from bad to worse.  We had to spend  8 hours at Accident and Emergency at our local hospital to gain Maureen relief from extremely painful constipation.  This problem was visually obvious once I encouraged her to take a bath.

After our meeting with the new Manager at Ashgrove on Friday, I’m optimistic that this time I have found a solution to actually having a Respite Break.  All I have to do today is to get Maureen there with the minimum of distress and then leave them to it!

 

Dementia: A Rude Awakening

Mixed Dementia, ,

Image result for A Rude Awakening Dementia PictureI had a rude awakening from yesterday afternoon’s siesta.  I rushed downstairs to find a neighbour at the door, with Maureen standing in her drive looking rather forlorn.  As we tried to entice Maureen back home she stormed off saying ‘of course Paul never does anything wrong’.  I trailed her as she walked around the block before eventually coaxing her home with the prospect of a cup of tea.

It was fascinating to watch Maureen on her chosen route around our neighbourhood. She stopped several times; occasionally venturing down neighbour’s drives before she neared our home.  We bumped into one or two friendly faces on our journey.  They are now familiar with Maureen looking for me and taking in the fresh air she constantly craves.

Yesterday’s rude awakening has left me in no doubt that tomorrow’s Respite Break is sorely needed.  I just hope that I can stay awake for long enough to make sure that Maureen gets to Ashgrove Residential Care Home in one piece.

I hope it warms up today as our central heating boiler has developed a fault.  A cold house with no hot water might just tip the balance between Maureen wanting to stay here tomorrow or go down the road into the warmth of  Ashgrove.  How strange it would be if it took a while to get the heating working again!

Dementia: Time For Some Self-care

Mixed Dementia

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Maureen will be going into Ashgrove Care Home on Monday morning, provisionally for a week.   I met with the new manager of Ashgrove yesterday, along with Maureen’s Key Worker, and I’m confident that Maureen will be in safe hands and well looked after.

I have agreed not to visit Maureen during her stay in Ashgrove to give her a chance to setlle in in her new surroundings.  On Friday I will meet with her Key Worker to find out how things are going and discuss the best way forward.

I have no fixed plans for my week’s respite other than recharging my batteries.  The quote above, kindly forwarded by my cyber friend Dominique Klotz, says it all!

Update: Maureen woke shortly after I posted the above passages and asked me ‘if I knew where her husband was?’.  My explanations were met with disbelief and the news that ‘I couldn’t be her husband as her parents were paying for her to be looked after here’.  She is currently sitting in the lounge waiting for her first cup of tea of the day to cool looking totally bewildered.  It is really challenging to know how to comfort her when she is not sure who I am: particularly when she continues to be afraid of men!

Vascular Dementia: ‘You Think You’ve Got It Then It Changes’

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As I drove Maureen around last night attempting to deal with her Sundowning I saw a second possible enemy: the full moon.  It then struck me that I was probably dealing with double trouble.

Music had created a very positive atmosphere for us both throughout the day and evening.  Our Night Sitter had an early morning baptism of sound before the end of her shift.  We were still going strong listening to UB 40 when Maureen’s Care Coordinator and a colleague arrived almost three hours later.

In the evening we moved to the dining room with Dr Hook on vinyl followed by Nat King Cole.  As the resident DJ either with YouTube or a record player at hand, I use music to tap into Maureen’s emotional memory of good times that we have shared and her teenage years putting records on the family radiogram.

As the evening light began to fade Maureen became restless and I suggested a trip into Cleethorpes.  Once I saw the full moon through the windscreen of our car  I wondered about the wisdom of my suggestion.  When we arrived back home Maureen went into her ‘I don’t live here’ routine and demanded to be taken home.  After a while, I tried to shift her perspective with another car journey and a ‘party piece’ that had worked on previous occasions.

I think Maureen went along with my ‘party piece’  thinking her ‘trickster’ was just up to another prank saying he had ‘just returned from work’.  It may have been the cold night air that led me to give her insufficient time to forget I had dropped her off a few minutes earlier.  However, it did give me a few minutes to escape from the vitriol of being an untrustworthy geezer who was always kidnapping women!

As a DJ I can always pick them: those tunes that will tap into positive periods of Maureen life:  When it comes to other aspects of her presentation it’s trial and error.   Sometimes my party pieces do the trick at others they add substance to her rhetoric that I’m mentally ill and up to no good.  However,  when the going gets really tough and nothing seems to have any impact I’m consoled by the words of Maureen’s Care Coordinator: ‘with vascular dementia you think you’ve got it then it changes’.

Postscript:

Maureen’s Care Coordinator often tells me ‘you are not a robot’.  With no disrespect to her I think I prefer a ‘machine’ analogy:

References linked to today’s post:  

David Sheard: Feelings

 Oliver Sacks: Music Therapy

Brown University: the benefits of personalised music for residents with dementia in Nursing Homes

Dementia: Mental Exhaustion

Mixed Dementia,

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After a much better night, I realise how mental exhaustion has sapped my ability to think clearly.  Yesterday our Key Worker came to our rescue with a Night Sitter who has been a  breath of fresh air for both of us.   He also encouraged me to explore the possibilities for an immediate Respite Break by placing Maureen in a Care Home.  My task this morning is to reflect on the options for regaining my vitality and ensuring Maureen is in safe hands.  I’m keeping my powder dry at this stage until further discussions have taken place this morning with a number of  key players.

 

Dementia: ‘Baby Come Back!’

Mixed Dementia

Maureen was in great form yesterday from the moment we ventured downstairs.  Our early morning bird spotting went well as we sat in the dining room watching the comings and goings in our back garden.  Then ‘my baby really come back’ as we moved into our lounge.  I’m sure Ali Campbell and Pato Banton brought back such happy memories for her as I called them up on YouTube:

She sang along as she had over 20 years ago when we saw them both in concert.  Then babies dominated the discussion when Girl Tuesday arrived a few hours before her scan that would hopefully tell her that all was in order with her pregnancy.

Girl Tuesday is a very intuitive carer and moved Maureen from the kitchen sink to the shower on the pretext that this was now the only comfortable way to wash her hair.  At three months how on earth could she be expected to bend over a kitchen sink?  Her efforts meant that ‘my baby had really come back’ as Maureen looked great on my return from Cleethorpes Leisure Centre.  Her hair is now a beautiful silvery grey that most women and men would pay a fortune to achieve.

The afternoon progressed in a similarly positive manner.  Our stroll took us to Ticker-T-boo where the staff always go out of their way to talk to Maureen.  I spent a pound on a door alarm and Maureen had a lively chat with the shop assistant.  We then ventured over to the Beachcomber Holiday Camp checking on their preparations for the coming season.  As we turned to come home Maureen thanked me for taking her out saying ‘she was pleased that the locals spoke to her even though they might think she was retarded or mentally ill’.

It is rather ironic that Maureen often attributes her shortcoming to mental illness rather than vascular damage.  It is possible that she remembers my periods of depression and that is clouding her judgment.  She may be reminded of my depressive episodes this morning when I tell her I’m going to meet Paul Martin the Counsellor at Clee Medical Centre.  He built on the good work of Navigo to help me put my depressive episodes into context.  I see Paul every 6 weeks.   I hope to meet Irving Kirsch one day to thank him for his research that  helped me to understand that mild to moderate depression is not the result of a chemical imbalance and does not require a lifetime on antidepressants:

It wasn’t the medication that helped Maureen’s baby come back it was the therapy that helped me understand that depressive episodes were a reaction to my environment!

Image result for home alone picturesUnfortunately, as dusk approached there were significant changes in my environment and Maureen’s presentation.   She began accusing me of ‘keeping her a prisoner’ and wanting to go back to her children.  As is always the case I had no additional staff to call upon and faced a night of being Home Alone!

I was really taken aback by Maureen’s presentation after such a lovely day together. Homefield House reported similar experience during her stay in Respite Care: positive interaction during the day but challenging behaviour once night set in. Eventually, after a protracted battle, I managed to get her to bed by 1.30 pm which is earlier than Homefield House ever managed!

Maureen woke around 4 am asking for guidance to the bathroom.  On her return, she bared her chest to me and told me someone had stolen her underclothes.   She hasn’t been wearing a bra for months but is adamant that someone has been at her bust while she has slept.   I have made several attempts to help her but she is distraught and has been trying to pull up her trousers to support her bust.

I won’t have an opportunity to catch up on sleep today as there is no day shift to come on duty.  Rather than taking rest I will need to summon support as soon as the phone lines open for business.  I sincerely hope that any assessments of Maureen this morning are undertaken by professionals from the Irving Kirsch school of thought: ‘Dump the risky drugs’: adding further chemicals to Maureen’s body when she is already struggling to deal with the progression of her dementia seems rather risky  We don’t need dodgy medication we need additional carer sits if I am to have any chance of avoiding Carer Burnout!

Dementia: A Headless Chicken?

minimising distress, ,

Image result for Rushing Around Like Headless Chicken PictureI had a stark reminder early this morning that I’m trying to do too much.  Last night I was so exhausted that I went to bed at half-past eight and left Maureen to her own devices. Five hours or so later I found her sitting on the sofa looking terrified and desperate to relieve herself but no idea where to find the bathroom.   She was so relieved in all sorts of ways to see me, particularly as there had been ‘a strange man in the room again’.

It is painfully obvious that I’m not able to cover all bases at the moment.  I’m trying to solve too many issues and wearing myself out often running around like a headless chicken.  Tiredness kills when you are a driver: it causes distress when you are a Care Partner.

The bookcase in the lounge has now predominantly become Maureen’s space with lots of opportunities for cognitive stimulation.  I need to summon further support from Occupational Therapy to see how the remainder of the house can become more supportive of Maureen’s needs.  However, too many changes could well cause further confusion and a focus on our lounge towards the end of the month would be sensible.

Maureen’s refusal to engage in personal care or take her medication continues to cause concern.   All carers have been alerted to the need to try and get Maureen to shower and change her clothes.  The medication issue is something I will need to discuss with her GP. The progress on these issues will be reviewed with our Key Worker when he visits on Friday.

The ‘headless chicken’ is also painfully aware of the stiffness in his body after a consultation with a Fitness Instructor at  Cleethorpes Leisure Centre yesterday morning.  He has now decided that hydrotherapy is preferable to Tai Chi and will be walking on water later this morning!  Cue Loudon Wainright:

Footnote: Just had a lovely moment after seeing Maureen looking tearful.  When I asked her why she was looking so sad she said:  I’m going to miss you when I go home.’

 

 

Dementia: Expensive Distraction and Redirection

Mixed Dementia

Image result for Mitsubishi ASX PictureShortly after breakfast yesterday Maureen asked me ‘if I was ready to go home’.  She looked so distressed as I dithered trying to think of how to distract her from her focus.  My initial ploy was to talk about buying a new car as our Space Star is 15 years old.  Maureen seemed to warm to the idea and told me I should treat myself.  Then I decided to play a trump card by introducing a toddler into proceedings.

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I had noticed a delightful youngster across the road on Saturday and encouraged her mum to introduce her to Maureen.  As soon as Hattie Belle was through the door I knew I was onto a winner.  In fact, after she left I wondered if I had bitten off more than I could chew as Maureen appeared to become broody: resolving that little matter would require very expensive conception!

My preparation for this afternoon’s visit by two Occupational Therapists is already paying dividends.  Maureen has been active in the bookcase filling the empty spaces I have created.  A vest wrapped in a tea towel that she brought to me yesterday in is now safely tucked away in its new home.  This followed an attempt to make a cup of tea with pudding rice and hot water.  Although her diagnosis remains moderate to severe dementia her functional ability is now a shadow of what it was nine months ago!

Dementia: Where’ve You Been?

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I came across this story a few minutes ago and just had to share it:

Where’ve You Been?

 #1 MUSIC VIDEO – A TRUE ALZHEIMER’S STORY:

When Kathy Mattea first sang, “Where’ve You Been”, she wondered to herself, “Do people want to hear this on the way to work?” To her surprise, radio stations could not play it often enough, as the song struck a deep chord in millions of people. It became the world’s 1st song about dementia to top pop-music charts. It won Song of the Year at the Grammys, CMAs and ACMs.
Watch the Music Video, Lyrics & How The Song Came to Be:

Read more »

Dementia: A Break In Hostilities

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Truce broke out in the ongoing hostilities here yesterday as Maureen and I spent a peaceful day together. The day got off to a good start as for once we woke up together in the same bed. This meant early morning tea took place in the comfort of the marital bedroom.  Maureen has a cunning way of requesting more lubrication by singing ‘I like a nice cup of tea in the morning’.

Just to put the record straight, sneezing was the main activity in the bedroom as both of our colds said ‘good morning’.  This again gave me an opportunity to show TLC by providing an endless supply of tissue. Maureen remained in good form as we moved downstairs for breakfast.   A couple of hours later she was asleep when Girl Saturday arrived.: on waking her response was remarkable.

I had changed a Carer Sit call to a Domestic as we were in need of assistance with ironing and cleaning.  As I pottered in the garden I saw Maureen show how pleased she was to see Girl Saturday, ironing in the kitchen, greeting her with a hug along with a beautiful smile.  Two hours later ‘the girls’ had made the house cleaner and tidier.  Such an about turn by Maureen who often complains that the carers have made her work!

We spent the afternoon dozing in the lounge.  As we enjoyed an early evening stroll around the block the chilly air convinced us that we had made the right decision to cancel our chauffeur, stay local and rest, rather than enduring a long car journey to catch up with family.

Maureen went to bed at seven last night and it was half six this morning before the Tea Boy was on duty.  As I type this post I’m awaiting a musical hint that her cup needs replenishing!