Category Archives: Mixed Dementia

Dementia: One Hour To Go

Mixed Dementia,

Image result for Missing My Family Picture

Our chauffeur will be here in an hour but I’m not sure we will make it to see my mum on her 96th birthday. Maureen is very upset and keeps asking me why her family never come to see her?  She has been saying that ‘no one cares about me and no one believes me’.  My words of comfort are falling on deaf ears and she is suggesting that I should go to see my mum by myself.

Maureen understands that my mum and brother are no longer well enough to visit us.  If we make it to Coventry this morning I think it is likely that she will be reluctant to visit others as she says ‘why should I go to see them when they don’t come to see me!’ However, as I know she will enjoy the company of her family I will do my best to persuade her that as we are down that way we may as well call in and see some of those who are finding it difficult to get to Cleethorpes at the moment.

 

Dementia: My Two Top Women

Mixed Dementia,

I know I’m a little late for International Women’s Day but that is deliberate because tomorrow is my mum’s 96th birthday.  This is my musical message to my mum:

Maureen will be accompanying me tomorrow on a trip of over a 100 miles to see the Birthday Girl.  This is my musical message to my dear wife and reflects her approach to living with dementia:

 

Dementia: A Natural Break Beckons

Mixed Dementia, ,

Image result for A Natural Breakfrom Dementia Picture

This morning I have an appointment with my Counsellor – the very man who suggested I should consider blogging.  He helped me to think my way out of depression and see that medication was not the solution for recurring low mood.  Once Maureen was diagnosed with dementia he suggested my mission was to minimise distress.

Maureen didn’t want to go on a little holiday yesterday, rejecting out of hand any ideas about a short break.  No matter how we tried she saw no point in going anywhere as she ‘liked being in her own home’.  I kept in touch with the manager of  Waltham House throughout the day and was reassured by her empathy for my predicament.

The consistent advice from professional staff yesterday was to work within my usual remit of minimising distress.  It soon became obvious that Maureen could see no valid reason for leaving her home and going anywhere else.  No matter how we dressed it up: ‘the lady was not for turning’.  Today brings a new beginning, unfortunately, it is cold and raining heavily so my chances of getting Maureen out of the front door are slim, to say the least!

There is another possibility for a short break for both of us.  My mother is 96 on Thursday and Maureen is keen to join me on a trip to see the Birthday Girl.   Family members are already offering to put us up for a  night or two so we don’t have to travel over 200 miles in one day.  Such a natural break is a phone call away and our chauffeur will be here tomorrow morning.

Our professional support team has always alerted me to the dangers of Burnout: there is a constant message to look after yourself.  Respite care for Maureen is usually seen as the solution when I begin to feel jaded.  I understand that a rolling programme of regular breaks is a sensible arrangement.  I am optimistic that Waltham House is only an assessment away from filling such a gap in our Care Plan.  However, from past experience, I can safely predict that Maureen will be distressed by such arrangements.  To paraphrase her words ‘I’m ready to give up whenever you have tricked me into going in a Care Home’.

It’s fortunate I’m seeing my Counsellor this morning as I’m sure I will emerge from our session with a pragmatic way forward.  It is so helpful that his initial training was as a Mental Health Nurse working in a Dementia Unit.

I hate to think what readers of this Blog ‘who live dementia’ would have thought if I had deliberately ‘tricked Maureen’ into not seeing the Birthday Girl tomorrow.  It could even be that we go today as Maureen never knows what day it is and could well think we will be heading south this morning!

Dementia: Twelve Hours To Go

Mixed Dementia, Uncategorized

Image result for 12 Hours to Go Picture

I’m hoping for the green light at 2 pm: news that following assessment, Waltham House (‘A Caring Home’) feel they can meet Maureen’s needs.  The prospect of a week off duty is keeping me going at a time when it would not be sensible to seek further sleep.

Lots of people stepped up to the plate yesterday to support us through a rather bizarre day.  Maureen’s Time Travelling was exceptional with one predominant feature which is now a cause for considerable concern.  The Clinical Psychologist from the Stroke Team warned me that once she began to confuse me with her ex-husband to be very wary.  It is patently obvious from how she is frequently addressing me that time has now arrived: hell has no fury like a woman scorned!

There was one really bizarre episode yesterday when whilst searching for a missing child  Maureen reverted to sign language.  She has often told me how as a teenager she had lunch with relatives who were unable to speak and developed her own unique way of communicating.  Once again I had to call on the support of neighbours who encouraged a really frightened woman to use her voice again.

Hostilities and abuse have resumed shortly after midnight so I have stayed out of the firing line.   I’m sorting out one or two outstanding tasks and making sure Maureen has an overnight bag to take with her later on this morning.

I’m still not sure how we are going to move Maureen from somewhere she doesn’t belong to a place where she is unlikely to want to be.  It’s reassuring that Girl Tuesday will be on hand to ease Maureen’s transition to Waltham House and give me the respite I so dearly need!

Dementia: In Whose Best Interest?

Mixed Dementia, ,

Image result for Looking After Our Best Interest Picture The Night Rovers came promptly this morning; arriving within minutes of my telephone request for help.  They chatted to Maureen for a while and eventually decided she was blocking meaningful conversation.  In fact, she was at her belligerent best, challenging anything they said that was open to debate.  After a short while, they decided that they were possibly doing more harm than good.

At 11 ‘o’ clock  I’m hoping to progress an opportunity to give us both the respite we urgently need from this exhausting journey.  There have been false starts before so I don’t want to give any more detail or count any chickens before they are hatched.

Girl Monday will be here very soon and I will have some time to try to move things forward.  As Maureen lacks the capacity to make decisions about her care and accommodation I will have to check if my idea is in her Best Interest: I also need to make sure I protect mine!

Dementia: Lost, Bewildered and Frightened

Mixed Dementia,

Image result for Lost Bewildered and Frightened Picture

Maureen seemed totally lost late yesterday evening and I encouraged her to sleep it off. She reappeared from her nap after a short while and was completely lost in her surroundings despite my efforts to ground her.  When it was time to bed down for the night it took a long time to settle her on her choice of the sofa.   She has been awake several times during the night complaining that the people here are trying to frighten her and she can’t wait to get out of this place.  At 5 am she was struggling with a dry mouth and wondering if someone else was needed to help her with medication.

The coaching on medication went relatively well yesterday but it threw up all sorts of anxieties for Maureen about getting it right.  One thing it did address was just for once I was sure her tablets were taken.  There has often been evidence that Maureen has not taken her medication and yesterday I found more tablets in places where they should not have been!

There are a couple of things I’m going to try today in an effort to change Maureen’s presentation.  Firstly, I’m going to ask one of her sons to issue a rallying call for immediate family to schedule regular contact and visits.  Maureen’s continual question about where are my family needs to be addressed.  Secondly, I’m going to try to change her environment by encouraging activities that remove her from the sofa unless she is clearly in need of further rest.  Rachael Wonderlin has posted a video clip on her blog that will help me focus on this mission:

Dementia: Maureen Has Passed Her Physical!

Mixed Dementia

The lab report on Maureen’s urine sample has shown that she does not have a UTI.  Her blood tests are all within normal limits and the swab on her mouth has shown no sign of fungal infection.  Her blood pressure, although slightly more elevated than normal, is not giving the G P any cause for concern.  He has suggested that unless she has any concerns monthly appointments for a general check up will be adequate in future.

Yesterday Maureen told Girl Friday that she is lonely:  she says she understands family members are busy with their own lives but she misses their company.  She generally shows a reluctance to travel to see them as she feels that they should be coming to see her.  I have no intention of persuading her to endure long journeys in her current condition; even though I know she is really missing one particular granddaughter at the moment. You would only have to see her waving with tears in her eyes as she watches Maeve on YouTube to understand what I mean:

Early this morning Maureen has woken up worrying about her medication as she says she’wants to get better’. I’m hoping that this is an opportunity for me to help her regain a semblance of confidence and independence through taking responsibility for her medication. I will keep you posted on how this goes!

Dementia: ‘I Want My Life Back’

Mixed Dementia

Image result for I Want My Life Back Picture

There appears to be a consensus on the need to cut us some slack and allow us to catch up with loved one’s next week.  I may be wrong and ‘Ginger’, as Maureen calls our Key Worker. will soon tell me this morning. He will be here at 10 ‘o’clock this morning; that will please Maureen as she is always keen he keeps a watchful eye on how we are doing.

There is an immediate point of concern in my opinion.   As Maureen put it on retiring last night ‘she hasn’t got a life of her own anymore, as she is being told what to do all the time’.  Maureen frequently says she ‘wants her life back’.  I fully understand why my very intelligent wife hates the loss of her independence.  That is one of the reasons I have been requesting a gathering of the Multi-Disciplinary Team.  Why should she have to wait for her concerns to be addressed and continue being treated in her words ‘as if she is stupid’.  My campaign for an immediate reflection on how she is being treated will continue.

You will be pleased to be reassured my cyber friend Kate Swaffer there remains no room for ‘Prescribed Disengagement‘ here!

Image result for Kate Swaffer picture

Dementia: Please Cut Us Some Slack!

Mixed Dementia

Image result for Cut Us Some Slack Picture

Today marks the third anniversary of Maureen’s stroke: the culmination of a catalogue of errors.  It was three days after presenting at Accident and Emergency at Grimsby Hospital before she was sent to the Stroke Unit at Scunthorpe. On arrival, we were asked ‘why have they sent her here?  It’s too late for us to do anything’.  The window for thrombolysis had long been shut and our journey was rather pointless.  When I look back this was the final straw in missed opportunities where few had been interested in listening to my concerns about Maureen’s faltering memory.

Maureen now has a diagnosis of moderate to severe dementia.  She has recently been confronted with the nature of her condition: despite choosing to be in denial for three years.  I’m not sure anything has been gained by trying to bring her out of denial – the process has certainly scared the living daylights out of her, as has preparation for the Best Interest Meeting concerning her future care and accommodation.

Sometimes Maureen’s reality is I’m seeking to have her taken in a Care Home because I want all of her possessions for myself.  My reassurances fall on deaf ears when the going gets tough. Therefore, I am requesting that we are left alone until Monday 13th of March and the procession of professional staff to our home is temporarily suspended.  The one exception being our Key Worker who Maureen calls ‘Ginger’ as she likes him to pop in to see how things are going.  We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

We need to see if my strategy to distract and redirect (outlined below) will give Maureen the strength to cope with the ramifications of the BIM. My concern is that if we don’t cut her some slack she will carry out her threat to ‘give up’ and that is not in anyone’s  best interests!

Monday the 6th of March is my brother’s birthday.  He has Alzheimer’s and is on Continuing Health Care in a Nursing Home.  Three days later it is my mother’s birthday. She has vascular dementia and is in a Care Home.  Next week needs to be set aside so that our chauffeur can take us to see our loved ones.  Dementia is such a significant factor in our lives and a compassionate approach is needed at this moment in time, rather than trying to bounce us into the procedures of the Mental Capacity Act!

Footnote: This post is being forwarded to all professional staff who are providing support to us on this journey.  I will also copy to Maureen’s G P as I seek his permission to give her prescribed medication covertly.  The ongoing battle to persuade her to take tablets is draining!

.

Dementia: Action Man Returns

Mixed Dementia, Uncategorized,

Image result for action man picturesMaureen often asks me: ‘what’s the plan Action Man?’  So I took on the mantel yesterday in an attempt to move things in a positive direction.

Once it was confirmed that Maureen had a UTI  I  encouraged the Practice Nurse to outline a formula for recovery:

  • Antibiotics to be taken for a week.
  • Eight glasses of water to be drunk daily.
  • A shower or a bath to be taken three times a week

This formula complemented our early morning pledge:

  • To sleep together in the marital bed at night.

Girl Monday morning also gave me some much-needed coaching:

  • To stop giving Maureen options as she can no longer make choices.

The support we received from professional staff yesterday was of a really high standard.  Early in the morning, a Duty Officer from Social Services contacted me as our Key Worker was not working.  Within a short period of time, she managed to secure and arrange two-hour afternoon carer sits for the remainder of the week.  The added bonus being that this additional support would be with known faces.  Throughout the day other professional staff weighed in with support and advice.

It will take a couple of days before Maureen’s medication starts to kick in.  With luck, things will then move in a positive direction – providing ‘Action Man’ remains well enough to deliver the goods!