Tag Archives: Confusion

Dementia: Sneezing Leads To Optimism

Mixed Dementia,

Image result for Elderly Woman Sneezing PictureMaureen woke up very confused this morning. As I lay beside her in bed I watched and listened as she tried to come to terms with her reality.  Her questions to me about ‘drawing a picture and have they told us what to do yet’ left me bemused.  Then something wonderful happened she started sneezing: what a relief she has a cold!

It is possible that a viral infection is behind her current presentation.  Last night the Out of Hours Clinic almost ruled out a UTI and I expect the Lab Report to confirm in a few days.  So I’m hedging my bets on a cold being behind Maureen’s challenging presentation of the last few days.

We received excellent support yesterday from so many quarters as I attempted to deal with the different challenges that Maureen presented throughout the day.   Despite serious pressure on resources, North East Lincs strive to support carers and help them to keep their loved ones at home.  I am often spoiled for choice in who to contact when the going gets tough and support is available 24/7.  It doesn’t get much better than the Chair of our Best Interest Meeting being the Duty Worker when I needed advice from the Memory Service at 9 ‘o’ clock yesterday morning!

Our campaign to have a Care Coordinator for Maureen is really paying dividends.  She requested Occupational Therapy input which is leading to some really positive developments.  Two OT’s will be here on Monday afternoon to give advice on improving the potential for cognitive stimulation for Maureen within our home.

After an incident yesterday afternoon, I have reviewed my approach to Maureen going out by herself.  When she was frog-marched back to me by well-meaning neighbours she let rip in my direction for telling them she was unsafe to be out alone.  Therefore, I will trail her at a distance for a while so that the locals will know I’m on the case and Maureen is in safe hands.

It isn’t often you are grateful that you need to fetch your wife more tissues when she has run out.  This morning I’m delighted to be the Andrex Puppy to keep her well stocked and keep my fingers crossed that when the sneezing stops Mrs Dementia will leave us alone for a while longer!

Dementia: Fear, Hallucinations, and Recriminations

Mixed Dementia,

Image result for Fear Hallucinations recriminations Dementia Picture

The last 12 hours have been the most challenging I have experienced since Maureen’s diagnosis of dementia.  I have tried everything I know and in the end, I have left her to rant.  This morning after a couple of hours sleep I have woken up to someone who has been too frightened to go to the toilet during the night. However, following my guidance to the utility room she has immediately returned to the attack.

I have already alerted Single Point of Access to the need to speak to our Duty Worker this morning.  We will need to rule out a UTI and I will contact our Medical Centre when they open for business.  Unfortunately, the dip test is only a guide and our G P recommends waiting for the Lab Report before I battle with Maureen over further medication.

Things went from bad to worse yesterday. the beauty therapist phoned to cancel her visit as she had double booked and decided to refer us to a colleague.  Maureen was very unhappy that I left her with Girl Thursday as I went out to meet our Key Worker to review our Care Plans under cover of a shopping mission.  As I left my disgruntled wife said that she ‘might not be here on my return’.

Despite following helpful suggestions to address Maureen ‘wanting to go home‘ in the afternoon and evening made little impact.  Nothing shifted her from the position that ‘she didn’t live here and I was keeping her here against her will’.  Towards midnight her fear was palpable as she had ‘nowhere to sleep, no female company and lots of strange men around’.

This morning I’m being accused of all sorts of things and ‘should be ashamed of the games I’m playing’.  There are links to the war and my parents being ashamed of my behaviour.  I’m finding it difficult to keep up with Maureen’s reality and I’m trying to stay out of the firing line.  My feeling is that she is waiting for an opportunity to escape from ‘her prison’ and it is one of those occasions where I will let her run it off.  Such positive risk taking is preferable to creating further distress by locking her in and treating her like a child.  It will be interesting to read the Occupational Therapist’s view on this matter!

To Do List This Morning:

  • Progress checking for UTI
  • Seek advice from Maureen’s Care Coordinator on how to respond to her current presentation.
  • Request our Key worker to put yesterday’s plans on hold and arrange immediate additional support.
  • Relax in the Sauna and Spa at the Leisure Centre.

Footnote: Sincere thanks to those who used my Blog and Twitter to support me during a difficult night.  It’s just Amazing how much Blogging helps when you are dealing with dementia.  I wouldn’t want to risk any further Safeguarding Issues by naming anyone!

Dementia: Opportunity Knocks Today

Mixed Dementia, ,

Image result for opportunity knocks pictures

Our Key Worker is due at two this afternoon to begin the process of reviewing our Support Package.  He is the only professional that Maureen remembers although she has recently reverted to calling him ‘Mr. Fish’ after months of referring to him as ‘Ginger’.  I’m not sure what she will call him after today’s visit but I expect his trademark of treating us with dignity and respect will remain.  As Maureen lacks capacity decisions have already been made about her future care and accommodation at a Best Interest Meeting, almost a month ago.

I find it a little concerning that I have yet to receive the minutes of the BIM.  However, the decision for Maureen to remain at home was unlikely to have surprised any of the attendees.  The meeting also tidied up our relationship with members of the Multi-Disciplinary Team: with the Home Treatment Team and Maureen’s Care Coordinator bowing out of proceedings.  The former I understand the latter a disappointing feature of Vascular Dementia i.e. no treatment and discharge from the Memory Service.

There is little doubt that Maureen’s dementia continues to progress.  What is unclear at the moment is whether infection or a dip is behind her current presentation.  However, there is clarity about one issue our current Support Package is inadequate and continues to put me at risk of Carer Burnout.

Maureen made a comment very early this morning that is a sobering reflection on her situation.: ‘No one really wants me: not even you.  I know you need a life of your own and have to pay people to look after me.  I wish I could go somewhere else to be looked after by people who really cared about me’.  She is in no doubt about those who care about her and those who say they care about her.  What she doesn’t understand is that self-preservation may mean that I may need to defect to the latter camp unless an improved Support Plan is forthcoming. Then she will be looked after by those who are paid to care for her!

Dementia: Thank Goodness For 256256

Mixed Dementia,

I do not know what I would do without our Single Point of Access ( tel:256256).  This morning they have helped me once again.  Shortly after 6 ‘o’clock,  they have advised me that I can drop a sample off at G P Out of Hours to establish if Maureen has a UTI.  The Laboratory may not be accessible to the public on a Bank Holiday but staff will be working and we should get the result in a couple of days.

By the middle of the week, we will know if the infection is behind Maureen’s extreme fluctuations in her presentation that plagued her on Sunday.  There is no let up for her this morning with concerns about a children’s party that is being planned and mad parents dressing their little ones up in ridiculous outfits.  She keeps telling me how frightened she is all of the time.

One significant difference yesterday was her fears that she was becoming a burden to me because of her poor memory.   I sang this one to her this morning to reassure her on that front:

My singing appears to have eased Maureen back to sleep and further rest might ease her troubled mind.  Girl Monday will be here at ten to support the sample securing process which might be a little easier with a recent purchase.  I will then hot foot it down to Grimsby Hospital so that we will know as soon as possible if we are dealing with an infection or further changes in Maureen’s condition.

Maureen has just woken as I’m about to post telling me how ridiculous the party is and how frightened she feels at the moment: her fear is palpable!

Dementia: Listening To The Sound Of The Music

Mixed Dementia, ,

When Homefield House contacted me to say that they were struggling to know how to help Maureen settle down I mentioned how music is so important in our lives.  They clearly followed my advice and Maureen has told me all sorts of stories of how she entertained them during late night sessions.  She has also suggested that we put a show on for them one day as she thinks they might doubt we have Gold Medals for Latin and Ballroom.

Music has continued to be part of our routine since our return home.  We had a restful day yesterday recovering from our ordeal at Grimsby Hospital. Maureen’s G P checked her over in the afternoon and didn’t see anything that was of major concern.  Hopefully,  time will allow a laxative to clear the problem that emerged following her stay at Homefield House.

Once again Respite Care has not worked well for Maureen.  It is fortunate that I feel refreshed from my break as there is now, even more, work to be done here.  Maureen already felt deserted by her family and she now thinks the only friend she has in her life has left her at the mercy of people who have not treated at all well.

This song sums up her mood here at the moment:

As time passes and wounds heal I know Maureen and I will be singing to this one again:

We will eventually find our own way to ensure that I continue to have the energy to be a supportive Care Partner.  The traditional approach to a Respite Break has once again been more trouble than it is worth!

Dementia: ‘Are You Going To Take Me Out?’

Mixed Dementia, ,

I decided to head South rather than North yesterday. This meant forgoing the tranquility of the Buddhist Centre in Pocklington for an opportunity to catch up with family in Coventry. As soon as I set foot in ‘The Sanctuary’ I knew I had made the right decision. Just the smell of the place and seeing engineers at work brought back such happy memories of my days on the shop floor in the car industry. As always I got wise counsel from my brother in law as he took time out from his hydraulics business. The loud bang as my nephew blew out part of a component that was in for repair reminded me of the narrow escapes I’d had in my days as a manual worker.

After checking into the Royal Court Hotel I popped in to see my brother in his Nursing Home. I found him in his favourite chair in the Dining Room. He has been on Continuing Health Care for years which gives you a measure his Alzheimer’s. It took me a while to get him to smile and that was his only meaningful exchange during my visit. He seemed to be preoccupied with his hands: making movements as though her had a hair caught in his fingers. We sat together for over half an hour with only pop music in the background interrupting the silence.

Mum greeted me with her usual ‘have you to come to take me out’ and I did. It was such a lovely day as we travelled to Coombe Park as mum continued with her normal reaparte how many cars were on the road. Her vascular dementia means that conversation is often very limited although she did ask me where my wife was.

We sat for over half an hour and shared our customary ‘99’. She seemed rather tired on our return to her Care Home almost falling asleep as she reclaimed her chair and began to comfort her baby doll. As I was leaving I assured her I would be back soon to take her out again.

As I drove back to my hotel I though about the lack of resident activity in mum’s Care Home and my brother’s Nursing Home. The majority of inmates in both institutions were slumbering in chairs some were on them moving around my brother’s place; all were stationary in mum’s. My thoughts then shifted to Maureen reminding myself of the news that they were ‘not letting her out in the garden because they feared they would not be able to get her back in’.

I managed to switch off a little as I enjoyed the warmth of the Spa and Sauna when I returned to Royal Court. As always I found people to talk to and had an interesting conversation with an IT Engineer and a couple from Latvia. The conversation was also in full flow as I joined my sister and her husband – the owner of ‘The Sanctuary’ – for the second half of the Semi-Final of the FA Cup and a lovely evening meal.

Today I have another busy day with an early morning visit to my eldest daughter and her family. I then hope to find my way to see my younger sister and her son at her home in Warwick. There are other possibilities if time is on my side.

Unfortunately, the news from Homefield House isn’t so good this morning. Maureen had appeared to be settling down but last night she refused to go to bed. If she doesn’t get some rest soon then things will turn from bad to worse. How fortunate that I feel refreshed from this short period of Respite and ready to resume my role as a supportive Care Partner to my dear wife. The issue of how I can continue to have Respite when I need it can be parked until we meet with our Key Worker a week on Tuesday.

 

Dementia: We’re Struggling This Morning

Mixed Dementia, ,

Image result for It's A Struggle Dementia Picture

We’re struggling this morning or as my dear old mum would say ‘we are in the wars’. Maureen is feeling dizzy and is very confused.  She woke at 3 ‘o’ clock concerned that she was late for an appointment.  Two hours later she was wondering if her dad had gone to join her mum in Nottingham.  Early morning confusion is nothing new but she is also feeling generally unwell and dizzy.  If she doesn’t feel any better when she next wakes I will seek medical advice.

I’m far from in good form myself with pain in my legs and back continuing to interfere with my mobility.  Unfortunately,  Maureen and is picking up on my mood without understanding the reasons for my grumpy demeanor.

We will continue to be in the wars here unless I change my battle plan.  Now the Best Interest decision has been taken and Maureen will be staying at home I have to get my act together.  I need a Simple Plan that is based on a realistic appraisal of our situation.  I have to move out of denial and make realistic decisions that are attainable.

My first priority is to get out of pain by carrying out the exercises the physiotherapist gave me over two months ago.  Once the pain subsides I hope to be able to think clearly about how to simplify our lives and stop wasting time on trying to recreate a former lifestyle. Before I undertake any further activities I need to ask a fundamental question: is this a sensible pursuit at this moment in time?

There are two immediate steps I’m going to take on my Simple Plan.  Firstly, to only post on this Blog on Monday, Wednesday and Friday’s for a while.  Secondly, to review my approach to gardening by buying plants rather than attempting to germinate them from seeds.  Hopefully, as my pain subsides I will make real progress on simplifying our lives.

Update: By 8 ‘o’clock Maureen seems fine as we take breakfast looking out of our patio doors onto our back garden.  We have decided to spend more time in this part of the house looking at our colourful cottage garden rather than the road and bungalows that are the prospect from the front of our house.   As my friend Kelsang Dorde (pictured below) from the Buddhist Meditation Centre at Pocklington would say: it’s a no brainer!

Image may contain: 1 person, smiling, glasses, close-up and indoor

Demantia: Natural Distractions

Mixed Dementia,

As Care Partners we are advised to distract and redirect our loved ones whenever they are distressed.  Girl Friday always provides the necessary now as she blooms in her first pregnancy.  Baby talk is thick in the air when she is around to take Maureen’s mind off packing to go home or her latest focus.  Fortunately, my eldest daughter and her family are arriving at noon and that should shift Maureen from her preoccupation about someone falling down the stairs and needing help.

It is difficult to know if the accident on the stairs is a dream or hallucination.  My guess is that this focus has come from the visit by the Occupational Therapist earlier in the week and the impending stair rail.

Music continues to be a regular tool of distraction and if I put on ‘the little girl’ Maureen is transfixed:

I hope to contact Caoimhe and tell her how much we enjoy listening to her singing.  The story of Grace is new to us both as we know little of this period in history: rather strange when you consider our surname!

Dementia: It’s Working

Mixed Dementia,

Image result for It's Working Dementia Picture

I’m now sleeping upstairs at night following the removal of the single bed from our lounge.  Maureen still plays Musical Beds generally spending some of her time in the marital bedroom after an earlier stint on the sofa.  I initially take to the spare room and only join her following invitation.

There was a real bonus yesterday when Maureen told me she ‘had a young man in her bed on Thursday morning’.  I thought it would have been reckless to have mentioned this at the Best Interest Meeting a few hours later as  I didn’t want to risk any further ideas about the need for a Capacity Assessment on this front.

It’s clearly Maureen’s emotional memory that allows her to recall the events of  Thursday morning.  To be called a young man at the age of 71 is rather reassuring!

Dementia: The Tablet Tinderbox

Mixed Dementia, ,

Image result for Dementia Medication Picture

Maureen and I have never been a couple who have taken any medication willingly.  We are great believers in ‘physician heal thyself’ and won’t even take painkillers unless the discomfort becomes unbearable.  Considering Maureen has had a stroke and has suffered from high blood pressures for years the medication she has to take is minimal:  one tablet in the morning and another in the evening.  She has refused to take a statin and her G P and I have given up on this battle.

Despite being told on numerous occasions that she is on her current medication for life Maureen still wages a campaign to be tablet free.  She took up the mantel again last night and refused her early evening medication – questioning if I had the authority to give her tablets.  Four hours later she woke me up from my slumbers worried that she had missed her tablets.  When I offered them to her she refused them once again as I was not a chemist or a Doctor.  Two hours later I heard her crying for her mum via the baby alarm.  When I made it downstairs she was terrified that she had missed her tablets and had put her life at risk.

Earlier in the evening, there had been shenanigans over cleaning her teeth.  Neither of the toothbrushes I presented belonged to her and were being used by others.  This is not an unusual series of events.  It is possible that not cleaning her teeth and finding it unpalatable to use a mouthwash are contributing to having a sore mouth and tongue: a condition that has now become chronic.

This morning a new challenge presented itself –  how to get out of the bath quickly to attend to my distressed wife.  Soaking in an Epson salts the bath is great but it is not easy to get in or our since my hip replacements.  I slipped and cursed at my first attempt: perhaps doing more harm than the good of the bath.  When I eventually arrived at Maureen’s side she was ‘wanting to go home to Nottingham to be with her family’.  She cannot understand ‘why she is being imprisoned here as she has done nothing wrong’. Today is a good day for distraction and redirection as a trip to Freeman Street Market is a fixed feast.

My first scheduled long weekend seems a very long two weeks away at the moment.  My accommodation at the Buddhist Meditation Centre in Pocklington is booked, as it is for the remainder of the year but home-based care for Maureen is not yet in place.   Her challenging presentation shows no sign of letting up and leaves me wondering whether I should have stuck to my guns on Thursday.  My wavering on the need for the immediate respite continues to put me at risk of Carer Burnout and was certainly not in my Best Interest!