Tag Archives: Confusion

Dementia: I’m Exhausted From Being A Care Partner

General, ,

Yesterday turned out to be a very challenging day and I’m now physically, and emotionally, exhausted.  Being up from 3 am is not the best start to anyone’s day.  Then at 1pm Maureen went on the attack following me leaving her with our carer, while I went out in ‘her car’.  Later in the afternoon there were lots of tears about not knowing where she was, and the things she can no longer do.  I spent a large part of the afternoon assuring Maureen ‘that they couldn’t split us up, and I would be by her side until death us do part’.  Towards the end of the evening all hell was let loose, as Maureen turned on me.Image result for I'm Exhausted Graphic

No-one could sustain the amount of effort that is now needed to give Maureen the support she needs at the moment. The time I spend just trying to keep her settled means that I hardly have a life of my own.  Just joining in with the hunts to find missing (‘stolen’) gear takes up an extraordinary amount of time.  If I’m not on the ball she can wander off looking for me, even when I’m another room.  Her emotional needs are exceptional, and can be totally consuming.

At around 9.30 pm yesterday evening Maureen decided that I wasn’t her husband: he had gone out. She thought he might have been upstairs; so she went to look for him (me). Maureen became so distraught, with a strange man in the house (me) that I asked Kate our neighbour to come round to try to reassure her.  Unfortunately, this didn’t make any difference.

Shortly after Kate left, Maureen became very hostile; making all sorts of accusations.  She was completely taken with my ‘game plan’ of ‘taking over the house, her car and all our belongings’.  It was after 11 pm before Maureen went to bed, and I took refuge in the spare room.  Just before she turned in she said, with anger: ‘you don’t care about me at all, you are just trying to take everything but my children won’t let that happen’.  I have never seen her quite like this before I don’t think she realised who was the audience for her outbursts.

At 4am this morning I could here her moaning in the marital bedroom.    I entered the room cautiously, and she said ‘she had been talking to the man’.  I settled her with; a drink,  a tablet for her sore mouth, and joined her in bed.  It didn’t take longer to ‘nurse’ her back to sleep.  She is well away now while I’m typing, and trying to collect my thoughts.

Maureen has awoken a couple of times in the last hour.  She is wanting to tell me about the events of last night concerning the strange man, who said he was her husband.  The man she is talking about is that Paul (me) who worked with her in Coventry.  She is very frightened and is seeking continual reassurance but wanting to tell me things in case she forgets them.  When I look back I made many mistakes last night as I tried to ground her: exhausted Care Partners all struggle to make the right interventions!

Fortunately, Sue our social worker will be here at 11 am this morning for a routine call.  Sue’s assessment is that Maureen has capacity, and if she doesn’t want to be left with carers we have no right to force such arrangements upon her.  Unfortunately, all Sue has to go on is what she sees, and hears, in her occasional visit. It would be difficult for anyone to see much beyond the ‘hostess mode’ that Maureen perfects when professionals call.  Therefore, her functional capacity and ‘out of character’ behaviour are kept well- hidden from professional staff.

The immediate priority is to help Maureen settle down, and re-establish domestic bliss.  I think it is an opportune moment to seek a Case Conference to consider Maureen’s presentation, and my responses as a Care Partner.  In the interim period there are a number of measures that need to be in the pipeline:

  1. To check for UTI or other type of infection.
  2. ‘Maureen’s car’ to remain on the drive unless she is going out in it.
  3. To review carer sits: nature and frequency
  4. To encourage Maureen to take more exercise.
  5. To try to entice Maureen into new activities: particularly in the evening.
  6. To organise carer respite, possibly overnight, ASAP.
  7. To reduce pain in my limbs, and left shoulder.

 

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Dementia: Spooked By Prospect of Family Visiting

General,

I may have thrown a further spanner in the works this morning by

mentioning that Maureen’ son and grandson are on the way.  Maureen’s initial reaction has been concern that  she :’won’t know what to talk to them about’.

Perhaps I should have stuck to  my original thinking and let it all be a surprise when they turned up.  It may take more than a bit of singing along to YouTube to ease things along until their arrival in a couple of hours

Dementia: Singing For Sanity

General

Our early morning thoughts and conversations continue to fascinate me.  I’m lying awake thinking about my days machining cylinder blocks, and Maureen is remembering holidays with her parents in the Isle of Man.  Our conversation drifts in the direction of holidays and we discuss various venues.

A couple of hours later after further sleep Maureen is crying saying: ‘I don’t want to be here’.  She then says she wants to see her mum and dad so I hold her tight and she drifts back into sleep.  A little later I suggest a day out possible visiting Nottingham and Maureen prevaricates.

Now I am on the keyboard and I sneeze alerting Maureen to where I am.  She sees me and says: ‘I wondered where you were I thought you had left town -you don’t come and talk to me any more’.

There’s only one solution to all of this: let the music play.  Very soon YouTube will be blasting out some of Maureen’s favourites, and another day will begin on this ‘interesting journey’.  Singing always seems to have a positive impact on both of us, and this article from the Mayo Clinic  explains why.

Dementia: ‘This Is Not Sustainable’

General,

Sometimes it takes a stark comment from someone else to help you take a reality check on a situation I was recounting to Maureen’s youngest son that I was following her down the road after she had just told me: ‘I’m going to go out and look for Paul’, when he commented: ‘this is not sustainable’.  He makes a fair point: I need additional support to cope with Maureen’s current presentation.

Three, three hour carer sits is no longer adequate as Maureen’s condition continues to take a turn for the worse.  We have no idea if this a temporary dip or further decline.  The positive thing is that Sue, our social worker recognises the need for flexibility in our Support Plan. It hasn’t helped this week that Christmas Day deprived us of carer attendance, and New Year’s Day is likely to do the same.

As today is a Bank Holiday I have to tough it out until Tuesday. Thankfully I have some help today.  There is so much going on at the moment that it is difficult to know what to do for the best.  One thing that appears to be happening is that Maureen’s confusion is now frightening  her.  It’s no longer just a question of her not knowing who I am: she is now frightened by her poor memory.

Yesterday evening she broke down as she told me of her fears of strange men in the house, who are continually trying to get into bed with her.  She said these fears arose when she was in hospital, when she heard groups of men discussing their plans to get into the beds of confused women.   Her recollection was of men suggesting that they could tell medicated females they were their husbands’, and be able to take advantage of their confused states.  A little later on she admitted that she was often unsure which Paul I was out of the ‘teacher’, and her ‘husband’.

Early this morning Maureen has woken up distraught, once again, that she is late for school .   I tried to settle her with a drink, and gathered following an enquiry about the state of her sore mouth that she didn’t see me as her ‘husband’.  I therefore, retired to the spare room.  At 2 am Maureen is up and about tidying up in the marital bedroom: it looks like another long day.  The good thing is she is taking the benefits of being bilingual seriously, and singing a song in French about a cuckoo in the forest.

I plan to be on the phone on Tuesday morning to both my Admiral Nurse, and our social worker to discuss Maureen’s presentation.  Listening to Willie Nelson  helps, and lots of other strategies keep us ticking along but Maureen’s behaviour continues to be extremely challenging.  Confusion about day and night has been around for a while but early morning wakening is now creating unhealthy sleep patterns.  More is needed on several fronts to minimise Maureen’s distress, and I need additional support reduce the chances of Care Partner burnout.  This is  an unforgiving journey and we are fortunate that we now being supported by a social worker who is a dementia specialist.

Dementia: Early Morning Routine

General

It’s 5.45 am and we have been up for a couple of hours.  Unusually, Maureen beat me too it this morning and was downstairs while I was still asleep.  I found her in the lounge sorting out the zip on her cardigan again: something she had been doing for half an hour on the previous evening.  After another ten minutes or so she put the cardigan on and zipped it up.  I am feeling a little out of my depth here, and will have to see where this new pursuit leads.

We had a short dance in the lounge yesterday evening, and I returned to this theme earlier on with YouTube.  Watching dancing on the T V held Maureen’s interest for a while, and we chatted about creating a dance floor in the lounge.

Using the Lap Top is causing Maureen to be distressed so I have to shut down.  I am in new territory here as Maureen’s presentation is changing radically.  More later – perhaps.!!!!!

Dementia: Willie Nelson To The Rescue

General,

Maureen slept for most of Christmas day.  I woke her for meals, and we watched the last episode of Dinner Ladies.  I managed to keep callers at bay, apart from a brief telephone conversation from Maureen’s youngest son.

Just as we were going to sleep we talked briefly about Maureen being uncertain about who I was.  Once in bed her reticence towards me was explicit.  I made it clear it didn’t matter, and it was something that would pass.  Then this morning it came to me: we will dance our way back to closeness.  Maureen will eventually remember me as her dance partner – after all we have Gold Medals for Latin and Ballroom.

As I came round in the morning I thought: I’ve got it – the Rumba one of our favourites.  Then I thought hang on a minute Willie Nelson will do it for us: his version of ‘No Mas Amor’ is just the ticket!

Click here  and think of us as we Rumba our way back to being husband and wife – in the kitchen of course!

 

Dementia: Plagued By Fear Of Men

General

I would welcome suggestions on how to handle my latest dilemma:

Early this morning Maureen sought assurances that I had been in bed with her.  She knew a man had been in her bed but didn’t know who he was.  She said she was afraid to move in case he attacked her.

An hour or two later she appeared downstairs scared out of her wits.  She had a vision of a man in the loft about to open the trap door, and join her in bed.  Despite my reassurances she spent some time seeking explanations for what she had seen; searching the house to see where the man had gone. Eventually, she gave up her search saying: ‘I must be going mad’.  Those who know Maureen know where this fear of men originates: it would not be kind to remind her of ghosts from the past.  The initial advice I have had is that it is too for Maureen to have therapy about her fear of men.  However,  I intend to consult professional staff once again on this matter.

My problem is if I join her for an early night I am often up an about early in the morning, leaving Maureen to sleep on.  When I delay going to bed my entrance into the bedroom sparks fear, and often leads to screaming.  It also seems that if she wakes in the night she is unsure who is beside her in bed, and worried about his intentions.

Perhaps this is a passing phase and all I need to do is tough it out.   Just to be on the safe side I am open to suggestions that might reduce the potential for distress, as we continue on this hazardous journey.

 

 

Dementia: Confusion and Grief

General

 

Maureen became very concerned last night that she didn’t remember who I was.  She was reluctant to go to bed because she thought she was waiting for her husband to come home.  Just as I was tucking her up for the night she asked me what was wrong with her?  She was worried that she might need to go back to hospital as, once again, she had lost her memory.   A short while afterwards I heard her crying in bed about all the people who had died: her son, daughter, mother and dad.

I think spending the afternoon with Maeve reminded Maureen how much she missed Denise, her daughter.  As she sobbed she mentioned that she wanted to move on.   I think the time has arrived for me to once agai discuss this matter with professional staff.

My strategy for the remainder of the week is to have a quiet time following a busy few days.  Therefore, I will let Christmas pass very quietly, and minimise any external contact.  The land line will remain off unless Maureen shows concern about lack of contact from her family.

 

 

 

Dementia: In The Dog House Again

General

I began writing this blog at 10.30 last night to start looking back on my away day in Coventry.  It had been a tiring day and I haven’t really pleased  my mum or my wife.

My journey began at 7.10am yesterday morning, and I returned home at 9.15pm.  It’s a round trip of 230 miles from Cleethorpes to Coventry and I travelled by travelled by coach, and local bus.  We made good time, and I was sitting beside mum in her Care Home by 11.40 am.

Her repetitive questioning about: ‘had I come in the car’ was a constant theme of the hour we spent together.  I soon gathered that she was angling to be taken out for a ride in the surrounding countryside.  My sisters report that mum often switches off, and goes to sleep when a short drive is not on the cards.

My idea of using music went well, and we sang along to some Festive tunes from my phone.  Mum tapped her feet and really enjoyed our little sing along.  She was reluctant to move from ‘her chair’ and that caused upset for one resident that a ‘man was in the house’.

As short as my visit was it gave mum a break from watching random TV that provides a meaningless backdrop to her life.  Staff seemed to be busy meeting the individual needs of residents, and gazing at the screen seemed to be the option for mum: little surprise she was dozing when I arrived.

I had a lovely lunch with several family members at a local pub.  Service was slow and that meant I didn’t manage to get to see my brother as his Nursing Home is the other side of the city.

I was not well received on my return home.  Maureen was confused by the events of the day, and had no recollection that her son has been here.  The cold shoulder was applied in a blatant fashion, and Maureen was reluctant to go to bed insisting on sleeping on the sofa.  I managed to persuade her upstairs at 11.30 pm but she didn’t want me in the same bed and I took my place in the Dog House – the spare bedroom.  I managed to join her in the marital bed  early in the morning when I could hear her moving next door, and I feigned a return from a visit to the bathroom.

It is fully understandable that I am in the Dog House.  My mum loves to go for a ride in the car: I didn’t take her.  Maureen had been left with strangers all day: I had deserted her and her normal routines had been disrupted.  What else can I expect when dementia means that my mum and wife now focus exclusively on their own needs?

 

 

 

 

 

 

 

 

 

Dementia: Tormented by Christmas Past and Fear of Christmas Future

General,

One of the things I’m continually trying to do is grasp what it is like for Maureen living with dementia.  I feel the: anger, frustration, fear, and anguish on a daily basis.  Maureen still says: ‘she lost her memory once’, and she has probably forgotten her diagnosis of vascular dementia.  Therefore, she doesn’t talk  about her fears and concerns.  So I try to understand what it might be like for her by reading accounts of those who write about their condition, and  Norrms put it like this:

‘TORMENTED
BY
CHRISTMAS PAST
AND FEAR OF
CHRISTMAS FUTURE

This time of year is such a confusing time of year, not just for myself, living with dementia, but also for others and their carer`s and loved ones. I try to look back and try to remember what’s happened this year, as I start to look into the mirror and take a cold hard look at myself, and this awful illness, the two are now linked forever unfortunately. I see staring back, a different man from 12 months ago, ( I think, it’s at this point I look at old photo`s ) Is it only me that can see that blankness creeping into my eyes, that disassociation draining from my pupils, or is that just my Illness? Is it ME looking back at ME? Or is it Lewy Body’s, smirking behind my smile, laughing at me, tormenting me, taunting me of what’s yet to come?

Thoughts come into my mind, happy thoughts, of things achieved, things completed and of things yet to come, until that is, Lewy Body`s walks into the same room in my mind and reminds me of the struggle it has been, the sleepless nights, The hallucinations, The Night terrors and the Horrors of What Lewy Body`s imposes on my family and I on a daily Basis.

It’s at this point the tears start to fall and the feeling of hopelessness envelopes my whole body and mind. As they subside and I wipe away the tears, thoughts turn to next year, well it’s only a couple of weeks away. I always like to say, one minute I was watching Space 1999 and the next I was transported into the year 2015, with not that much knowledge of what happened in-between!! And so to next year……………….

2016 WOW!! Just saying that sounds so very strange to me, dates, times and months don’t come that easy to me these days, but as we all know, time and tide waits for no man / woman, unfortunately, neither does Dementia. If I am very honest, I am dreading the 31st March!! Not the 19th as that’s WRAD World Rocks against dementia day, but what about after that? What about when I retire and try to fill my days with other things except the disease that has ruled my life for the last eight years and will end my life if no cure is found?? How do I fill that gap? Most worrying?

Yes of course I am looking forward to spending my time with my “Angel” Elaine, and yes I am so looking forward to spending more time fishing and gardening, with my kids and going on holiday, but at the end of the day, Lewy Body`s will always be there, chip chip chipping away at my family and I. So as you can see, the New Year can be such a confusing time for people like me and their families. So many family members out there must think exactly the same, have the same fears, the same worries, and so many out there with this disease must also think this, even if they cannot speak this.

All that comes to mind at the moment is
DAY BY DAY is all we can hope for, hope this helps

Norrms Mc Namara Diagnosed with dementia 8 years ago aged 50′