Category Archives: General

Dementia: Phone Call Causes Concern

General

I’m back on my phone call focus with good reason.  My wife’s G P rang this afternoon to ask me to take her in to discuss the fact that her cholesterol level was higher than it had been for a while.   He spent quite some time  explaining the risk factors and the need to go back on statins.  In his normal informal style he did his best to persuade M that she need to add an additional tablet to her daily regime.  He was well aware that he had a job on his hands, as M is reluctant to take tablets unless they are essential.

M seems very disheartened by the news that she needs to take statins.  I think it is difficult for her to grasp the importance of keeping her cholesterol within safe limits.  Like me his explanations may have been too long and complicated.  It was another occasion where KISSS  (Keep It Simple Stupid and Short) would have been applicable.   Even a G P  may find it difficult to change his style when he is trying to communicate with someone who has dementia.   All M can focus on is that she has to take another tablet for life.  She doesn’t seem to understand it is to prevent a further stroke.

The irony is we were just settling down for our afternoon siesta when the phone rang.  Another 5 minutes and the landline would have been disconnected, so we could have had a rest in peace.  No chance of that now and I fear a battle may lay ahead to persuade M to take an additional tablet  this evening.  Those flipping phones if it isn’t PPI: it’s statins.

Dementia: Mobile Madness

General

It suddenly struck me this morning how I have been taken in by mobile madness.  Yesterday I Blogged on Telephone Lines pointing out the problems when some one has dementia.   Late last night I suddenly realised the contradiction between my rhetoric and my practice.  The clever words of my post do not compensate for my ridiculous behaviour: I recently bought M a new mobile phone.

Once I saw it in its box on the book case I had to laugh realising the stupidity of my action.  It’s not enough to see M already has three mobiles that she never uses: I add a fourth.  Fortunately, my one bit of wisdom in all of this I bought it from a Supermarket that will refund my money.  You can guess where I will be going very soon this morning……….

Dementia: Being Patient

General

I recall a friend of mind telling me that my wife having dementia was an opportunity for me to learn how to give unconditional love and practice patience.  His approach to the condition is based on a Buddhist approach to life and E is one of my friends at a local Meditation Class.  It is the patience issue that I am Blogging about here.

I think I have probably improved my ability to give M time to think about or do things.  It is patently obvious that stroke has slowed her down in all sorts of ways.  Someone who has always been extremely capable, and fiercely independent, now struggles with simple tasks.  This gives me a problem: knowing when to assist and when to leave her to figure things out. Sometimes I get it right.  However, it is the patience with others where I struggle and if I look back just a little I can soon put myself right on that score.

My mum has vascular dementia and I have popped in on her condition for several years.  She now lives in a small Care Home a couple of hours drive away and I visit infrequently.  On many occasions I look back and shudder at things I have done, in an effort to support my mum.  I will just deal with a couple of them to remind me of my own shortcoming as I tried to work out how to deal with dementia.

I used to phone very evening to chat to mum about how things were going.  It may have taken me over a year before I gathered that these calls may have been helpful to me but not for mum.  At the end of a long day I was dragging her out of the comfort of her lounge, into a cold recess where she was often unable to hear what I was saying.   I continued my nightly routine for quite some time until it suddenly clicked:  they were pointless.  My mum had nothing to tell me as she couldn’t remember what she had been doing.

It has also taken me a while to work out how to be a visitor to someone who has dementia.  Instead of appearing like the log lost hero, I now stand back and ask those who are there every day how things have been going.  No longer do I march mum down to the pub for lunch: I take a rain check before doing anything.  Those who are there 24/7 see beyond the ‘hostess mode’ that she puts on when I visit and advise me of the best option on the day.

When I got it wrong a year or so ago mum ended up being locked in the Ladies – you hopefully don’t make that mistake twice!  So now it’s a short drive in the car, maybe watching young children playing in a park, then back to the Care Home for lunch.

My own family have a ‘hot line’ to let me know how mum is; so I am no longer hauling her out of her comfort zone to take my calls.  When I visit  try talk to others before I launch into some kind of activity.   I attempt to listen rather than talk and often just sit there holding mum’s hand.  It has taken me a long time to gather this is a sensible way forward.

When my good friend E suggested dementia gave me an opportunity to practice patience I don’t think he was just talking about my wife.  I must try to remember to be patient towards others:  it is not easy for any of us to work out how to behave with the elephant in the room.

Dementia: Being Useful

General

My experience of listening to someone who has suffered stroke, that has led to dementia, suggests a number of things. First of all the fear never goes away and any symptom takes on a new perspective.  That isn’t surprising when you have had a near death experience. Then there is the possibility that the person concerned will develop a perspective that focuses on a chronic condition, rather than recovery.  It’s easy for me to suggest it but I don’t think any of this is helpful for the individual concerned.  Therefore I focus on: ‘you are recovering from stroke; just as I am from bilateral hip replacement’.  I think this is a preferable state of mind and I preach it daily.  So what has this got to do with this morning?

I think it is important for someone who has dementia to feel useful.  So this morning when my wife declined an invitation to join me on a short shopping trip, I left her the opportunity to feel useful – a messy kitchen.  I returned an hour later and she had spent the whole time tidying my mess.  While I have been out she has been ‘on the go’ the whole time.  It doesn’t matter if things are misplaced or not completely clean: she feels useful.

My wife has now taken to the sofa after hard morning’s work.  She feels good that she has been left alone to get on with household tasks: rather than being supervised by carers.  If we are to have a life with dementia we have to take calculated risks, so that we can continue life in our own sweet way.  It all a question of judgement on the day.  This morning went well: tomorrow brings another day and fresh challenges.

Dementia: Telephone Lines

General

I suddenly remembered Geoff Lynne this morning lead singer of ELO, in the good old days, and thought of Telephone Lines a rave from the grave.  As M sleeps a lot these days one of the things I do is disconnect the land line.  If she is awoken by the ringing of our telephone it causes distress; particularly if the call is for her.  The last thing she wants to be doing when she has been woken up is to take a call on the telephone when she is trying to come round.  It is now evident that all telephone calls have the potential to cause distress.

Imagine, if you can, that your short term memory is poor and you have no recall over what has gone on in the last few hours.  The telephone rings and it is for you: with butterflies in your stomach you take the receiver.   You have to say something as the questions arise: so you simply provide detail rather than appear like a blithering idiot.  Confabulations flow and you build up a story based on something that you have done in the past.  The person at the other end of the phone may twig and hopefully does not let on.  Then it could get worse than that.

The caller decides they have to initiate conversation and shares some personal detail.  At the end of the call with the emotional memory still intact ‘bad news’ is often retained and dwelt upon as nothing else has been retained.  With this being a typical scenario it is tempting to leave the phone off the hook more frequently.  The alternative is to suggest some guidelines to callers.  I once read on Talking Point a suggestion that may fit the Bill that went something like this:

Keep calls brief

Open with: ‘Hi just phoning to let you know we are all fine

Do not pass on any bad news

Don’t ask any questions

Just say: ‘is there anything you want to tell me?’

All seems very straightforward but not that easy to pass on without causing upset.

Dementia: Fail to Prepare: Prepare to Fail

General

There is a steep learning curve when you are caring for someone with dementia.  Pretty quickly you develop some ‘Golden Rules’ that you try to keep to.  When you get things wrong you see your mistakes before your eyes and can pay for them dearly.  It is one of those situations where Fail to Prepare: Prepare to Fail, hits you straight between the eyes.  If you are really unlucky you might even get a real slap on the face – as I have done on a couple of occasions.

Yesterday I maybe just got lucky on a couple of occasions.  We coped well without a carer and I managed to track M down fairly quickly when she had gone off for a walk.  At bed time  I averted the hunt for P J’s and tooth brushes by making sure they were on hand.  Such things are easy to do and simply have to become part of my routine.  It is helping others to be supportive where the real dilemmas present themselves.  How do you give visitors ‘the nod’ without causing offence or appearing to be an expert?

I hope she doesn’t mind me doing it but I will use a close family member as my example.  B is hoping to visit along with her son on Saturday.  I don’t think she has seen M since stroke and will not be familiar with her presentation.  She already has something of an advantage over some of our visitors: she is familiar with dementia.  Along with my other sister she is a regular visitor to mum who has vascular dementia.  She has also seen my brother’s Alzheimer’s progress at an alarming rate.  However, I am wondering if there is anything else I can do to make sure her visit is supportive to my wife?

In some ways we are already off to a good start as B has said lets see how M is nearer the day.  I am hoping that she has the time to read my Blog occasionally just to see how things are going.  Also I feel our relationship is such that we might even chat things over before her trip up here.  So a little preparation might just help…….  Now I wonder what to give them for lunch?

Dementia: Risk Taking Can Lead to Good Outcomes

General

I have taken a couple of risks here this morning and on both occasions the outcome has been positive.  Early on  I received a call from our Care Agency that our normal carer was not in work and they were struggling to find a replacement.  As they were unable  guarantee a familiar face, as C’s replacement, I told them we would cope by ourselves.  There would have been little point in sending someone who didn’t know the ropes here and M’s response may well have been to refuse to get out of bed for a stranger.

This meant that I had to hurriedly change my plans to meet my Admiral Nurse as I couldn’t risk leaving M alone for a couple of hours: I made do with a chat on the phone.  It also created an opportunity for us to regain control of our own house: no longer invaded by carers and me scooting off.  So the happily married couple had their house to themselves this morning and things have gone well.  It raises the question about the need for flexibility within Care Plans but I recognise the difficulties with such arrangements.

Early in the afternoon I took another risk by watching Bargain Hunt on the T V and leaving M to her own devices in the kitchen and garden.  I kept my ears finely tuned to have an idea that she was still on task.  It is likely that I ‘bobbed off’, as they say around here, for a moment or two during the one o clock news.  When I came too all was quiet and M had scarpered.

After asking a couple of neighbours if they had seen her, I jumped in the car to widen my search.  Sure enough I soon came across her on a familiar route a couple of streets away.  With minimal encouragement she joined me  in the car and returned home, saying she didn’t know where I had gone.

Some would concentrate on the dangers of my risky behaviour and perhaps I have had couple of lucky break today.  However, no harm has been done and all is well without the involvement of carers or police.  Just another day in the life of caring when dementia is the elephant in the room.  Once you have had one day with dementia; you have had one day with dementia.

Dementia: Reviewing Bedroom Behaviour

General

My bedroom behaviour is clearly in need of review.  I am generally the first in bed at night and often up before the crack of dawn.  Generally, I  and watch with increasing bewilderment my wife’s routines before she joins me in bed at night.  Last night was fairly typical as her search for missing things became even more frantic.  Drawers were opened and banged shut as the search for her toothpaste  intensified.  Nothing surfaced and I stayed under the covers for fear of making matters worse.  Various announcements were made including thieves stealing her belongings yet again.

The search went on for over half an hour and the frustration became more evident.  Eventually M announced that she would sleep in another room, away from the thieving B’s that keep nicking her stuff.  At that stage I decided that I could take it no longer and went down stairs to see the closing half hour of Match of the Day.

When I returned upstairs my wife was standing looking out of the window in floods of tears.  I eventually managed to coax her into bed and console her somewhat with a cuddle.  I reassured her that I would sort things out in the morning and we could easily buy some more toothpaste.

Just for a change this morning I managed to stay in bed beyond the crack of dawn.  Therefore, I saw with my own eyes the difference it makes when I am beside M when she wakes up.  Her fears of being left alone are gone and if I play my cards right she knows she is safe with me beside her in bed.  We indulged in matter of a fact chat for a while then I got up and began my morning tidy up of the bedroom.

As I opened the top drawer of M’s dressing table I found two tubes of her toothpaste.  If only I had joined in the search last night I would have saved us both an hour of anguish.  Why on earth I stayed in bed last night rather than help the search I will never know.  It’s not surprising she couldn’t see her toothpaste wit her loss of vision.  The white tubes were on a white background in the half light of a table lamp.

I need to change my behaviour in the bedroom and work towards last in last out.  The former is slightly easier to accomplish than the latter: M continues to sleep for England.

A Different Approach Pays Off

General

My wife usually wakes up in the morning distressed over one thing or another.  This morning she is worried about whether she is late for school: a return to a childhood nightmare.  I’m pretty sure where it comes from but detail is not important for the sake of this post.  However, just by chance, or intuition, I made a move that seemed to ease her concerns.

I took myself out of the bed and moved to sit on a small bedside table adjacent to her head.  This seemed to have an immediate beneficial impact as I stroked her arm and tried to ease her anxiety.  The reason is quite simple: I am a safe option, no longer in the bed, as she tries to figure out where she is and who I am.  All I am confirming is that I am there to help her; so simple.   As I see the anxieties disappear before my eyes, I almost kick myself for not thinking of this before.

Once I have sorted out what she needs I am off to make her the first cup of tea of the day.  How can the arrival of her ‘Tea Boy’ first thing in the morning be anything other than a good start to the day?

Fine Tuning the Approach to Dementia

General

We have had a good chat this morning about the consequences of stroke for M.  As an ex car worker I would liken it to the engine occasionally misfiring: when the spark and fuel don’t quite arrive at the same time.  Older readers may remember ‘pinking’ when the timing was out and the engine would run on, after the ignition key had been turned off.  Oh those happy days with the timing light or a cheap tuning kit: under the bonnet on a daily basis trying to get the old banger to run smoothly.

Hardly being a neurologist my understanding is that stroke could be seen as a bolt of lightening striking the brain.  Lasting damage has been done to a certain critical areas . No one can say with any certainty what the long term consequences stroke will be.  It is possible that pathways in the brain might re route and capacity will be regained.  Uncertainty is the order of the day and the general thesis is that when dementia has occurred decline is inevitable.  Yet there are days when I am astounded by my wife’s lucidity and intellectual capacity.

It would be lovely if I could just get out that tuning kit or timing light and make the necessary adjustments.  Unfortunately my time under the bonnet has long gone: technology has taken over from the mechanic in me – it’s far too complicated now.  When things go wrong with our vehicle now I take it to an expert who plugs in  his lap top diagnoses the problem and sorts out any problem.  So no tinkering anymore for this D I Y mechanic.

I still think it is worth tinkering with my approach to dementia: sitting back and witnessing decline is not for me.  It is clear that having our regular carer back has made a significant difference.  There has to be other changes that we can make to our environment that will impact upon mood and capacity.  Watch this space: there is lots of room for me to tinker with my approach to dementia.