We have had a lovely afternoon with my sister and her son.  Things got off to a dodgy start today with M reluctant to get out of bed until after noon.  In fact she came down stairs for the first time as our visitors arrived.  M was both pleased, and nervous, about seeing  her nephew and his mother for the first time in ages.

Things did not go well for the first hour or so as M struggled to find any clothes that felt comfortable and indicated that she had nothing to wear.  She ate a late lunch in her dressing gown and P J’s.

Gradually she began to enjoy having other folk in the house and changed her mind about a walk towards the beach.  Although it took her a time to find suitable clothing she eventually joined us for a short stroll.

Once outside we saw a different woman: keen to give a commentary as we showed our guests around.  She enjoyed her walk; particularly taking her nephew in hand and guiding him along our sea front walk.  My sister has had close involvement with dementia supporting our mother.   She responded well to M’s questions that would have puzzled an innocent onlooker.  Her sensitive demeanor, and her sons willingness to be led by the hand, made for a pleasant afternoon for M.

It was clear that M was nervous about the prospect of our visitors: particularly as she had not seen them for some time.  I suppose she didn’t know what to expect.  Once she saw that empathy in abundance was on offer she rose to the occasion. It makes such a difference when visitors have direct experience of dementia and their behaviour is  supportive.

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.

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.

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?

This morning I saw the benefit of using C Q C with an immediate improvement in our situation.  I am being a bit naughty here I know; the lengths some bloggers will go to get attention.  So I had better come clean I am talking about Consistent Quality Care, rather than the Care Quality Commission.

As I have mentioned before we have struggled along for a few weeks with different faces from the Care Agency.  The ‘Special One’: C has been away on honeymoon and things have been rather difficult in her absence.  During her absence my wife asked after her every day: ‘Is C coming today?’  That old emotional memory still intact see!

Today I have watched something akin to ‘Poetry In Motion’.  The moment M opened the door she was pleased to see her adopted daughter (my words not hers).  As breakfast came and went we chatted, even bantered, the morning away.  As C tidied up the debris in the kitchen she nudged M effortlessly towards a pampering morning.

On return from  a small shopping expedition I immediately saw the results of the ‘pamper party’.  Not hung over in any way M looked so much better with her lovely locks flowing again and her skin glowing in the sunshine.

C’s approach to her work is commendable; it is not a job it is a cause to this young woman.  Newly married she is often up at the crack of dawn and  on the go until darkness falls, with no paid breaks.   Her rewards for her professional approach: a zero hour contract and minimum wage.

We are so fortunate that we have found C Q C in action and hope that we are able to hold onto this gem of a carer.  Can you blame us for adopting her?

Yesterday morning highlighted the importance of communicating to to others that my wife has dementia.  I have stood at the side of her on many occasions when a frown has appeared on the recipient of her comments.  Sometimes they twig it – that she has dementia – at others they seem totally confused.  This can lead to embarrassment  and distress for all concerned.  Just a little person detail here may help………………….

When your memory is poor you can get all sorts of things mixed up or plainly wrong.  You may forget that people have died and ask relations about the welfare of someone who has passed long ago.  Not being sure about the time of year, let alone the day, all sorts of questions may surface that bemuse the recipient.  None of this is helpful to the person with dementia; particularly if the recipient of their enquiry has no understanding of the condition.   Following an unhelpful response to her enquiry, I have heard my wife say: ‘i’d better stop asking questions because I keep getting things wrong’.

Generally, once people know they are dealing with someone who has dementia an immediate attitude change takes place and they do their best to be supportive.  The problem is how do they find out apart from guesswork and sometimes they might not twig it.  Yesterday I managed to steal a private word and let the assistant in the Supermarket know the score. Immediately, an transformation took place and an enabler was on the scene supporting my wife to find the garments that she needed.  Before I got my message across the same busy shop assistant was merely pointing my wife in the right direction.

I am not sure if the Supermarket concerned has engaged their staff in Dementia Friends Training or we just had a lucky break. That is one issue: the other is how do I communicate my wife’s dwindling capacity, without causing further distress, when she remains in denial about her condition.  Perhaps a bit of sign language would be helpful as you can’t always have a word on the Q T.