Dementia: Flogging A Dead Horse

General

When our central heating boiler developed a fault a couple of weeks ago I had a number of conversations with the Heating Engineer.   Craig compared our heating system to: ‘flogging a dead horse’:  it’s nowhere near as efficient or cost effective as it could be with modern radiators to match our boiler.  There are parallels here with Maureen: there is little point in encouraging her to do anything when she is tired.

I now realise that she gets all the stimulation she needs on Monday, Wednesday, and Friday mornings.  When Chloe or Gail are here she is in full flow.  As I sat at the keyboard yesterday morning I could hear Chloe and Maureen catching up on their respective weekends.  Apart from the occasional bit of repetition Maureen was conversing eloquently.  It many ways it was a joy to overhear but part of me thought OMG she’s going to be worn out for the rest of the day.  Maureen rested her eyes as she put it for a couple of hours after lunch, worn out by her morning’s endeavours.

At various times of the day I try all sorts of things to lift Maureen’s mood or provide cognitive stimulation.  Cooking and music go hand in hand.  When the going is good my dance partner will appear and pull me away from a hot stove.  Later in the evening it is unusual if we aren’t singing along to someone or having fun with a crossword.  I have even eased her into using her new glasses, knowing they are still on trial.  All I need to do is: keep a watchful eye on Maureen’s energy levels, stay by her side or she might start ‘packing to go home’, or wander off on one of her walkabouts‘ .

It is easy for me to understand that Maureen tires easily and needs plenty of rest.  What she also does is frequently resort to the Hostess Mode to persuade professional staff and close family that all is well. This may mean that occasional visitors have no idea about how she really is, and often engage her well beyond her physical capacity.  It is difficult for them to understand how fragile she is, as they never see her sleeping for days, after she has kept herself going for their benefit.  One of my tasks is to try to help them understand that she needs periods of rest throughout the day, otherwise their visits lead to days of exhaustion that may well have a long term impact on her wellbeing.

 

 

 

 

Dementia: Code of Conduct for Caring

General

There is already a Code of Conduct for Care Agencies, and Care Staff, with guidance for all interested parties.  I would hope that Hica (our Care Agency) are familiar with these documents.

In future if our regular carers: Chloe, Gail and Gemma and are not available then replacement staff need to have some information about us.  This needs to include details of:  Maureen’s current presentation, personal history, and how we run our household.  They also need to have had considerable experience of supporting clients who have dementia.

It was evident that the carer who arrived on Saturday morning knew nothing about us.  It is fortunate that I decided not to go to Coventry, and Maureen didn’t wake with a stranger in our house.  Maureen’s reaction to this well-meaning elderly lady was to go out for a walk because she is fed up with people she doesn’t know  ‘interfering in our lives’. As she often says: ‘the house is not our home any longer’. Her assertion is just another sign that when she has energy her ability to think rationally and logically is intact.

I made a wise decision to cancel my plans to go to Coventry on Saturday. We also had a very lucky break on the same day:  Maureen’s cousin spotted her heading into Cleethorpes; going in the opposite direction of home.  He pulled up in his car as she was attempting to cross a very busy road.  Terry described Maureen as: ‘looking very confused and exhausted’.  I’m not surprised by his description as she had been walking for well over an hour: ill clad on a very cold and windy day.  I had been out looking for her  around her usual haunts, and I was very relieved to see a note in our letter box saying that she was in his safe hands.

I will be rather reluctant to allow Maureen to run off again: even if it’s to escape from strangers who have been sent her to support her.  However, prevention is always better than a cure, and there is a simple solution to all of this!

 

 

 

Dementia: Code of Conduct Needed!

General

As the majority of professional staff are not at work today I will deal with our experiences on Saturday morning tomorrow.   What I am intending to do is to suggest an interim Code of Conduct for Care Agencies and Carers. This will hopefully avoid a stranger arriving on our doorstep, ever again, without: any prior knowledge of Maureen; our set up; or training in dementia awareness.

Todays post is my tentative attempt to help family members be supportive over Christmas.   It is a copy of an Email that I sent yesterday  to clear up any misunderstanding over our capacity during the Festive period:

‘There have been significant changes in Maureen’s presentation in the last couple of weeks.  Periods of confusion are more frequent and intensive.  Maureen tires easily and sleeps a lot.  I disconnect the landline when she is resting.

Maureen is still be able to put on a ‘hostess mode’ for visitors, and professional staff, that masks her general presentation.  I continue to seek  professional advice on the best way to provide support.
Our plans for Christmas have to be very conservative, if I am to cope.  We will not send any cards or buy presents.  It is unlikely we will put up any decorations.  Our time will be spent here.  Visitors are welcome in very small numbers; for short periods of time, providing they are spaced out.  We will be unable to provide food other than cake and biscuits.
You will appreciate that this is a very tough time for us and your understanding is appreciated.
Kind regards’

 

Dementia: A Lucky Break

General,

Whatever the reasons for the mix up over carers for today it now has to be seen as a lucky break.  With Maureen’s current presentation my suggested arrangements would have put her at risk.  Leaving her to cope alone for three hours in the morning and two in the afternoon were at best optimistic: now I view them as niave.

After the events of the last twelve hours I am pleased that I have already cancelled my plans to travel to Coventry this morning.  It would take more than the time I have at my disposal to detail events of the last 12 hours.  In summary there have been periods of real confusion; about time, place, and person at a level I have not seen before.  This has included such assertions as ‘you do not belong in my bed to why do the owners of this place not do this that and the other’.  Maureen has also been hearing voices and seeing people that are not here.  This morning she has no recollection about my plans to go to Coventry.

If Maureen continues in this vein I will have to try to ease her to Out of Hours G P services at the hospital.  Unfortunately, my attempts to get her assessed earlier in the week failed.  It might be better to keep her calm over the week end and try to get her to see her own G P on Tuesday – he is not in work until then.  The risk of seeing other people is that they may not understand her intolerance, and reluctance, to take medication.  Dr Munjal treats her with the understanding and compassion that she deserves in all her interaction with other people.

In terms of seeing my mum and family in Coventry it’s back to the drawing board.  I no longer think it is safe, or sensible, to leave Maureen to her own devices while I’m over a 100 miles away.  A tiring day trip to Coventry is no longer a practical option as I’m pretty tired, and not in great health at the moment.  What I now need is an overnight stay where Maureen is looked after, in our own home, by familiar faces.  Simples as the Meerkats would say.

 

Dementia: I Don’t Believe It Once Again!

General

I am breaking my new rule and blogging again today  because I need vent.   Once again my plans to see my mum and other family members have been frustrated.   I have just called off tomorrow’s trip  because Maureen would have been looked after by a carer she had never met before.

It isn’t rocket science to understand that routine, and continuity, are very important when someone has dementia.  So imagine the scene tomorrow when I leave the house shortly before 7 am to return by   9.30 pm.  At 10 am a total stranger arrives in the house.  Maureen may already be distressed that her ‘tea boy’ has not delivered at 8 am: perhaps she has been wandering around for a couple of hours looking for him.  Chloe one of our regulars had mentioned that she would be popping in, and now a new face 30 years older is in the house.

The stranger would have stayed until 1 pm unless Maureen had given her early release.  Then she was due to return at  3 pm for 6 hours.  Imagine having to spend a total of 9 hours with someone you had never met before.  Why would you want to do it?  Imagine how difficult it would be if you had dementia.

A short while ago I phoned up the Agency and expressed my concern.  I asserted that the arrangments were bad practise and totally unsuitable for someone who has dementia.  The person at the other end of the phone totally agreed with me and apologised.  As Victor Meldrew would say: ‘I don’t believe it’ !  How on earth can this happen when a Care Agency know the requirements of its clients?

Dementia: Preserving Independence

General, Uncategorized

It is possible that I’m sailing close to the wind this morning by deliberately giving Maureen late notice that I am going to Coventry tomorrow.  However, after another difficult day on the clothes front, mentioning my trip yesterday would have been unhelpful.  Therefore, I will broach the subject with Maureen once Chloe, today’s carer arrives.  This will give Maureen an opportunity to chat about the amount of care she would like on Saturday.  Our social worker is on standby to fine tune the arrangements once Maureen has outlined the level of support she feels she needs.

My attempts to visit my family in Coventry have been frustrated on a number of previous occasions.  Maureen and I have sometimes had plans to go and then she has not felt up to travelling.  A couple of weeks ago I postponed a visit as I didn’t think it fair to leave Maureen after a rather difficult few days. On other occasions carers have not been available to stay with Maureen in my absence.

Carers are available to stay with Maureen for the whole time I’m away on Saturday. What we are all trying to preserve is Maureen’s independence, and at the same time ensure her safety.  This is not a simple path to tread, as Maureen’s presentation can change so quickly.  Therefore,  late notice of my plans for an away day seem the most pragmatic solution to a challenging situation for us all.

Dementia: Bad Hair Day With Excellent Late Night Show

General

Yesterday was a game of two halves, to use a football analogy.  Maureen didn’t find it easy early doors but came into her own, as the match went on.

Shortly after kick off, things seemed to be going well.  Maureen arrived downstairs as Gail our carer arrived.  She greeted her like a long lost friend that she hadn’t seen for ages.  Obviously no recollection of the previous week when she was telling Gail we didn’t need carers any longer.

Following my ‘cunning plan’ Gail went out on a shopping mission.  Maureen and I had  breakfast together and things seemed to be on schedule.  When Gail returned Maureen helped with putting the shopping away.

Lunch went ahead as normal, with Maureen displaying a healthy appetite.  She sang along to Christmas Carols as she munched away on another one of my Italian creations.  Once again I scored well for my efforts: particularly on a rather delicious sweet; with ice cream of course.   Following lunch we moved into siesta mode with Maureen managing an hour on the sofa.  When she awoke there was a hint that the hairdressing appointment was a bridge too far.

After around half an hour of upset I encourage Maureen to abandon the trip to let Mark shorten her hair.  The prospect of sitting in a hairdresser’s chair just wasn’t palatable for Maureen on this occasion.  At my suggestion she took to her bed with the only clothes that felt comfortable – her P J’s.  Once again all clothing was too tight and causing distress.

Maureen’s performance in the evening would have got her a ‘Woman of the Match’ award.  Once she had slept for an hour or so in bed, a different player emerged from the tunnel.  She was great company at the tea table singing along, once again, to anything the resident D J put on the deck.  Following tea she accompanied me on a short trip around Tesco and coped well.  On our return she held her own in conversation with two sets of neighbours in the street.

As the match (evening) was drawing to a close she put in a sterling performance.  She searched for her new specs and eventually seemed settled with using her distance glasses to watch T V – quite amazing after the difficulties at the opticians on Monday.

What will today bring?  I have no idea!  Maureen has woken early with a heavy cold.  She may go to see her G P: she may not.  All I can do is try to minimise distress and capitalise upon opportunities for cognitive stimulation.  It makes for an interesting life!

 

 

 

 

 

Dementia: Opportunity Knocks Again

General

If I’m careful today could be a platform for moving forward on this hazardous journey.  It is one of those occasions where I have to take note of nitram a colleague from Talking Point  who asserts: ‘fail to plan – plan to fail’.

The good news is that the new glasses are in the bag: no they are in the drawer.  Not that we are over the rapids just yet, as concern remains about the prescription and frames.  SpecSavers have excelled in their support to Maureen and thanks will be duly recorded by E Mail.  If I can nudge the wearing of glasses then all sorts of possibilities open up, as Maureen will be able to read again.  I must remember to go slowly on this one otherwise I will blow it.

If my luck holds today Maureen may just go through with allowing Mark to work his magic on her hair.  It is longer than I have ever seen it: even in photographs before we met.  Mark is excellent with Maureen as he is very dementia aware.  My problem may well be getting her through his door as tiredness may become an added reason not to have a cut and blow dry: even a few highlights.

I have a ‘cunning plan’ to improve the chances of Maureen making it to 4 pm without being on the brink of collapse.  If I can encourage her to take a couple of naps in the day the odds move in her favour.  Gail is due at 10 am and she always cooperates in our plans.  Some shopping is needed, and Gail will be happy to help us out while I nurse Maureen through the morning.

We will try to have one of those ‘easy days’ that we keep talking about.  If I prepare a leisurely lunch, followed by a  siesta  we have a fighting chance of Maureen being up for a couple of hours with Mark.  My guess is if I get her through the door she will go in for the full works, and opt for a few highlights.

Planning is always difficult when dementia is around.  Perhaps you can only ever give it a go and improvise as the day unfolds.  You will note I continue to struggle with ‘go with the flow’ – it just seems too passive for me.

 

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.