Category Archives: General

Dementia: Maureen Was Missing: Paul Is Exhausted

General

Just as we were going to bed last night at 10 pm Adult Social Care rang to say that they understood ‘I wasn’t managing’.  They had received the police report of events of early evening when Maureen had gone missing.   The police eventually found her after an extensive search of the local area.  This was another narrow escape with me supporting ‘Maureen’s right to roam’.

The police were exceptional in the support they provided yesterday; from the time I reported Maureen missing until she was found.  It hasn’t taken them long to weigh up the situation here: I am not managing – the demands of Maureen’s presentation are exhausting and unsustainable.  That is why I took  drastic action, a week ago, of handing in my notice as Maureen’s Care Partner.

Maureen going missing wasn’t the only significant event yesterday.  The visit from a Support Worker from the Home Treatment Team spooked Maureen.  She felt it was part of the conspiracy to prove that she is mad and lock her away.  I suspect that Maureen was running away yesterday rather than being out for one of her usual walks.

I’m on my knees this morning after another night’s interrupted sleep with Maureen calling out at 4 am.  Our situation needs immediate attention – goodness knows what I would be like with another three weeks of this.

Yesterday I made an error of judgement in not accompanying Maureen on her walk.  I had just woken up after a short sleep and was simply too tired to go with her: when you are exhausted you make poor decisions!

Dementia: Dilemma at 3 am

General

Maureen woke me at 3 am this morning as she stood at the top of the stairs wondering ‘where everybody was and if she was late for school’.  She accepted my explanation that it wasn’t a school day and we were the only people in the house.  I  thought it unwise to join her in bed as she had gone to bed last night reprimanding me because I was failing in my duties as a member of staff of this Care Home.  In fact she said she ‘wished she could get paid for doing as little as I did each day’.

I could hear her moving around again at 4.30 am and chanced my arm by opening her bedroom door.  She was searching for a cardigan because she was cold.  After hunting round for a while I eventually found the missing item safely stowed in the cupboard beneath the stairs.   As I put out her light she thanked me for my efforts but I have no idea who she thought I was as I left her to go back to sleep.

I have not been back to sleep since the 3 am call this morning as my thinking hat was firmly on.  Following the advice of Paul McKenna I got up and did something boring.  After tidying up the kitchen from my efforts the night before I began to hunt for missing gear.  Maureen is always hiding sharp knives as she fears intruders would use them once they had broken in. We bought three new ones the other day but they are now in a place of safety.  They didn’t surface but I managed to find a chopping knife that has been hidden for a while:  it is now safely hidden in my hidey hole.  I then moved onto the bookcase.

Maureen spends part of most days shifting around books, pamphlets and photos in certain areas of the bookcase.  It took me half an hour to put some of her proudest possessions in a place of safety, put photographs back in their frames, retrieve socks and other clothing items from her stash.  Her mantra following dementia is ‘anything in any place’: so different to the well organised woman who used to be my wife.

I’ve just put in the first load of washing of the day, with a second waiting patiently for the machine to finish its cycle.  Maureen loves to put washing on the line so that is one activity for her this morning as we await the arrival of a Support Worker from the Home Treatment Team at 11 am.  This is the start of a process of the HTT seeing Maureen’s presentation first hand. They will witness her increased level of confusion, fluctuating emotional state and declining functional ability: a very different picture to that gained from conversations with Maureen where she holds her own with a host of confabulations based on her life prior to dementia.

Footnote:  As I’m about to post at 7 am Maureen is moving around in her bedroom again.  She is cold as she is lying on top of the quilt with only a blanket around her.  I help her find additional bedding and she says ‘what kind of people would take bedding off people who are ill’.  She looks bewildered as she pulls bedding around her and shuts her eyes.  I hope that sleep brings her the one thing that seems absent from her waking hours: peace.

Dementia: A Day Of Emotional Turmoil

General, Uncategorized, ,

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: SOS All Hands On The Deck

General, Uncategorized

I am hoping that music can come to our rescue again tonight: hence the deck.  Maureen has not had a good day.  Seeing Chloe again has thrown her – two weeks is a long time with dementia.  Chloe report noted high levels of confusion and Maureen’s refusal to shower.  She also saw what I experienced yesterday; Maureen making 5 cups of coffee rather than one.

Music did the trick this morning as Maureen struggled to deal with the passing of her daughter.  I’m hoping that a couple of hours singing and having fun with old favourites will help ground her tonight.  We’ve already had one dance in the kitchen and Maureen let me lead: that’s always a good sign!   I can hear her singing along to |Willie and Carole as I type:

I’d best get downstairs and give her my answer!

Postscript:  Seeing that Maureen was worn out as I dished up tea at 6.30pm  I turned the music off.  She was exhausted and just about managed to stay awake to eat her meal.  I resisted an altercation over taking her blood thinner; accepting that Chloe had given it to her this morning – even though I knew she hadn’t.  Maureen isn’t at all happy about taking this medication and often argues that she has already taken it or hides it.  Our chemist has warned me about the need to take medication consistently but I never argue the toss with Maureen over medication: I accept her reality .

I would guess that Maureen is out for the count now.  It is likely that I will struggle to prise her off the sofa in a couple of hours.  She will see me as that wicked man who is trying to overdose her on tablets again.  How dreadful this condition is for us all but at least I can walk away from it for a few minute: a luxury my dear wife will never have.

 

 

Dementia: Meditation Not Medication Version 2

General,

Meditation design elements vector graphics 01

I don’t need any persuasion of the benefits of meditation.  Some years ago I began to show an interest in Buddhism, and began attending local classes in meditation.  I have had several teachers in my sporadic attendance, they have all  helped me to  grasp the simplicity of Buddhism.

When Jendrik, my current teacher, heard that I was unable to attend classes, because of Maureen’s condition, he popped round to see me.  Ed one of the longest members of the Grimsby Group has also met up for a chat on several occasions: we are getting together again this morning.

The Buddhist message, from both of my dear friends, has been to use this challenging time as an opportunity to address ‘self-cherishing’ and give ‘unconditional love’.  It therefore comes as no surprise to me that Meditation is now being seen as an important component of any strategy to deal with the impact of dementia.

Maureen has always been a little sceptical of Buddhism.  Therefore, I need to tread very carefully if meditation is to become part of both of our lives.  However, I’m optimistic that with patience she will see that meditation will become as beneficial to our lives as music. 

Any reader of this blog would know by now that we are generally reluctant to see medication as a panacea for health issues.  We believe in taking responsibility for our well-being with a healthy diet and exercise.

When we are unwell we look into our symptoms and try to find a solution without troubling our G P.  If natural cures don’t work we seek an appointment and take professional advice on the best way forward.  Even then we might try to sort things out ourselves once our ‘medicine man’ has made a diagnosis and prescribed his solution.

My Admiral Nurse has set me thinking about changes in Maureen’s presentation.  Her point that triggers are behind Maureen’s presentation has resonance with how I see the world.  In short I would put Maureen’s behaviour down to cause and effect: she is frightened about being abandoned and is searching for a life boat as she fears the ship is about to go down.

Working with the Home Treatment Team feels like with are with kindred spirits as we  seek calmer waters: they do not rely on the medical model .  They are aware of research that urges caution with an approach that relies on antidepressants and antipsychotic medication.  There is a strong body of opinion that these types of medication should not be used where dementia is a factor.  Thank goodness we are in that camp and not  fighting a battle to resist the introduction of antidepressants.

On Wednesday the Mental Health Nurse suggested that Maureen needed some help with regaining her confidence.  That has been my opinion for some time and  I do my best on that front day after day.  However, it is possible that a different approach or style could reap further dividends.  How lovely it would be to see Maureen ‘come out’ from behind the sofa and regain the vitality that has gone missing since stroke: with us all singing from the same hymn sheet that is now a distinct possibility.

Chloe our regular carer returns from her holiday today.  Maureen can’t wait to see ‘her hairdresser’ this morning: eagerly anticipating a makeover.  When I come home after seeing Ed at lunch-time I fully expect to see a transformation; with Maureen sitting chatting to Chloe rather than ‘Mrs Dementia’ being in situ.

If all goes to plan a Support Worker from the Home Treatment Team will be here on Sunday morning.  With luck she will persuade Maureen to go on a much needed clothes shopping expedition.  My late afternoon conversation with the HTT yesterday helped me to understand how significant their intervention can become.  How refreshing to have skilled experienced guides to help us find our way on this hazardous journey.

Dementia: Exceptional Support From Professional Staff

General

It is approaching 10 am and responses from NHS and Local Authority staff this morning have been exceptional.  I have spoken to the Home Treatment Team, our social worker and our G P this morning along with E Mail contact with my Admiral Nurse.  You could not fault the speed and quality of response to our current situation.  We are so fortunate that professional staff from all quarters have answered our call in out hour of need

Dementia: Opportunity Knocks With The Home Treatment Team

General,

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: ‘Fings Aint Wot They Used T’Be’

General

I think this piece from  Dementia Alliance International about a forthcoming Webinar with Teepa Snow sums up life when dementia is in the home:

‘Living life with dementia inside is an ever-changing experience. Sometimes challenging, sometimes boring, sometimes overwhelming, and sometimes just fine. But it is not like it used to be, no matter how much we might wish it was so. One difficulty is that others may not experience you and your perceptions the same way you do. It is often easier for me to blame the change on you and your dementia than look in the mirror and notice how much of what is happening might be due to how I am being different or changing. With dementia, each of us is not always sure about what each person thinks, remembers, hears, sees, feels, but it is easy to react rather than respond. In this session, I will provide six puzzle pieces to help each of us consider the gifts of curiosity, caution, and courage to help when we are trying to work and live with one another and we have dementia in the house!

About Teepa: Teepa is an occupational therapist working as a dementia care and dementia education specialist. She has over 33 years of clinical experience in the field of geriatrics and dementia care, as well as having provided care to family members with dementing illnesses. Currently, she has an independent practice as well as a clinical appointments with Duke University’s School of Nursing & UNC-CH School of Medicine. She provides interactive and creative educational and practical hands-on training sessions to organizations and providers throughout the US & Canada. She has been actively involved in teaching and clinical research projects throughout her practice career’.

I couldn’t resist a word from Max on this one:

Dementia: Twelve Hours To Go

General,

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: An Admiral Nurse Who’s ‘Been Around A Bit’

General

I met with Mel my Admiral Nurse and a member of the Home Treatment Team yesterday morning.  After the meeting I said how helpful is was that Mel used to work within the HTT and she said ‘I’ve been around a bit’.  Her experience has been vital in helping us to get back within the system: rather than remaining discharged because of Maureen’s diagnosis of mixed dementia.

One salient point from our meeting was when Mel said ‘there is a trigger for everything it’s not just a question of Maureen having dementia’.  I find her comments reassuring and confirmation of the approach of the Home Treatment Team.  Therefore, I felt comfortable making clear my expectations of the HTT.

I outlined my concerns about reaching for the prescription pad, highlighting the known dangers of antipsychotic medication .  I placed my cards firmly on the table seeking an appraisal of Maureen’s presentation and the development of a strategy that would lead to us finding a way through this challenging period in our lives.

When the HTT had a brief involvement with us in the past I was pleased to hear that they have a biopsychosocial approach to dementia.  We are so lucky that we will be working with like- minded folk as we travel on this challenging journey.

Just in case you didn’t know Admiral Nurses work for Dementia U K and they are currently campaigning for funding to recruit more.  I would not have coped without the advice and support I have received from Admiral Nurses in this area.