Category Archives: General

Dementia: Looking Back Looking Ahead (Week 14)

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There is little doubt that I have found recent changes in Maureen’s presentation extremely challenging.  On occasions exhaustion has led me to make decisions that have been questionable in the cold light of day.  Thankfully my requests for increases in my Support Package have been heeded and I start this week with an air of optimism.

It is important to acknowledge the generosity of the Local Authority and its mantra to ‘look after their carers’.  I am well aware that fellow carers around the country would give their right arm for the level of support that is available to carers in North East Lincolnshire.  I can almost hear them saying ‘what else does he want?’  My answer is quite simple: the energy to continue to be a supportive Care Partner and time to have some life of my own.

None of us can predict how Maureen’s presentation will pan out in the short or long term. What I now have in place is six three hour carer sits and opportunities for day trips to see family.  I have also had positive discussion with our social worker about overnight stays so that I can have mini breaks from my caring duties.

I have to tread carefully to make the best of the new Care Plan.  If I rush things and panic  Maureen then the additional support on offer will be counterproductive. There were considerable repercussions when I went to see my daughter in London and the last thing we need is a repeat of those events.  However, if I lose any more contact with my own family and become totally isolated resentment is likely to creep in.  Therefore the Local Authority’s generosity has to be matched with resolve on my behalf: they have created windows of opportunity it’s up to me to make my way through them!

Opportunity knocks today when our social worker visits this morning.  As Sue often says ‘we need to work Maureen’: recognition of the person rather than deferring to the condition.  It will be interesting to hear Maureen’s view of her needs and how she wants to maintain her independence within th.

 

Dementia: Arrival Of Granddaughter Leads To Transformation

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Maureen really struggled this morning as none of her clothes felt comfortable and she went back to bed totally distraught.  She didn’t get up until Maeve arrived shortly after 1 pm.  It’s such a shame that her granddaughter isn’t able to visit more often because her presence has such a positive impact on her Nana.

Maureen was in hostess mode for the 3 hours that Tom and Maeve were here. She is now sleeping off her busy afternoon, possibly for the rest of the day.

Dementia: A Sobering Experience

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Anyone who saw Maureen in action yesterday would have found it a sobering experience:

  • She struggled to find her way home after two walks and required frequent redirection.
  • She had no recollection that we followed her steps of last Sunday by venturing onto Thorpe Park Holiday Camp.
  • She seemed blindly confident on crossing roads.
  • She was unable to work out how to answer the telephone or return the handset after I had made a call on her behalf .
  • Her attempts to wash up pots and pans involved abandoning proceedings with  two bowls of hot water on the go.
  • She struggled for ages attempting to zip up a cardigan on her lap: wearing sun glasses at the time may not have helped!
  • She declined my invitation to spend time reading a newspaper.
  • She now defers to me if she needs a hot drink: saying she is too busy with other activities.
  • I notice that Maureen had been tidying up the bookcases again and had replaced a framed photograph of her granddaughter with a booklet dealing with shoulder injuries.
  • She slept on the sofa several times during the day – I’m never sure if this is because she is tired or bored.
  • She awoke around 9.30 pm after a fairly long doze on the sofa.  She looked dazed and became very concerned that she hadn’t got any clothes to go out in.  After a lengthy search in her wardrobes she lay on the bed in tears complaining ‘she used to be so smart when she was at work’.  She continued to complain that ‘clothes had gone missing since we moved here’.  I  encouraged her toput her head on a pillow rather lying across the bed.
  • She awoke at 1.15 am and I managed to encourage her to go back to bed.  I joined her in bed a couple of hours later after she had ‘got lost’ when she went downstairs.

Saturday was certainly a sobering experience: Maureen’s focus at 6 am on Sunday morning was an enlightening one.  Once again she shared her perspective on the constant questioning and observations of professionals.  She feels that they are trying to establish that she is mentally ill.  As I have form in that direction; having been Sectioned for my last episode, I drew upon personal experience to allay her concerns.  I’m not sure my efforts will have made any real difference to Maureen’s constant thought that ‘they are trying to prove that I’m mad’.  I also suggested a strategy to help Maureen relearn what day, month and year  it is: if we crack this it will be one less reason for Maureen feeling ‘stupid’ because of her short term memory deficit.

 There will be a different dynamic this afternoon when family members arrive for lunch.  It will be interesting to see how the presence of Tom and Maeve impact upon Maureen’s presentation today.

NB: I’m hoping this blog/diary will supplement the assessment process and help build up a comprehensive picture of Maureen’s presentation.  It might help to reduce the need for questioning and observations by professional staff that have such a worrying impact on Maureen.

Having dementia is bad enough but when an asessment process is leading you to feel stupid or that they are trying to prove that you are mad: something needs to change!

Dementia: Keeping A Diary

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I continue to be impressed by the approach the Home Treatment Team are taking to support us.  Their Doctor and a Mental Health Nurse were here for an hour and a half yesterday.  This gave them an opportunity to see Maureen’s presentation and talk to me at some length.  They have requested that I keep a record of events so that any patterns in Maureen’s behaviour can be explored.  I’m hoping my Blog will become the diary that the HTT have requested me to keep.  Hopefully it will provide some answers to the triggers that lead to Maureen occasionally behaving ‘out of character’.

I am drafting this post just after 11 pm at night after rather a long catch-up sleep on my behalf.  Maureen remains ‘spark-out’ on the sofa.  One thing is for sure if I wake her now she won’t know where she is: so I have to leave her to come round in her own time.  My only dilemma is deciding whether to join her in the lounge or go back to bed.  I think I will hedge my bets for a while by staying awake and seeing if she stirs.

Maureen awoke around 11.30 pm and we chatted for a couple of hours.  I tried to encourage her to accompany me to bed but she was reluctant to do so.  At 1.30 am I retired to bed and left Maureen downstairs lying down on the sofa.

I awoke around 3.30 am and checked that Maureen was still safely covered up on the sofa.  A couple of hours later I heard movement downstairs and found her tidying up in the dining room.  She had brushed her hair had her handbag on her arm and shoes on her feet.  I made her a cup of tea as she was too busy to make one for herself.  It took me a while to explain to her that it was cold because the central heating was scheduled to come on in an hour or two.

Maureen seems in good spirits this morning and appears to have got over the distress following the visit of the HTT yesterday.  She will have forgotten the sterling battle she waged to resist having medication available to calm her down if she gets distressed. During this exploration she was clear thinking, rational and logical.  One of the many things Maureen and I have in common is we are well aware of the shortcomings of medications as the solution to changes in our environment.   However, as Maureen was deemed to lack capacity to understand the risks associated with her out of character behaviour a best interest decision was taken and a prescription for a low dose lorazepam will be delivered this morning.  This medication is only to be used when needed with Maureen’s consent.

As always Maureen felt that professionals were here to catch her out on one front or another and wished they would leave her alone. She feels she is being treated unfavourably because she has lost her memory.  I hope Kate Swaffer will forgive me if I suggest Maureen is experiencing aspects of ‘Prescribed Disengagement’ dispensed with a degree of compassion.

It would be churlish of me to complain about having to fit in with Maureen’s sleeping pattern: she has had to cope with my early morning wakening for many years.  The sofa is clearly a safe place for her to rest but I don’t sleep easily when we are ‘out of it’ on different floors of the house.  I’m hoping to find a suitable monitor so I am alerted as soon as she roaming around and I’m asleep in bed upstairs.

Readers of this Blog continue to comment on my approach to being Maureen’s Care Partner.  Professional staff may prefer to make comment or pass on suggestions by E Mail to pautrevcol@gmail.com

Dementia:Fighting A Losing Battle

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Two incidents yesterday led me to realise what a resolute adversary dementia is becoming.  It was one of those days when I began to think I was fighting a losing battle.

Maureen loves putting washing on the line; it remains one of her jobs.  Yesterday she put dirty washing out along with freshly cleaned clothes.

Her efforts at making tea brought tears to my eyes.  Natalie the Mental Health Nurse had to assist otherwise she would never have got a drink.  Maureen had poured hot water into a ceramic storage jar with ten tea bags in.  My drink(s) were left in the kitchen a cup of tea and a cup of mint tea.

The washing issue was a one off but Maureen no longer manages the line of clothes as she has done for years.  She has to be prompted to put washing on the line and fetch it in when it is dry.  Tea making has been a problem for weeks with supervision and prompting essential to keep her out of harm’s way.

We are hoping that Doctor Kokton will be able to provide an explanation for the alarming decline that has taken place in the last few weeks.

Dementia: A Small Token Of Gratitude

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When Paul Martin my Counsellor suggested blogging I didn’t really know what he was on about.  Nitram a colleague from Talking Point taught me, from a distance, how to dip my feet in the water.  Very soon I found it was just what I needed: a place to share our journey and seek support.

We now have contacts around the world who support us on our journey.  Unfortunately there is not time in my life to meet them all personally and show my appreciation for their support and guidance.  It would be wrong to single out any one in particular but I have to mention Jennifer Tucker for encouraging me to show Gratitude: her Blog is inspiring.

There are several people I need to show gratitude to for yesterday:

Mel, my Admiral Nurse for hearing my cry for help and moving things forward.

‘Hot Liz’: at The Gardens for seeking out Mel whenever I called yesterday.

Natalie: a Mental Health Nurse for witnessing Maureen’s functional capacity and arranging a visit from Dr Kokton today.

Sue: our social worker for arranging additional carer sits.

Staff at Hica: for attempting to arrange additional carer sits.

Liz, at Lloyds’ Pharmacy: for programming the GPS Tracker.

Kate Swaffer: for her wisdom and ongoing support.

Family Members: for their supportive texts and Emails.

Maureen: for her love, patience and courage.

Dekyong: and all my Buddhist friends for their spiritual guidance.

Anyone else: who I may have overlooked who continue to support us on this challenging journey.

Today will be another tough day for Maureen.  Chloe will work her magic in the morning whilst I’m in Grimsby trying to move things forward.  A siesta after lunch will be followed by further assessment by the Home Treatment Team.   It’s not surprising that Maureen ‘wants to go home’ to that beautiful place where dementia didn’t call the shots.

Maureen’s gratitude will be evident on Sunday when her own Songbird will be here.  How she needs some magic from Maeve at the moment.  Tom her dad has been very thoughtful to respond so positively to last night’s request for a visit.  I think I can safely say that Natalie was blown away when we called up Maeve on YouTube for her yesterday!

Dementia: Looking Good

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Marelma is here again today and the signs are very positive.  I always stay around when we have a new carer, to carry out informal induction in the ‘Collins way’.  My hunch is that they will get on like a house on fire but I still need to update her on developments since her last visit.

I’ve just pulled the girls apart in the lounge but hear that Maureen has been drawn to Marelma like a magnet in the kitchen.  It’s all looking good and it seems as if we are back to strength with three carers on the scene.  Just to be on the safe side I will pop out shortly and leave them to it.

When I reflect I was made for my role as a Care Partner.  My professional work involved talent spotting: helping adults to realise their potential.  My academic background is in Continuing Education and the Management of Change.   So I meet the Person Specification for my role as a Care Partner.

My final paid employment as a Supply Teacher gave me experiences that equip me for working without resources and backup.  My previous professional role in adult education involved working with scarce resources; so I often had to beg, steal or borrow.  There is an old saying ‘adult educators never retire they just go white on top of the head’.   My only regret now is that dementia is calling the shot and we are both running for cover from a foe that never takes time off.

Now it’s getting even better following a phone from social sevices to confirm that extra support has been authorisesd.  All sits will become three hours and a Wednesday evening sit will mean that I will be able to return to Buddhist Meditation classes.  I have tailored back a visit to see family in Coventry in a weeks time as a day trip is pragmatic at this moment in time.

I think there is general reconition that a worn out carer is making matters more challenging for Maureen.  It is reassuring that the noises I have been making to my Admiral Nurse this morning have resulted in action.  Thanks Mel I owe you another one: that bar of chocolate is going to arrive one of these days.

Now I must see is someone can set up that GPS Tracker for me, so the ‘Happy Wanderer’can preserve her independence and I can have peace of mind.  I’m too tired to be sure I wont mess it up:  Tesco here I come.

 Change of plan: Tracker being sorted by Liz at local Lloyds Pharmacy as they are nearer than Tesco and it is one of their products.

 

Dementia: Care In The Community

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The Home Treatment Team pulled out all the stops yesterday to help manage the ongoing crisis that was developing here.  We were in touch throughout the day and a Mental Health Nurse called at our home for a couple of hours in the morning.

I continue to be impressed by the Home Treatment Team in all sorts of ways.  It always helps when you are being supported by professionals who have a cohesive working model that reflects your own thinking.  They also practice what they preach and soon weighed up that Home Treatment was the best option for us.  That means that they will assess Maureen’s presentation in the home whilst seeking to prevent carer burnout by yours truly.

I am also grateful to Gary, a Duty Social Worker,  who worked tirelessly yeaterday to provide back up to the Home Treatment Team.  He had contingency arrangements in place in case Maureen needed to go into an Assessment Centre.  In addition he put a further carer sit in place and tried to organise more at very short notice.  Sue our Key Worker will be back today, she doesn’t work on Wednesday’s but the arrangements in place for her day off are first class.

We are not out of the woods in any way yet.  Maureen got into a real state yesterday afternoon feeling that the conspiracy to take away her liberty was escalating.  She tried to do another ‘runner’ and broke down later on.  Thankfully telephone advice from the HTT to ‘give her space to see if she would settle’ worked.

I need to talk to the HTT and Social Services this morning to avoid interventions by their staff provoking Maureen into reactions that are unhelpful to her well-being.  I’m sure they will understand the need for staff continuity rather than fresh faces at our door adding to Maureen’s confusion and distress.

I nearly forgot we’ve just had a great night’s sleep, in bed together: what a relief!

 

Dementia: Waiting For Daybreak

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We are in crisis Maureen doesn’t know who I am and wants to be taken home.

She is refusing to go to bed while I’m in the house.

She will need to be assessed by the Home Treatment Team in the morning.

It is so sad that I haven’t been listened to and it has come to this.

I am totally exhausted after another sleepless night.

The crisis support during the night has been helpful.

The staff we need now will not be on duty until 8 am.

Dementia:Capacity and Best Interest

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Maureen spent most of yesterday in bed and made no mention of the events of Police bringing her home on the previous evening.  She was reluctant to get up in the morning when Chloe her Carer was here.  It was late afternoon before she made her way downstairs.  I used music to lift her mood prior to our evening meal when she had a pleasant hour singing along to Eva Cassidy and Rod Stewart.

Maureen took to the sofa around 8pm and was extremely unpleasant when I woke her at bed time.  At one stage I thought it would be another night that she would spend downstairs.  It was well after midnight before the banging around in the Girls Dorm ceased and the lights went out.

At 3 am I heard Maureen moving around in the Girls Dorm.  After a short while she burst into  into the Boys Dorm saying that ‘someone had been in her wardrobe moving her things around’.   I tried to find helpful things to say but received hostility and recriminations in return.  Apparently I’m falling short in my duties sleeping morning afternoon and night – if only I could.  Maureen’s rant lasted around 15 minutes until all went quiet: I wish I could drop off as easily after such outburst.  If I am to survive this I cannot afford to absorb any aspect of Maureen’s current presentation: Mrs Dementia is not a nice person and her antics are best soon forgotten.

At 4 am Maureen was up again calling fo her dad.  She then made her way downstairs  calling for Paul.  I joined her downstairs made her a cup of tea and lay beside her in bed.

Maureen woke again at 6 am and held forth about being kept a prisoner here.  She said she hasn’t done anything wrong and they have no right to keep us here.  Once again she wanted to go home to our own place.  This familiar routine continued for some time and she reassured me that it isn’t my fault and she is just sharing her thoughts out loud.

I had several telephone conversations with various people yesterday about the demands of being Maureen’s Care Partner.  It is not my intention to attempt to summarise what was said here.  In common with professional staff I am concerned about capacity and best interest: mine.

Following discussions with our social worker I need to progress plans for visiting family and periods of respite..  Such plans will have to be carefully managed or the benefits of respite for me will be diminished by bitter recriminations from Maureen; as happened after my day trip to see my daughter in London in February.

Only time will tell if it is possible to have the capacity to be Maureen’s Care Partner, protect my well-being and develop a life of my own.

It would have been my dad’s birthday today.   He would be very concerned about his daughter in law’s current presentation.   He would be pleased to hear that Mum has recovered from a spell of the novo virus that has plagued her Residential Home.  He would also be pleased to hear that John, his eldest, is back in his Nursing Home after a night in Coventry University Hospital following a fall.  I know he would have ‘managed’ watching three people he loved dearly have their lives complicated by dementia: that was the Old Man.  We all miss his wisdom dearly as Finbar puts into words so poignantly:

 

 

My dad always encouraged his children up to ‘tell the truth and shame the devil’.  The simple truth is I am ‘managing’ despite the views of the Police passed on to me by Adult Social Care.  The fact is no-one could sustain the level of input that is needed to address Maureen’s current presentation.  I will be contacting our social worker this morning to request improvements in our Support Package before I keel over with exhaustion or something far more significant: it’s time for a focus on my capacity and best interest.

Just before 7 am I  sang along to ‘The Old Man’ and when I got to ‘he made me what I am’ Maureen said ‘I made my children what they are but where are they now: too busy to visit their mum!’