Charlotte breezed into our lives at noon yesterday and struck up a positive chord with Maureen as soon as they met.  Maureen greeted her with a lovely smile, and they were off as if they had known each other for a life-time.  I stayed around for the whole time that Charlotte was here to provide an ad hoc induction to working with us.

As the afternoon progressed there were lots of opportunities for Charlotte to see Maureen in a functional mode.  In some ways it helped that my antibiotics had gone missing.     Thsi gave Charlotte a chance to see  the absence of logic and rational thought first hand.  It also gave her a stark introduction into Maureen’s ability to recall.

Charlotte stared in disbelief as Maureen repeated the same questions time and time again.: ‘what type of box were the tablets in – when did I last have them- why didn’t I phone the doctors- were they in here, there, or any where?’ and on and on. She soon realised that the information that she had been given about Maureen was sketchy, and out of date.

I have to take some responsibility for only giving Charlotte basic information, when she phoned up to introduce herself the day before.  That is why I stayed around for her first visit: I will do much the same today.  What concerns me is the scant information that social services pass on when they are referring clients.

It is possible that Maureen may have settled at the Day Centre on Wednesday had they known a little more about her.  All they were given were name, rank and number.  I think this is completely unfair on all concerned and is something I aim to address.  Part of me thinks I shouldn’t have to but I will to protect my wife.

One of the outcomes of yesterday afternoon is a confirmation of my Mission Impossible Blog.  Maureen remains eloquent, and can confabulate with the best of them. Therefore social services classify Maureen dementia as early onset.  Anyone who sees her in functional mode, would smile at such a description of her capacity: as Charlotte did.

I have to accept responsibility for my part in the mess we got into yesterday.  There is a certain irony that the guy who sets out to minimise his wife’s distress becomes complicit in adding to it: in no small way.  When I think of what I took part in I shudder with disbelief.  In fact words fail me when I look back on what I acually did.

I took part in a charade that gave Maureen the opposite message that I convey day after day.  We all told her in no unceratin way  that: ‘you are not capable of looking after your husband when he is ill’.  What on earth were we doing?  I think it requires some examination to salve all our consciences, and put things into perspective.

In our defence I would argue that we were following a medical model based on Prescribed Disengagement as Kate Swaffer so eloquently describes it.    So we conveyed to a nurturing wife that she is  no longer capable of looking after her ailing husband.  In fact he is so ill that you need to be taken away to ease his burden.   Maureen kept saying at the Day Centre: ‘my husband is ill and I want to go home to look after him’.  She has spent a life-time nurturing others and we were telling her she no longer has the capacity to look after her ‘old man’.  We were all wrong.

It took a while for me to get things back to normal at the ranch.  Hostility about me getting ‘my friend’ to take Maureen to a Mental Home took a while to abate.  She played her cards well and hit me where it might have hurt.  I don’t blame her one little bit, and she continued her attack on the social worker by phone.  Her line was strong and she left the social worker in no doubt that she would pay for her actions.  I will back Maureen in her complaint if she continues in this vein.  She needs to know I am behind her, and will support her in raising concerns.  No-one likes being ‘dumped’.

What all of this has proved to me is that the medical model and Prescribed Disengagement is not the route  for us.  It is up to all of us to find our own way on our journey with dementia.   This came home to me following a chat with our chemist yesterday.  Evonna has helped us to develop our approach to dementia based on a mantra of: ‘Maureen is not ill she is recovering from stroke’.  I forgot that yesterday and became infected with the ‘medical model’.  I hope that doesn’t happen again: Maureen deserves better than that.  It’s amazing how you can lose your way when you are under the weather!

Maureen is extremely angry with the world.  She didn’t like being ‘dumped in a Mental Home’ and it is all my fault.

In my opinion the Day Centre where she was left was totally unsuitable for her needs.

This is all very worrying indeed.  It doesn’t look as if I am going to get the rest I desperately need, as Maureen feels I have conspired to have her locked away.  She just won’t let up with  her full frontal assault.  I have asked the social worker to return here as soon as possible.

It never rains with dementia: it simply pours

When I presented my condition to the Triage Nurse at our Out of Hours Sevice yesterday I couldn’t believe my good fortune.  Within a few minutes there was a knock at the door and  who should enter but Dr Sibtain the GP I had seen on the previous day.  It made it so much easier when I went into his consulting room a short while afterwards.

Dr Sibtain knows us both well fom Clee Medical Centre, so there was no need to explain to him that  Maureen has dementia.  She had wandered away a couple of times along the way, and I had put the receptionist on watch so I could relax while I was in Triage.  I am going to have to use some cards that a contact gave me to indicate to others that Maureen has dementia.  It will only distress her if I have to go into explanations whilst she is in ear shot.  After all as she often says: ‘she lost her memory once’.  She remains in denial about her peripheral vision loss; expecting some magic glasses to appear so she will be able to get her driving licence back.

As always Dr Sibtains examination was thorough, and prescription of antibiotics followed.  He is well aware of my reluctance to take tablets but we understand each other well.  I will never forget his support in helping me to escape from a life-time on antidepressants.  Just by chance I had stumbled on the  work of Irving Kirsch who has called into question the issue of ‘chemical imbalance’ as a determinant for mild to moderate depression.   His research proved that antidepressnats are only effective as a placebo for mild to moderate conditions. This led me to realise that antidepressants were not the solution: therapy was.  Dr Sibtain referred me for the treatment I needed: Paul Martin (Practice Counsellor) provided the therapy.

Moving on from the hospital Maureen had a further difficult episode.  Just by chance we bumped into Tracey our social worker.  Maureen sought an explanation from me about who she was.  Half an hour of difficulty followed, trying to explain Tarcey’s involvement in our lives.  It culminated with Maureen asking me if I had called Tracey in: ‘because I was finding her difficult’.

I could write several paragraphs on what it took to get Maureen to bed.  Abject confusion followed over medical advice to sleep in separate rooms, to reduce the possibility of passing on the infection.  I began to wonder if she would ever settle down – she was clearly frightened about being in a bedroom alone.  I think the fears of strangers getting into her bed are never far away.

Maureen is still sleeping.  My nose continues to drip like a leaking tap.  I hope social services are in touch very soon.

I am posting at this ridiculous hour as I have just taken my second antibiotic.  I have a chronic sinus infection.  My nose is dripping like a tap and I feel pretty rough.  There  is no way I am capable of looking after Maureen at the moment, and I have just informed socail service accordingly.

The events of yesterday evening were a stark reminder of Maureen’s presentation.  I had to be at my best to keep within the bounds of  compassionate communication: on a couple of occasions I lost it.  There is only so much you can take when you are not feeling 100%.  In short, Maureen is completely confused by me being unwell and has forgotten how to be a  nurse to her ailing husband.

This will all be a real test of social services ability to respond to a mini emergency.  It goes without saying my plans for the weekend have gone out the window.  Yet again I won’t get to see my family and it is not entirely my own fault: I have been flagging up my tiredness for quite some time.  

Setting up arrangements for respite supports Care Partners – not visits from professional staff who nod their heads, and keep telling you they: ‘I hear what you say’.

If I wanted a new EMail address that reflected my mode, at this moment in time, it would be Care Partner@confused.com.  My reading of conventional wisdom leaves me uncertain on the way forward after our little break in Nottingham .  The physical consequence of our trip as far as Maureen is concerned is total exhaustion.  To put it in Maureen’s words: she has felt ‘wiped out’ since our return from her home town.

There are lots of catch phrases thrown around once a diagnosis of dementia has been made.  ‘Use it or lose’ it has parlance amongst the experts.  I am just wondering if we have overdone it?  Have we done too much in one go, and what are the long term consequences?

Maureen is an outdoor bird.  As soon as she is down in the morning windows, and doors, are opened.  If conditions are favourable she will be out in the garden ‘stretching her leg’.  She always recites Dr Stead’s mantra: ‘to keep walking’; to address the discomfort in her left leg.  Since our return from Nottingham she has been too tired to venture any further than the garden.  Her trips outside have been to; put washing on the line, and occasional inspection of the garden.  She is simply too tired to do much else.

I think it is obvious that the trip to Nottingham has taken a significant toll on Maureen’s physical and mental capacity. Three days on and some of the memories associated with the trip have faded.  She became very upset last night: thinking she had not seen her sister.  We spent a couple of hours in the company of Val.  Maureen even invited her ‘little sister’ up to Cleethorpes, as she thought  a  short break would help the loneliness of Val’s life in Nottingham.  She has plans to write to Val today, and apologise that we didn’t get over to see her.

The issue I need to resolve is if our little trip has been in Maureen’s long term interest.  Has the herculean effort on Maureen’s behalf supported recovery or has it increased the rate of  decline?  It is something I need to come to a conclusion on if our pursuits in the future are to have a postive impact on Maureen’s welfare.

Our journey a little further afield than Immingham has pleased several family members.  However, our agenda is not to keep others happy: it is to be clear about what is in Maureen’s long term interests.  How fortunate that Mel my new Admiral Nurse starts today.  I will also pop along to our local chemist and chat things over with Evonna.  I can also seek Tracey, our social worker’s opinion, as I am sure she will be in touch today to confirm arrangements for the weekend.

Many hands make light work!

It’s 4.30 in the morning and I would defy anyone to sleep after the conversation I have just had with my wife. Wait a minute I need to correct that to: after listening to Maureen for the last half an hour or so. To put things into context we are in Nottingham staying with her brother and his wife. It is one of those occasions when as soon athe clock struck nine I would be ringing Heather my Admiral Nurse to get her take on things. Unfortunately,Heather has left, and Mel her replacement doesn’t start until Monday. So my contingency plan is to talk to Evonna as soon as we are back on home turf. If it’s her day off from pharmacy duties at Lloyds, then I will just have to ruminate on matters a while longer.

I will deal with how we made it to Nottingham later in the day, after spilling out the detail of Maureen’s reality. After lying in bed listening I now have a grasp of Maureen’s world: a fascinating insight into her thoughts. It goes something like this:

Maureen lives in a Care Home in Cleethorpes. She suspects they will keep her there until the money runs out. There is this carer called Paul who is really helpful to her. It was embarrassing at first as he sorted out her washing, and solved the shortage of underwear. She thinks he may be gay but he is very helpful.

Some lady carers come in to look after her. They are very kind, and sometimes give her a shower. She isn’t really keen on this type of personal care but she is getting used to it. She feels sorry for them as some of their male clients are cheeky. Some of them follow in their mum’s footsteps to go into caring work.

She feels she can now look after herself. As she has been discharged from hospital she hopes to be able to go home soon. She is often really fed up and has little in common with the rest of the residents in the Care Home. She often stays in bed as there is no-one she wants to talk to and has nothing to do most of the time.

I am sure I have missed out bits of Maureen’s monologue. This is a very different presentation from the listener that Maureen is. It is a fascinating insight into Maureen’s reality. It has reassured me that she feels I (Paul) am doing my best to look after her.

How selfish of Heather to be on the point of emigrating.  Hey girl if you are reading this; one final musical number for you, Dolly of course: Just When I Needed You Most .

Evonna I hope you are there on Friday when we return to the ‘Care Home’. If not I know that Mel will be itching to ‘get out the blocks’ on Monday; so may as well help her to get into the old routine.

How lucky I am to have mentors so readily available. Some people laughed when we said we were moving to Cleethorpes!