Tag Archives: Confusion

Dementia: In Safe Hands

General,

It’s reassuring that Maureen will be with carers that she knows when I’m away tomorrow. 

Once again I need to praise Sue our social worker who is  aware of Maureen’s vulnerable state at the moment, and has requested that we have familiar faces on the scene.  This has meant that Chloe’s idea about writing a Care Plan for her colleagues is not needed tomorrow.

I chatted to Chloe on Friday about the guidance she would give her colleagues and it went something like this:

  • Introduce yourself as a friend of Chloe’s
  • Say you have just popped in to give a helping hand
  • Never say you are here so Paul can go out
  • Give Maureen plenty of space to do her own thing
  • Never try to force Maureen to do anything
  • Do not try to make Maureen have a shower or wash her hair
  • Take into account that Maureen has a 50% peripheral vision loss
  • Go out for a walk with Maureen if she is keen to take exercise
  • Understand that Maureen is still grieving for her daughter who died 3 years ago
  • Understand that Maureen may confuse Paul with her previous husband Eddie

I’m sure Chloe will add to her Handy Hints to colleagues.  It also seems likely that the idea will catch on and the Agency will adopt it as standard practice.  How fortunate we are to have such a committed carer as Chloe in our midst.

 

Dementia:’Houston We Have A Problem’

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There is no doubt it: ‘we do have a problem at the moment’, and the worrying thing is it may be more than a temporary one. It’s becoming abundantly clear that the times when Maureen is unclear who I am are becoming more frequent.  Unfortunately, that problem is going to take on an even greater magnitude tomorrow when I am on a day trip to Coventry. Therefore I need to hurriedly put one or two things in place to attempt to reduce the potential for further distress.

The real problem arrives when Maureen thinks I am her previous husband.  So I am going to concentrate today on putting even more things around that are ours, and remind her of the ‘good old days’.  Perhaps looking at our wedding photos, and sorting out one or two albums of old haunts might help.  I can also talk about and put on music that reminds her of the happy times we have spent together.  However, I’m not quite sure what I can do about her son’s visit while I’m away.

In many ways it is unfortunate that Ian is coming tomorrow.  Maureen often becomes more confused than ever after his visits: unsure who her husband is.  After my holiday in Portugal last year she became convinced that his dad was returning, rather than me.  As he stood with her at the railway station she looked a pitiful sight, almost unrecognisable, until she saw it was me coming off the platform.  On another occasion she summoned the police because she said ‘there was a stranger in the house’ – it was me!

The Clinical Psychologist from the Stroke Team warned me to be very careful once Maureen began to confuse me with her previous husband.  Being aware of the abusive nature of Maureen’s previous marriage she urged me to be very cautious about my behaviour.  Therefore, I’m now being very careful about when I make physical contact with Maureen.  How sad that in the present circumstances I have to check who Maureen thinks I am before can give her reassuring hug:  if I get it wrong all I will do is cause further upset.

Dementia: ‘Please Don’t Leave Me Alone’

General, ,

I have just returned from a short trip to the shops to find Maureen very distressed.  When I found her in the bedroom she said: ‘I don’t know what I’m doing’.  She went on to tell me that she became very frightened as she: ‘felt useless that she couldn’t do anything to help, and I was doing all this running around’.  I have posted below an extract from an article by  Bob DeMarco, that appeared in the Alzheimer’s Reading Room, to remind me why I can’t leave Maureen alone at the moment:

‘The simple facts are that at a certain point in the development of dementia, a person really cannot be left alone.

The easiest way to understand this is that dementia patients do not “cope” well when left alone.

You could ask yourself this question. If the person who is left alone is angry when you return, how do you think they might have been feeling while you were gone?

Do they feel,

Confused? Afraid? Abandoned?

Alzheimer’s patients are very fragile. As the disease develops they don’t have any real concept of time. To a person who is deeply forgetful 30 minutes might seem like an entire day.

For example, I might go to the store for 30 minutes and leave Dotty alone at home. She would be angry when I returned.

Later that night she might say to my sister Joanne, I don’t know where he goes, he goes out all day long. She said this even though I was only gone for 30 minutes I and I went to the store.

Clearly she had no understanding or any memory of how long I was gone, and why I was gone.

Dotty might also say, I don’t know what he is up to. This was code for Dotty thinking or believing I was going to put her in a “home”.

Like any feelings or emotions in any of us, if you let these type of thoughts build up over time it is likely that you are going to “lose” the dementia patient.

When I say “lose” what I really mean is lose their trust.

If they don’t trust, or if they stop trusting you, you are really in for some very miserable times. If an Alzheimer’s patient does not trust you they will become angry, irritable, challenging, and hard to deal with.

When this happens you both suffer the burden.

The person who is deeply forget becomes confused, then angry, and then they “act out”. You on the other hand get left with an upset stomach (agita), and a very sore heart.

That is the way it felt to me.

Some caregivers complain that they can’t get a minutes peace. That the person who is deeply forgetful follows them around, or constantly calls out for them when they cannot see them. Dotty did this all the time.

Let’s reverse field. Instead of “venting” and complaining about the behavior of a person that is deeply forgetful, let’s instead ask ourselves, why do they follow us around, why do they call out when they cannot see us?

The simplest answer to this question is because we are their lifeline.

We are the person they trust (maybe the only person). We are the person that keeps them attached to the real world.

Like it or not, you become the one person in the world that a person who is deeply forgetful can rely on and trust. You are the only person that can keep them from becoming confused, angry, and just downright scared.

After a certain point in time a person who is deeply forgetful gets scared when left alone. This in turns leads to all kinds of negative behaviors’.

Dementia: Woken By Maureen Screaming In The Night Again

General,

It’s 4 am in the morning and I have decided that blogging may help me to sort a few things out.

There is a difference today as I know I haven’t woken myself up to blog.  Once again I have been woken up by Maureen screaming: yelling out in fear that there is a stranger around.  This time she was yelling to her dad that someone was walking down the passage.  She didn’t see it as a dream as she asked me if I had heard their footsteps.  It seems likely that there is far more to her current presentation than the infection that surfaced last week

In the last week or so Maureen’s levels of confusion have concerned those who see her on a regular basis.  Yesterday, Chloe one of our regular carers commented on how confused Maureen was at the moment.  It’s no longer just a question of Maureen asking Chloe the same questions time after time. There is far more to concern us than that.  Yesterday, Maureen became completely confused on my whereabouts on several occasions.  Unfortunately, her present levels of confusion are not being eased by the antibiotics, and no further treatment is required for her original infection.

I managed to have brief chat with Yvonna our chemist yesterday, and there are a number of possible explanations for Maureen’s increased level of confusion.  It is possible it is evidence of further decline caused by dementia.  On the other hand it could be explained by viral, or bacterial infections, or viruses.  I’m hoping that it is something within the realms of the latter explanation.  Only time will tell and a good diet along with the right amount of exercise and rest, are just what the doctor or chemist ordered.

I hope to catch up on some sleep later in the day.   Unless I can get more sleep there is little hope of my leg or shoulder pain being solved.  There is a price to be paid for concentrating on Maureen’s needs, and dementia may well mean that they are insatiable.  It is time to tough it out and prioritise my own needs.  If I don’t carer burn out is on the horizon, and that won’t help either of us.

My trip to Coventry on Monday offers some respite when I have a day to myself: albeit one with demands of its own; a tiring journey with an emotionally draining agenda.   Seeing your mum with vascular dementia and brother with Alzheimer’s is hardly a picnic.  However, the downward coach trip should offer some valuable thinking time: I need to have some sort of plan to break out of this Catch 22 situation I’m now in.  In a nutshell:  I can’t carry on like this!

 

Dementia: A Sky Blue Break

General

Saturday went well with antibiotics being taken without too much difficulty.  I gave Maureen breakfast in bed, while playing  YouTube in the background.  I continued with the musical input once she was downstairs and we watched excerpts from a couple of musicals.

We made lunch together: with Maureen peeling and chopping the ingredients for vegetable soup.  I slipped in beside her on the clearing up duties, and eased her away from the sink.  Her efforts at washing up were pretty fruitless but drying up didn’t pose any problems.

Maureen took to the sofa for a couple of hours after lunch, and on waking made for bed. She remained for the rest of the day and night.  I have taken her drinks up periodically, and kept her on schedule with medication.

These frequent trips up, and down, stairs take me back 40 years to the time I was giving ‘Bromptons Cocktail’, to Annette my 29 year old wife. Whenever, I feel jaded I count my blessings that Maureen is expected to live well beyond ‘the roses coming into bloom’: the prognosis at that time for Annette.  I am hoping that infection is behind Maureen’s lack of energy, and confusion, rather than a permanent dip in her presentation: only time will tell.

This afternoon I have some special time out.  Our social worker has kindly arranged additional care so  I can go to a local Club to watch Coventry City play Sheffield United on Sky Sports.  I hope those Blue Boys don’t let me down: I need something to give me a lift at the moment!

 

Dementia: Infection Making Matters Worse

General

It all makes sense now: why Maureen has been so tired and confused over the last few days – infection is dragging her down.  A course of antibiotics should do the trick, and things should improve fairly quickly.  It’s another one of those occasions where there is no going without pain.  The pain being the difficulty in getting Maureen to take an additional four tablets a day.

Maureen is confused about how she has got an infection.  Her questions have come thick and fast: seeking an explanation about what has caused the infection; when she has to take the antibiotics, and for how long?   Unfortunately, the infection is adding to her general confusion and all of this is difficult for her to absorb and understand.

At first Maureen was in despair over the news of the infection, and I encouraged her to try and sleep it off.  She awoke in the evening looking a little more sprightly, and I let the music play.  With Art Garfunkel to accompany her she gave a good rendition of a couple of numbers.  So then I went for the jugular and put on South Pacific and with her soup spoon in hand she once again: ‘Washed That Man Right Out of Her Hair’ – Get the Picture?

It is likely to be a challenging  few days until the antibiotics kick.  I need to be patient and yet again draw on the wisdom of Teepa Snow.  These  5 Tips for Care Partners are a useful reminder of where I need to focus my attention in the next few days:teepasnow

1) Step back first

Before you do anything, take stock of what’s going on in the environment, observe the person and their behaviour, be mindful of the moment in time – forget about what happened an hour ago or yesterday. The reality of a person with dementia can be extraordinarily dynamic. Ask yourself what is going on for them now, at this particular point in time, before you say or do anything. (See also: 1) the “B” in BANGS; and 2)  the “A” in BANGS)

2) Respond don’t react

It’s easy to get caught up in reacting to other people and in the process behave in ways that are unproductive. With the help of a counsellor as well as by teaching myself through experience, I learned to look at my own reactions to “problematic” responsive behaviours which I discovered I often provoked myself! That was an eye opener I can tell you.

Once I identified that I was part of the problem, I was able to respond in much more helpful ways and thus become part of the solution. (See also: the “A” in BANGS)

3) Have a plan

Yes, we need to fill the day with activities, meals, quiet time, etc. But, and it’s a BIG but, it’s critical to be flexible. The plan we have may not fit with the changing minute-to-minute wants, needs and desires of the person with dementia. Plans are good guidelines. They fail when we try to stick to them at all costs. Better to go with the flow. (See also: the “G” in BANGS)

4) Know about control

Remember you cannot control anyone else’s behaviour, especially someone with dementia whose ability to use reason and logic may be significantly reduced. The only person’s behaviour you can control is your own. Teach yourself to behave in ways that reduce anxiety for yourself and the person with dementia. (See also: the “A” in BANGS)

5) Stop doing what doesn’t work’

Teepa Snow expands on her tips in this short video clip.

 

 

Dementia:Musical Friday

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As I messed up earlier with a 5 am posting I have decided on a little more today.  I have already used a little music therapy to relax myself this morning.  Someone Like You has been booming out from my Tablet and Smart T V: I am a recent convert to that fabulous woman.

I am going to see if music can help to ground Maureen today.  What I have in mind is to put on those tunes that she used to sing along to 50 years ago whilst doing her housework.  There is no doubt that this is usually a mood lifter.  If things go well I will put on South Pacific and she will sing with gusto: ‘I’m going to wash that man right out of my hair’.  That always makes her feel good: those who know her will ‘get the picture’.

My final plan in this musical journey is to put on some Festive Music.  I want to see if Christmas can be moved into her mind set.  I have a sneaking feeling that there are some very happy memories there that we might just tap into.  In all of this I will proceed with caution because as my cyber friend Kate Swaffer  says; ‘gently, genty catchee monkey’.  That must be the Aussie in you Kate: Maureen always says ‘slowly’!

Dementia: TGIF

General

What a day Thursday turned out to be.  Talk about after the Lord Mayor’s Show of Wednesday : yesterday certainly took the biscuit. It was a day of extreme contrasts where an emapathetic husband was called for in the morning, and cast adrift as a stranger, or ghost from the past, at bedtime.

Maureen’s early morning concerns were once again about whether her daughter had died.  She couldn’t sort out if her thoughts were a nightmare or reality.  I listened, held her tight, and reassured her that she wasn’t going mad.  I explained that  stroke had damaged her memory of the sad events surrounding Denise’s death. Maureen also wanted to go over the events of her baby son dying over 50 years ago.  Once again I heard a harrowing tale of how she presented her lifeless child to her mother, and asked if he was dead?

It is always difficult to know how to deal with this unresolved grief: particularly as my own approach to premature death has not been psychologically healthy.  When my first wife, Annette, died at the age of 29 I tried to carry on without having a period of sadness: something I paid for later.

Later in the day I took advice from my Admiral Nurse and may seek guidance from Cruse, to check out if there is more that can be done to help Maureen with her unresolved grief.  However, I may not have done so bad as Maureen thanked me and said: ‘now she knew she could move on’ – if only!

The day was realtively uneventful with Maureen spending a lot of time resting.  When I went to dispose of unused tablets Yvonna our local chemist raised concern about the number of blood thinners that had not been taken.  On her advice I contacted the G P and he has encouraged me to battle on trying to persuade Maureen to take Rivaroxaban.

I decided to join Maureen in our bedroom shortly after nine but  she left me in no doubt that I was banished to the spare room once gain.  With a smile on her face she told me that: ‘we didn’t sleep together’.  She then proceeded to bang doors and move furniture about.  This went on for quite some time along with complaints that there were: ‘no locks on the door and there should be’.

At 1.30 am I awoke to hear Maureen on the landing searching for socks.  I joined her in the search and over half an hour later I eased into bed beside her as I could see she was extremely confused.  Her search included rummaging through her drawers considering all sorts of clothing to add to what she had already got on this went on for half an hour or so.

After a journey to the bathroom around 3.30 am Maureen told me that: we needed : ‘do something about the animals in the bed’.   She went on to enquire: ‘what they had said about our problem:  probably a reference to the people who are in charge of ‘this place’.

Around 4 am I decided to call it a day and got up to tidy things up a little.  Despite an eventful night this is longer than I have usually managed to stay in bed for the last few days.  I clearly have to do something about my sleep pattern as I can’t carry on like this!

There’s only one thing I would say about today: TGIF.  Chloe, today’s carer, will be here at ten and I have a physio appointment at eleven.  This gives me an acceptable reason to go out, and have experiences where dementia does not impact on opportunities to converse.  The only problem is that Oliver, my physio, is a Manchester United supporter and he isn’t going to be in the best of spirits at the moment.   However at least he will know who I am!

Postscipt: Never blog early in the morning you might just post at an unearthly hour and I have!

Dementia: A Beautiful Moment

General

With so much going on here I nearly forgot a beautiful moment on Sunday evening.  We were about to go out for a short walk when Maureen spotted a neighbour across the road in her drive.  Maureen knew that Pat had been in hospital, and went across to see how she was.  Pat asked us into her place to continue the conversation that was taking place in the cold.

Once inside Pat’s bungalow we continued chatting, and Maureen offered to help Pat in a number of ways.  Knowing that Pat lived alone she said if ever she needed anything not to hesitate to ask.  Grasping that Pat was unsteady on her feet and had been advised that she should not go out by herself she said that Pat could walk with us whenever she fancied a stroll.

I had bumped into one of Pat’s relatives earlier in the week and sought an update on Pat’s condition.  In common with Maureen she has ‘memory issues’ and has been discouraged from going out by herself.  Pat looked puzzled when Maureen asked if she had enjoyed Christmas.  When we were leaving she had to redirect Maureen out of her bungalow, several times, before she could find her way out.  I can’t remember if she is aware that Maureen has dementia but she looked puzzled by Maureen’s behaviour: particularly her tendency to ask the same question several times.

What stands out for me in all this is the beautiful woman that dementia has not stolen completely from us.  Beneath her fear and confusion Maureen’s compassion still glows in the dark.  I miss Maureen’s warmth and compassion as it  not always on offer to that ‘strange man‘  who is often on duty in her ‘Care Home’.

 

 

Dementia: It’s The Environment Stupid!

General,

They are some relatively simple things that have been overlooked in the hurricane that strikes once the consequences of  diagnosis hit home .  Particularly when it is vascular dementia and you are discharged from the Memory Service and  left to seek care in the community.

Then it gets worse when you are at the receiving end of poor treatment from social services.  Our Care Plan has not been reviewed for over a year. No Carers’ assessment has been undertaken. Respite has been hard to come by in that time.  Things have only started to move in a positive direction since I made a real fuss about our shoddy treatment.  This has led to our social worker  being replaced with a Dementai Specialist.  I am now optimistic that we can put some of the dreadful events of the last year behind us and move forward.

It is easy when you are a Care Partner to sit back and blame others when the going gets rought.  I only have myself to blame for the events of yesterday morning.  Maureen joined me at the keyboard in the spare bedroom at 4.30 am absolutely terrified, as she had woken wondering if it was true that her daughter had died.  Once again I had got up early: not surprising as we had gone to bed at 7.30pm the night before.  Maureen had been tired and frightened and the only solution had been to join her in bed: knowing the consequence would be that I would be up early the next morning.

A couple of hours later confusion arose once again.  Maureen didn’t know who I was as I took her a cup of tea in bed at 8.30 am: she said I looked different.  In fact she then said if she’d known I was coming she would have sorted out some decent clothes so we could go out together.

It seems as if I am between a rock and a hard place in terms of supporting Maureen when she is tired.  Perhaps the following check list might help:

  1. Set bed time lights out by 10 pm.
  2. Siestas in the lounge.
  3. Not getting up until it is light.
  4. Work in spare bedroom if Maureen stays in bed.
  5. Make our bedroom less utilitarian.
  6. Be patient as all changes will take time to have an impact.