Dementia: Like Walking Uphill Through Treacle

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One of our carers  likened recovery from a stroke to: walking uphill through treacle with snow boots on.  I am not sure what additions are necessary when dementia is also present: perhaps a blindfold.

I think we are on the lower slopes today and the blindfold is firmly in place.  Just to make it clear I am talking about me now – the carer.  My carefully laid plans have come to nothing and M is hiding in bed.  No matter what I suggest there appears to be no way forward with semantics and blocking the order of the morning, to any suggestions I make.  All I can do is hope that sleep is curative and the smell of lunch will do the trick.

Little point in going into detail it’s just one of those mornings.  Who knows what the afternoon will bring?

Dementia: Door Notes

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I have read a number of books on dementia and talked to many people about my role as a carer for my wife.  It would be no surprise to any reader of this Blog to realise that my priority is trying to minimise distress.  Sometimes I get it wrong, misread situations, and my responses to M are unhelpful.

I also try to guide other people, relatives and friends, on the best way to support M. Again I often get that wrong and my good intentions are misunderstood.

Yesterday I read a post on Talking Point that has the potential to help anyone who has  involvement with this dreadful condition.    I have managed to get her permission to add it to this Blog:

Door Notes!

I had spent almost 2 solid weeks of dementia around the New Moon and then sometime later I was better for several days straight! Oh Happy Days were back! I did a lot of deep thinking, because some of our 4 adult children are clueless on what to do. They ask questions (I have no answers when I’m “bad off”) and so they avoid us. (My opinion.)

This is what I came up with and taped it to my bedroom door so when you enter you can’t easily miss it. I left space where I or they can add more:

NOT IN RANDOM ORDER:

Don’t ask me if I have taken my meds or vitamins. Bring me water and them (IF) you know for certain that I haven’t, or that I need another one, now.

Distract me with something else. Even if it is just “busy work”. This may last well for 10 minutes or 2 hours then come up with some other distraction.

Have a list made up for distractions that have worked, that you’ve heard or thought of but haven’t tried.

Take your loved one a drive. (my favorite help)

Have your loved ones favorite funny movie to watch: over and over and over if necessary.

Don’t ask me any questions! None!

Let me talk if I want and DO NOT interrupt me while I’m talking even if I am not making sense or have the wrong word or name.

Let me wander around the house, or certain safe areas.

Let me cry.

DO NOT tell me that I “CAN’T” do any of the above. They may not seem to you to help but they DO help me! But if you can distract me into doing something else that is GREAT!

I may want to be alone: perhaps in my room. Or just alone while everyone is around me!

As a last result, for me, at this stage is, hold me and assure me that it will end. LIE TO ME!

This is THE most important thing I discovered when searching my mind: I am “homesick” for ME! I am all too aware in my most worst demented state, that I am not who I was. I may be homesick for my childhood and parents, pets, home. Or for being a Mommy to my babies. Or homesick for who I was in my career. Etc. I wander around; cry; search for ME! And you, my love, may never have even known the ME that I am homesick for, because we had never met then!

I hope this helps, I think it did my children. Jaffy

Dementia: Tiredness Returns

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We have had quite a good day today without doing anything special.  We have been busying ourselves with normal domestic tasks and pottering in the garden. M seems to need lots of naps again.  She is on the sofa for the third time today and may now be down for the night.

Most people who have experience of dementia suggest letting sleeping dogs lie.  I can see the sense of that because every time my wife wakes up it takes her ages to come round.  She generally thinks it is morning; even if it is dark outside.  When she wakes she tends to ask me if I have had a good night’s sleep.

If she remains asleep until our bed time I will rouse her gently and nurse her upstairs to bed.  With care I can move her from the sofa to the bed.  Get it wrong then confusion, and distress, will confront us both as she tries to work out where she is.

I have mentioned before that we were warned that exhaustion is a common after effect of stroke.  It might also be a sign of further progression of dementia.  Rest is the only way that the brain can recover from the strains and stresses of the day.  Any brain that has faced the double whammy of stroke and dementia faces overload all day long: the only remedy is rest.

Dementia: Think Before Responding.

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When someone has dementia your mistakes are not very often held against you.  Quite simply, misdemeanors even harsh words are forgotten and life goes on.  That is if your deeds are not being stored in the emotional filing cabinet.

I think I may have misunderstood what my wife was thinking about first thing this morning.  Therefore, I almost scalded her for sharing her negative thoughts with me.  So I may pay for that one: another black mark in the book.  Missing your mum is not a crime it is perfectly normal – I miss mine.

What I should have done was listen a little more; then I may have grasped the issue.  The ‘book of dementia’ would have suggested talking about M’s mum.  Unfortunately, she had passed before we met but I have heard lots of stories of a lovely woman.  I know enough to have opened up chat about the things she used to do and say.  I missed my opportunity there.

Caring for someone with dementia is no picnic.  You continually have to think on your feet and never take you eye off the ball.  This role challenges my approach to life: the talker now needs to be come the listener.  If he doesn’t he will continue to: ‘put his foot in it every time he opens his mouth’.  How fascinating that was one of my dear old dad’s sayings.

Dementia: Unresolved Grief

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I’m on the case early this morning trying to edge things in a positive direction.  What else can you do when your wife tells you she is fed up with not being able to do things that other people can do?  I didn’t think this was one of those occasions when changing the subject or diverting attention was the answer.  So I went for it and provoked further discussions on her aspirations.  It is possible, that once again, I misread her thoughts as it appears to have been a grief related aspiration: wanting to see her mother.

It is interesting that yesterday morning my wife was on a similar wave pattern.  She explained to me that she hadn’t slept well the night before because she had been thinking about her daughter who passed away a couple of years ago.  She was distressed that she couldn’t remember what D looked like and she found that really upsetting.  I listened for a while, shared experiences of my own, and talked of the happy times we had spent together.  I also reminded her of the photos that we had of D that could remind us of what a generous person she was.  I think I may have been closer to the mark yesterday.  Now I have an idea of what might have been going on this morning.

I think that M wakes up in the morning aware of the curse of dementia.   Perhaps her safety net is to focus on unresolved grief and there is a lot of that around..  Daily grieving becomes part of her psyche because she doesn’t know how to deal with the consequences of stroke: she just can’t bear to come to terms with it’s legacy. Some people would suggest that such denial is unhelpful.  However, I don’t think that taking steps to encourage her to face reality at this moment in time would be helpful.  For the time being working with my wife’s reality can only minimise distress and that remains my prime focus.

Dementia: An Alzheimer’s Afternoon

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I am still thinking about last week’s visit to my home city.  It was vascular dementia in the morning Alzheimer’s disease in the afternoon.  With my mum having the former and my brother the latter, my trip was a bit of a Busman’s Holiday from mixed dementia here.

I took my my sister in law for lunch  at a pub just down the road from my mum’s Care Home.  While we caught up with each other a familiar tale emerged over denial and disbelief in the early days.  It is something that we had both experienced: with other family members all putting different labels to our concerns about our loved ones.  Although we suspected dementia most of them were in denial until the diagnosis from a Consultant stared them in the face.

We moved on to see my bro and I don’t think he was aware of his company.  Slumped in a chair in one of the social areas of his Nursing Home, as chaos reigned around him. Most of the usual suspects were up to their normal antics.  Although it was obvious that a few more of them had become chair bound since my last visit.  Apparently, trudging the corridors is all that my bro has left of his independence: he can do little else without assistance.

I would liken my trip back home to something of a training course as it made me reflect on my approach to caring for my wife.  I talked to professional staff during my visit and picked up a few tips that might be helpful here.  Most of them were at some stage of a long shift but none of them are ever on duty 24/7.  They have breaks where others keep an eye on things.  It is always risky to take my eye off the ball here.  None of this is a complaint it is simply a fact: when you are on an endless hours contact with a marriage licence to boot.

Dementia: Visiting Vascular

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This time last week I was returning my 94 year old mother to her Care Home.  We had been out for a short spin in the car and visited a local park.  Conversation had been very sparse with mum occasionally commenting on the number of cars on the road.  During our journey she asked me if I had a dog?  A little later she enquired if I had a wife?  You’ve probably guessed it by now mum has dementia.

I had been unable to visit mum for a few months and she is a couple of hours drive away from where we live.   My trips are akin to the gamekeeper turning poacher.  My two sisters look after mum’s welfare and I am what if often referred to as an  Invisibles on Talking Point the Alzheimer’s Society  site.  I have to admit I had been very good at popping down to see mum, returning home, and making suggestions about how things should go on.  However over a year into my apprenticeship as a carer I try to be a thoughtful invisible.

I always try to tell my sisters if I am hoping to see mum.  When I pop down I usually have chat with them on the telephone about how things have gone.  But I no longer say anything that could be read as a criticism of their sterling efforts to keep mum comfortable.  So when mum said I could have her copy of the local evening paper, rather than skim the sports page. I wondered if she still opened the pages of her copy of the local rag?  On return home I raised this question with one of my sisters and the paper has now been cancelled.  This was a little different to my previous blundering efforts at intervening in my mother’s care arrangements.

I know with dementia only those carers who are on duty 24/7 have any idea what is really going on.  Popping in for a short period of time you only see what you are shown: sometimes what you want to see.  I also understand that even at 94 my mum will still put on a show, her hostess mode, so she doesn’t worry her youngest son.

Dementia: Keeping the Faith

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We are both footie fans still following the teams of our birthplace.  Neither of us have any time for those who support  a trophy team; who they adopt because they are successful.  Our teams have both slipped from their glory years.  Those halcyon days when my wife’s team swept the board on all fronts have long gone.  Even with ‘Psycho’ at the helm for a time last year the good old days failed to return.  You’ll notice I am keeping quiet about my lads with good reason.

We don’t even own our own ground any more.  Things are tight in the City where the streets used to be: ‘paved with gold’.  The sun may be out but the Sky isn’t Blue anymore in that part of the West Midlands. That goal in extra time at Wembley in 1987 seems a life time ago.

So why this footie issue this morning you might ask?  Simple really I’ve just nipped down to the Car Boot Sale and bought my wife a replica jersey of the team she supports.  Number One on the back: it couldn’t be better.  It’s amazing what you can get for £3 these days: of course I got him to knock a quid off.

The other thing we both have in common is that we both have fond memories of going to footie matches with our dads.  We support different teams; we always will but my Lads will be up there next season and there will be rivalry in the house once again.   Old Big Head and Snoz no longer in the dug out but those Sky Blue Boys will show them Red Lads how to play the game very soon.  No prizes for guessing who we support but interested to see if you can work it out.

Dementia: Moving Forward

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You will gather from this Blog that watching and waiting for decline is not my approach to dementia.  I always think it is worth trying something different.  The forward plan at the moment is to stay in when carers are here, to address the: ‘he can’t wait to get away syndrome’.  Saying I was tired last week and taking myself off to visit family has led my wife to ask me if she is: ‘too much trouble’.  None of this is helpful and it is far from a manipulative wife at work trying to control a wayward husband.

I think it would help us both to see the presence of carer in a new light..  We have to welcome them as visitors to the house.  With no immediate family here this place can seem like a house rather than a home.  Girl Monday (and Friday) is like a daughter to us and we should see her as such.  It is possible that she is all the help we need at the moment:  Girl Wednesday could be placed on standby.

Our next tentative steps need to be on getting out more.  We are going to have a day trip here today and join fellow holidaymakers enjoying the sea side. I am hoping that having a day off from household chores, and gardening, will wet out appetite for travelling a little further than down the road.  We both fancy a trip to Nottingham visiting family and seeing the sites.  I think that we have decided that Trent Bridge Bridge is off limits at £70 for the day, particularly with  Bradman and Laker  no longer on the team sheets.

Dementia: Clear and Present Danger

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No this is not a plug for Harrison Ford – it is an attempt to consider risk in our household.  I have just found my wife trying to turn a hot plate off on the cooker.  Her efforts have resulted in all hot plates being switched on. Checking up on me is nothing new:  I frequently fail to turn the heat off after my efforts in the kitchen.  I am in such a rush to down my creations that I often leave the kitchen overheating.  So the activity is not new but her ability to make things safe has diminished and in fact she has made things worse.  This has caused me to reflect on the risks that are around with her current presentation.

There is little doubt that her functional capacity  fluctuates.  Sometimes she appears to be lucid and completely in control of her thoughts and action.  At others we are at the other end of the spectrum and she has little idea what is going on.  Last night was a prime example of her brain misfiring and confusion being predominant.

The flood earlier in the week was another example of her brain misfiring.  Water pouring over the kitchen floor and she had little idea how to stem the tide.  If I hadn’t intervened there may have been significant damage to more than her ego. So where does all this leave us?  What are the clear and present dangers?   How can we have a life with dementia and minimise risk?

There is a balance to be struck in our plans.  It is not possible to eliminate all levels of risk.  However, it is important for me to continually assess how my wife is at any particular moment in time.  Get it wrong and things will get wet, overheat or even worse.  In short, all I can do is stay by her side as much as possible prompt and mirror safe behaviour.  I think the time has arrived to discourage her from going out on her own.  It is no longer safe to leave her to her own devices for more than a few minutes.  So no more dozing or popping out to the shops for an hour or so for me.