Tag Archives: Tiredness

Dementia: It’s All Been Worth It

Mixed Dementia, ,

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The struggles of the last few months all seemed worthwhile yesterday when our visitors from Occupational Therapy made it clear that they supported our approach to ‘seeking the good life’.  They were impressed with our extension and how we have attempted to prepare for what might lie ahead.  They also supported how I attempt to resolve issues of independence and safety.  Once we have made a couple of minor changes to our set up OT feel that we have addressed all predictable risks.

Maureen was in exceptional Hostess Mode all day.  Her intelligence and humour shone through as she showed OT the ropes.  She continued in a similar vein when in the company of my sister and brother in law.  In fact, she was in such good form that there were occasions when some observers may have questioned her diagnosis of dementia.

Maureen has paid a heavy price for the overstimulation that I subjected her to yesterday.  She is now hyperactive and has not slept all night.  I should have left things as they were with my sister visiting today.  I’m paying a small price for my naivety as I try to support a very confused wife this morning.

We appear to be on a Cruise Ship again this morning.  I hope Maureen is not too disappointed when we dock at Grimsby:  we couldn’t possibly pull into Cleethorpes with the tide going out!

 

Dementia: Coaching Needed!

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Image result for Coach needed PictureA frequent lack of cognition, paranoia, hallucinations, and anger are now constant features of Maureen’s presentation.  Last night was a belter.  The old chestnut of finding the toilet and how to use it reappeared.  This was followed by a diatribe on my misdemeanors and shortcomings.  Then comfort was sought as I slept in the spare room as Maureen believed ‘the girls were gassing her as they didn’t like her’.  A  short while afterward I was forcefully told ‘I was not doing’my job’ as I encouraged her to get her own drink of water.

Maureen’s presentation is seen as par for the course for mixed dementia so a Care Coordinator is not needed.  Yet Trazodone has been prescribed ‘to make my life easier’.  Following my reluctance to administer, a planned admission to an Acute Mental Health Unit – the Konar Suite – was on the cards.   Now that is not seen as the way forward we are left with the Best Interest Meeting on Maureen’s future care and accommodation in four weeks time.

Our Key Worker is visiting this afternoon and I will ask him to clarify who is responsible for coaching me on how to resolve the recurrent ongoing challenges.  A meeting in four weeks time may be helpful to those who are concerned with the Mental Capacity Act but I need mentorship now!

Someone who doesn’t need coaching is a new carer we had yesterday:  she was excellent from the time she took Maureen’s arm when she met us on the street.  Maureen fell asleep shortly after she was nursed home and new Gir Saturday/ Sunday helped me to mop up from the flood that Maureen had caused by leaving the tap on with the plug in a sink.  Just another occasion when I’m wise after the event: plugs and sinks don’t mix when dementia is around!

Dementia: ‘Handle With Care’

Mixed Dementia, ,

This has to be the song of the week:

  • There are some lovely shots of Tom Petty who died this week.
  • My late wife would have been 71 yesterday and she loved Roy Orbison.
  • Rob my brother in law ‘has backed’  Geoff Lynne.
  • Bob Dylan is ‘the man’ as far as my Buddist friend Ed is concerned.
  • George Harrison was always my favourite Beatle.

Maureen certainly wasn’t handled with care the last time she went to an Assessment Centre at Ladysmith Road Care Home.  When I visited her on her 77th birthday she had a black eye, a cut nose and a bruised back.  They said she had fallen out of bed – I don’t believe them!  That is why I had reservations about a planned admission into the Konar Suite.  It is the Acute Mental Health Unit for the over 65: hardly the place for someone of Maureen’s disposition. Thankfully, a good night’s sleep brought me to my senses!

I got it seriously wrong last night by trying to negotiate my way into bed beside Maureen.  She launched a verbal attack as I tried to persuade her I was her husband and fearing a lunge I recoiled and have pulled something in my right shoulder.  This is a painful reminder that if I don’t handle Maureen with care then I’ll pay the price: a fear of being attacked by men remains.  How sad that such painful memories will continue to haunt Maureen because her emotional memory will remain firmly intact!

 

Dementia: Diagnosis Needed

Mixed Dementia, ,

Posted at 4 am:

 

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Maureen needs to be seen by her GP this morning after another dreadful night.

She had just laid down on the sofa after ‘being on a boat’ for the last five hours.

She is awake now: looking for her mum and frightened about being left on her own

I am asking the GP’s advice on how to manage her current presentation.

I am also formally requesting a review of her diagnosis .

Is her dementia predominantly vascular, Alzheimer’s or something else?

A Best Interest Meeting in a month’s time is no help to me in the middle of the night.

We also both need to know if our coughs and colds are anything more sinister!

Dementia: More Help Needed

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Posted at 3 am:

 

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Our Anniversary Celebrations went well with a day of togetherness.  We didn’t do anything special but I tried to spoil my Bride with lots of TLC.  She loved the evening concert with Andre Reui and despite my best efforts could not understand the consequences of a poor signal from Talk Talk.

Maureen was reluctant to join me for ‘the honeymoon’ and chose to remain downstairs,  The Baby Alarm clicked into action at midnight with incessant sobbing from our lounge.  When I joined her downstairs, Maureen was convinced that they were chopping the heads off her relatives.  She showed me photographs where she believed the heads were missing.  It took me quite some time to console her and persuade her to resume lying on the couch.  Less than two hours later she was awake again.

As I lay on the single bed in our lounge, I was gently awoken by my wife who was anxious to attend to my needs.  Apparently, I was unwell and she was keen to make sure I had everything I needed.  My plea to be allowed to go back to sleep went unheeded and she continued to return to my side after walking around the house.

There are aspects of Maureen’s presentation at the moment that I’m choosing not to share on this Blog.  From my point of view, they are very concerning and I need to discuss such matters with appropriate professional staff.

My plea at the moment is to reinstate support that used to be available in my hour of need.  I have never understood the wisdom of withdrawing Maureen’s Care Coordinator or removing my access to a Support Worker from the Alzheimer’s Society.

This is a time when I need more support not less! 

Dementia: Too Much Pressure

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Posted at 3.30 am

Today’s music is particularly pertinent:

Our house is now a complete mess: nothing like the order that Maureen has lived in all of her life.  We emptied our dining room so the walls and ceiling could be reskimmed yesterday evening.  The bookcase that Maureen has claimed as her own has been emptied:  some of her most precious belongings are in boxes all over the house.  Little wonder she doesn’t know where she is and wants to run away: she is completely lost in her surroundings.

The dining room now needs to be left to sweat – dry out.  Chaos will reign in our household for the next few days.  This will be intensified on Monday when plumbers will be here to begin kitting out our new shower room.

In two weeks time, the pressure will be off and a semblance of normality will return to our household.  We will then welcome visitors with open arms and be able to offer them somewhere to stay as the Sun Room doubles as a self-contained flatlet!

Dementia: Don’t Grieve Conceive!

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Posted at 2.00 am:

 

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I have just phoned the Konar Suite to speak to a Nurse to check whether my support to Maureen has been appropriate.  She was in floods of tears a short while ago because ‘they had found a dead baby’.  This was the second time this week that she has been overwhelmed with this thought.

When I returned from shopping on Thursday the carer told me that Maureen had suffered ‘a major stress’.  Unaware of Maureen’s personal history she had consoled her by telling her that she had been dreaming.  She didn’t know that Maureen’s second born had died at three months when she was twenty-one.  I did and reassured her that the baby knew she loved him and she had done everything she could to keep him alive.

Some of my cyber friends have stressed the importance of coaching for Care Partners. How fortunate that I’m able to call on support from the Konar Suite 24/7.  This morning’s Nurse shared with me that her mother had to go into Residential Care because she was obsessed with a dead baby being in the house.  She had suffered a similar fate to Maureen and the woman at the end of the phone was the solution.   Maureen’s son who we met in Coventry on Friday was seen as the solution to her loss and a  replacement for a young child who never made it to his first birthday.

If carers are to have any chance of providing appropriate support to Maureen they need to have a potted history of her life.  She has had an eventful life and tried to bury some of her bad experiences: as dementia takes its toll they are coming back to haunt her!

Footnote:  Now that I’ve received some reassurance and cleared my thinking I hope to get back to sleep: thanks for listening!

 

 

Dementia: ‘Think Of Yourself’

minimising distress,

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During our adventure yesterday the Activities Organiser at my mum’s Care Home begged me to think of myself.   I have known this woman for a long time as she was a mature student at a local Community College where I managed adult learning opportunities.  She asserted that I needed to look beyond caring for Maureen: that something would happen that would mean I could no longer look after my dear wife.

Our visit to see my mum followed calling in to see my brother in his Nursing Home.  He only woke for a brief period of time as we sat by his side doing all we could to gently wake him.  As always he treated us to his beautiful smile and chuckled briefly before he drifted back to sleep.  Perhaps his morning shower had worn him out as he seemed exhausted; continually yawning, as he slumped comatose in his favourite spot in the dining room.

Maureen loved seeing my brother: remembering our last visit when we both danced holding his hand.  Unfortunately, we couldn’t put on a similar performance yesterday but we managed to give mum her usual treat.  She campaigned for a trip out as she always does when you go to see her.  The Ice Cream Man was not on duty at a local park but the Cafe was open and she assured me that her kit-kat special would not spoil her dinner. When I took her back to her seat in the Resident’s Lounge she begged me not to leave her, so I told the familiar white lie that I would be back shortly.

When I look back at what I did next I’m  not sure who I was thinking of – it certainly wasn’t Maureen.  We made it to a local pub on time where I had arranged for her son to meet us along with her granddaughter and son in law.  Their arrival was staggered and Maureen had some special time with her son before the others arrived.  She clearly loved seeing them all and the attention she got from one particular friend in the pub.

Maureen is worn out and very confused this morning.  I will never repeat what I coaxed her into yesterday.  We are both too old to endure long car journeys and busy schedules in Coventry or anywhere else.  It isn’t myself I need to think about it is both of us!

Maureen is not at all pleased with me this morning.  She thinks I’m conspiring to get rid of her and stealing all of her possessions.  I’m not pleased with myself when I reflect on what I coaxed her into yesterday: particularly how little time we spent with my brother and mother. How can I justify rushing way from my nearest and dearest, who both have dementia to meet with other family members?  If that had happened to Maureen I would have been fuming!

There is one positive outcome from our adventure yesterday: it has strengthened my resolve never to put Maureen into a Care or Nursing Home!

 

Dementia: Is Dr Dan The Man?

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Some of my cyber friends have pointed me in the direction of Dr Dan Nightingale.   From my limited understanding of his work, it appears there may be an alternative to Trazodone: the medical solution to Maureen’s presentation.

Maureen’s behaviour became extremely challenging yesterday afternoon when she took off saying ‘she didn’t like it here’.  I followed her around the local area listening to a familiar tale of me ‘robbing, deceiving and abusing her’.  At one stage she confronted another woman who I had never seen before about her involvement in the affair.  The positive about this incident was that she got into the car after reprimanding this poor woman.  An hour later, it took the involvement of two support workers from the Home Treatment Team to persuade her to leave the car and enter ‘her house that I had stolen’.

Maureen was all sweetness and light when the HTT was here.  Following their departure, she sang along to YouTube beautifully for a while before becoming distressed about a strange man in the house.  My attempts to reassure her that she was safe had no impact so I gave her a cup of tea induced with a small amount of lorazepam.  I managed to encourage her to ‘rest her eyes’ but unfortunately by midnight she was on the attack again with a short spell of vindictiveness and sarcasm.

It is not easy to switch off and go back to sleep after seeing your wife out of control and looking menacing with a cheeses board in hand.  Therefore  I’m drafting this post as one ‘o’ clock appears on my VDU.

I’m hoping that Dr Dan will be the man to help Maureen never forget who I am and stop accusing me of being responsible for events in her life that have no connection with me.

I’m also hoping that my Buddhist teachers will help me to stop self-cherishing and recognise the spiritual lessons from this journey:

What a shame I can’t make the opening session of this Term’s meditation classes in Grimsby tonight!

Update at 4 ‘o’ clock:  Maureen wants ‘Mr Fish’ our Key Worker here to lodge a complaint that she hasn’t any underwear and the toilets are filthy.   Having listened to her diatribe for about half an hour I contacted Single Point of Access so that she could request a visit.  She wouldn’t take the phone to speak to them directly so I held it close enough for them to grasp her reality about ‘the state of play in this hospital’.   I expect a call from ‘Mr Fish’ shortly after he is on duty this morning.  I’m pretty sure he will press ahead with a Best Interest meeting so we can all get round the table to discuss how best to respond to Maureen’s fluctuating presentation.

Further, Update at 6 ‘o’clock: I have just heard a very articulate presentation from Maureen on why she no longer needs to be in this ‘Care Home’.  She makes the point that there is no incentive for them to send her home.  From her perspective, her parents are too intimidated to assert that she is well enough to go home.  She says Care Homes are only interested in making money and will keep her here forever.  From many of the things that she said I thought she had been in touch with Kate Swaffer to confirm her thesis on ‘Prescribed Disengagement’.  I just have a feeling that we might be able to harness Maureen’s fighting spirit to good effect and ‘rementia’ offers a way out of this very dark Tunnel.  Only time will tell if Dr Dan really is the Man!

Dementia: ‘Having A Nice Day’

Mixed Dementia, ,

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Things flared up again yesterday for the second Sunday in succession.  The early part of the day had passed without incident, apart from Maureen having no idea who Girl Sunday was.  On Saturday she had asked the same carer if she was my wife!

Our adventure started in the afternoon when Maureen became concerned about the whereabouts of Granddad.  I suggested that we should go and look for him, as this gave me a welcome opportunity to ease her out of a dressing gown that she had been wearing for 48 hours.  Once she was suitably attired we traced our steps of seven days ago. Although, we didn’t quite make it to a Close where she had made such an impact the week before.

We had a lovely walk, chatting about all sorts of things, for about an hour.  Maureen seemed in a hurry and I hoped that explained her hunched stature as we made our way back home.  Once in the house, Maureen became convinced there were dogs in the rear garden and ran off through the front door.

I trailed her around the streets for some time as she tried to get away from danger.  Once we neared home, I edged her into the car as a safe haven from canine attack. McDonald’s, once again, was a game changer: with a Chocolate McFlurry easing Maureen’s sore mouth and shifting her reality.

When we returned home, Maureen danced and sang to Nat King Cole as I cooked a late evening meal.   She was in great voice and the number of songs she knew was amazing.   Shortly after we had finished eating, Maureen made her way upstairs and eased her tired body into the marital bed.  I joined her a short while later leaving the kitchen looking like a bomb site.  After reclaiming my pillow -she had all three- we both had a good night’s rest.

I’m hoping that things will settle down this week.  We have familiar Girls on duty, apart from the weekend, and Mcdonald’s is only ever a stone throw away!

Just before posting I’ve played an Ace by telling Maureen that her sister will be able to come and stay with us in the newly built Sun Room.  If her brother and his wife follow up I know that we will see a very different Maureen.  She is delighted with the prospect of the family she misses so much being reunited in just a few weeks!