Tag Archives: Distress

Dementia: Not Pulling The Trigger

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After the events of early this morning and Maureen’s general discontent with being ‘baby sat’ by carers I have cancelled tonight’s sit.  I fear that going out tonight might just be a red rag to a bull and give Maureen another opportunity to vent her frustration.  I’m hoping that an evening of TLC might be just what the doctor ordered and lead to a good night’s sleep for both of us.

Although I am missing my Buddhist meditation class tonight all is not lost.  I managed to spend a lovely hour this morning watching some amazing teaching by Dekyong the Spiritual Leader of the New Kadampa Tradition in the UK on YouTube.

 I know that Dekyong and others would see my decision as an act of kindness.   Leaving Maureen in the company of a carer tonight would potentially trigger further distress.

Dementia: A Good Day But A Bad Night

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We had one of the best days we have had for a while yesterday.  I feared the worse when Mary arrived four hours early for her ‘sit’ at 9.30 am.  However the inefficiency of the Care Agency created an opportunity that Maureen rose to and really made a difference to her day.  She accompanied me to my hospital appointment and felt really pleased that she had been with me for my consultation rather than being left sat at home with Mary.  Following the good news that an operation on my shoulder wasn’t imminent the look of joy on  Maureen’s face was palpable.

Two other positive things happened yesterday afternoon.  Firstly, Maureen accompanied  me on a trip to Lidl to stock up on provisions.  Secondly, a  new pump was fitted to our central heating boiler and we had hot water and heating once again.  However, our luck didn’t continue and we were in for a bad night.

I had to switch on the baby alarm  at 10.30 pm as Maureen wanted to stay on the sofa.  I heard her come upstairs and shut her bedroom door a while later.  At 2am she was up and concerned about ‘all the people in the house who kept coming into her bedroom’.  Then she has woken several times wondering if it was time to get up. I made tea at 5 am but that has been another failed attempt to settle her.

I think I might try something a little different today and suggest a day trip of some kind.  I’m hoping a change of scenery will have a beneficial effect for both of us.

Dementia: A Stitch In Time

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Maureen was on the offensive for quite some time after I returned from my Buddhist Meditation Class last night.  The only way I could escape from her abusive vitriol was to go to bed. Just before retiring I plugged in the Baby Monitor that I had bought earlier in the week.  A couple of hours later the monitor crackled into action as I heard Maureen moaning downstairs.  I rushed down and found Maureen lying on the sofa complaining that her throat and mouth were causing her significant discomfort.

My status as a ‘deserter’ soon changed as I became Maureen’s nurse and tea boy.  The hostilities of a couple of hours earlier were forgotten as I attempted to ease her discomfort.  After a while I attempted to persuade her to go upstairs to bed.  Once in the bedroom anxiety surfaced again with ‘they will take my clothes off and bite me’: the old fears about brutality in the bedroom.

I think Maureen felt safe with me beside her in bed.  Those who know her history have warned me to be very careful in case mistaken identity surfaces. We have slept relatively peacefully together with a natural break around 3 am when Maureen wondered if it was time to get up and expressed concern that ‘people were taking her car’.

I need to think a little more on how to respond to the ‘deserter’ accusations. The Baby Monitor saved my bacon as I could get out of the firing line without putting Maureen at risk.  I will read around and chat to one or two people this morning on how I take the heat out of the situation when Mrs Dementia is on the prowl.

Decision time looms for me this afternoon about the tear in my rotator cuff.  I’m hoping Maureen will accompany to my appointment with the Consultant.  Once again our social worker has helped to give Maureen options as a carer will be here for the afternoon shift, just in case she prefers to stay at home:  when you receive confirmation E Mails close to midnight you really appreciate the level of professional support you are receiving

Dementia: Sounding The Alarm

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Maureen’s presentation from 3 am this morning has been rather alarming.  She woke me up saying that someone was in her car yet gain.  I managed to console her with a cup of tea and empathy over her concerns.  I left her downstairs sleeping on the sofa as I went back to bed.

At 6 am I heard the front door open and hot-footed it downstairs.  Something of a lucky escape as I had not removed the key or set the bell on the door.  Maureen looked terrified as she told me she didn’t know where she was.  I offered to make her a cup of tea in an effort to help her get her bearings.  It took half an hour or so before I was sure she knew who I was.

We had an early breakfast together and made idle chat.  When I asked Maureen if she wanted any bread she offered to do the necessary.  Her efforts were a sobering reminder of the incredible decline in her functional capacity.  I had to perform a rescue operation to have anything that resembled a jam sandwich.  Maureen has now gone back to sleep she seems distraught possibly by her awareness of her lack of functional ability.

The bell on the front door will now remain on as an early warning whenever it is opened.  I think it is likely that Maureen has the back door key in her pocket.  Mary today’s carer has just arrived and I need to hot-foot it to Argos to buy a sound and motion alarm to reduce potential risks a little further.  That’s the easy one: I need help with how to address Maureen’s declining functional capacity –  I’m well aware that the more I do for her the less she will be able to do

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: 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: A Day Of Emotional Turmoil

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Yesterday was a very tough day for Maureen.  The early morning proved very difficult for her as she struggled to cope with grief about her daughter.  I didn’t get chance to talk to Chloe before she moved on to her next call but I gather she didn’t have a easy ride here.  On my return from meeting Ed Maureen often looked stunned as she tried to find something to fill her time.  Prior to lunch she wandered around the garden looking lost.

The afternoon and evening didn’t go according to plan as a difficult day progressed.  Maureen was far from her normal self and seemed more unsettled as the day progressed.  She awoke from ‘resting her eyes’ shortly after 9 pm and I guided her towards turning in for the night.  Major upset followed as she prepared for bed with sobbing about ‘wanting to go home’.  Once again she was wondering where ‘the other girls were’ to keep her company in bed.  To reassure her I made it clear that I would be in the ‘boys dorm’ next door.

I’m hoping that rest will lead to positive changes in her presentation tomorrow.  It seems to me a quiet day will be in order with yours truly staying close at hand to provide support when needed.  What an unforgiving, and exhausting, condition dementia is with its relentless demands on this very tired couple.

It looks as though rest has been the cure as we’ve got off to a positive start today: hence this morning’s later posting.  Blogs are not the place to share too much information!

 

Dementia: Opportunity Knocks With The Home Treatment Team

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I drifted off to sleep in the armchair as I watched television last night.  When I awoke Maureen was standing next to my chair looking completely bemused.  She was carrying a pile of my clothes for the homeward journey.  Once again in her mind we didn’t live here and needed to get home.  As I came round I did my best to calm things down and assure her that it would be easier if we stayed here for the night.

An hour later we settled down to watch football on the television and both fell asleep.  This led to a period of abject confusion with Maureen wanting to get back home to her husband.  It took me a while to persuade her that he would understand her staying here for the night and would pick her up in the morning.

Towards midnight I managed to ease her into the ‘girl’s room’.  She was very frightened about others being able to get into her bed.  She was also wondering if Rachel her niece would be joining her in bed later.  I managed to settle her down with reassurance that I would be next door in the ‘boy’s room, well within earshot if she needed me.  An hour or so later she yelled for her mum as one the blankets was falling off her bed.

The doctor from the Home Treatment Team warned us that these episodes would become more frequent as dementia progressed.  She concluded that Maureen’s presentation was manageable at the moment without the need for additional medication.  What is in question is my ability to be able to provide appropriate responses when the going gets tough.  Last night I drew heavily on the strategy that Karen a Mental Health Nurse used on Saturday evening when Maureen was in full flow.

We now have a window of opportunity: a couple of months where we can use the expertise of the Home Treatment Team.  They will provide whatever support we need as we seek the best way forward on the next stage of this unforgiving journey.  I will contact them this morning to suggest that their intervention begins over the weekend with some direct involvement from their personnel.  They have the expertise to support me to develop a life of my own alongside being a Care Partner who knows how to minimise distress when the going gets tough.

 

Dementia: Twelve Hours To Go

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I started thinking about this blog half an hour ago: exactly 12 hours before a Specialist Doctor will be here for a home visit.  The last time she was here she conducted an ACE-111 Test , diagnosed mixed dementia, and discharged Maureen from the Memory Service. Over a year later she is wearing a different hat working for the Home Treatment Team.

We had a lovely day together yesterday despite the  late arrival of the carer.  I have registered my concerns about that matter and they will be resolved within formal processes.  What happened yesterday was symptomatic of general problems within the Care Agency and need to be resolved in the interest of clients.

Yesterday morning when the carer arrived  I popped out to buy some basic requirements.  Maureen seemed to accept my need to go out but my reception when I returned with my haul was far from warm.  It was the familiar ‘why are you leaving me with carers while you go out?’  I have asked the social worker to explore these feelings of desertion with Maureen when she makes a home visit on Thursday.

When we went to bed at 8.30 last night I  got the cold shoulder once again.  We had been having another lovely musical evening singing along to vinyl for a couple of hours.  Once upstairs I set myself up in our bed while Maureen continued with her night-time routine.  When she returned from the bathroom she posed ‘where do the girls sleep’ and went on to make it clear that there needed to be separate sleeping quarters.

I need to return here to my  Admiral Nurse’s assertion about triggers in the behaviour of someone who has dementia.   It is not surprising that Maureen resents me leaving her with carers: her life-line is deserting her.  She also knows that husbands are not always faithful when they are out of sight, from bitter personal experience and our affair.

The separate sleeping arrangements have three possible triggers.  Firstly, it is something she grew up with. Her dad had epilepsy and her mum was frightened of his lack of control if he had a fit in the night, so they slept in separate rooms.   Then she has experienced domestic violence in her first marriage with continual fears about what might happen to her when her husband returned from the pub.  She also heard groups of men in the Independent Care Facility speculating on the prospect of being able to tell confused ladies they were their husbands and join them in bed.  Little wonder that she often wants a bedroom to herself and keeps the door firmly closed

All of the above is speculation and if I have not found the triggers they are there somewhere.  Something is behind significant changes in Maureen’s presentation:  it is reassuring that the Home Treatment Team will not put it all down to the progression of dementia.

As I finish this post I think I’d better see how Maureen is as I haven’t heard a sound from her for ten hours.  I hope I’m able to open her bedroom door without frightening her.  Thank goodness for that she is sleeping peacefully.  I need to sort out that monitor as soon as possible so I can hear what is going on when she is in another room.

Dementia: Superb Support

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We received exceptional support from every quarter yesterday.  In our hour of need local services and family support was of the highest order.  There may also have been other forces on our side as we have both had a peaceful night’s rest.

I could write a book on the events of yesterday.  Blogs are not the place to share such personal detail:  they are the place to praise ‘Care in the Community’ at its’s best.  The powers that be in this area deserve praise for their arrangements to support families in their own homes.  Professional staff from many services provided excellent support throughout the day and evening yesterday.  When we are in calmer waters I will register out thanks for the support they provided.

I am also grateful for the ongoing support and advice we receive via this blog.   It is really helpful that people in a similar position to us are sharing their stories and expertise.  Unfortunately, there will not be time in our lives to visit you all in far flung places around the world but you never know.  I just want you to know that your messages of support make such a difference when the chips are down.  I’m sorry I will not be able to respond to your messages today as I need to focus on securing the home base.

We are not out of the woods just yet.  It is decision time this morning.  I agreed to ‘tough it out’ last night rather than involvement in late night procedures that would have led to Maureen being placed in an Assessment Centre.  My gut feeling is to wait another 24 hours until a Specialist Doctor will make a home visit to discuss the most appropriate way forward.  It always helps when you know and trust the person concerned

Thank you all for your support.   We would not be coping at this challenging time without your superb support.