Maureen refused to go out this morning so I tried to drown out the noise of the builders with YouTube at full volume.

Maureen was particularly taken by above Waltz and many more.

Silence has returned to our household now but as the villain of the peace my status is zero..

All I can do is give Maureen time to forget the massive disturbance I brought to her life this morning.

Earlier she told me not to spend too much money on the house as we needed a smaller place.

A while later she said ‘those men were making changes to her dad’s house without his permission’.

With luck, she will drop off in the chair and my status will return to hero when she wakes up!

I hope you have a good weekend.

Posted at 4 am

I need to make it clear that my rants about Maureen being prescribed trazodone are in no way a criticism of the individuals concerned.  Last week the Specialist Doctor concluded what we already knew: Maureen’s dementia had progressed to severe.   In the short time that she had at her disposal, she tried to do something that would calm the situation down and make Maureen’s presentation more manageable.  What she didn’t have time to do was assess to what extent Maureen’s environment was making her presentation challenging.

Living on a Building Site is likely to drive anyone bananas. When our children neglect us we all feel aggrieved.  If you had dementia into the bargain, your reaction to such dual forces of distress is likely to be magnified and played out publicly.

If you are a Specialist Doctor working predominantly for a Crisis Team you are generally fighting fires.  Your brief is to pour water on situations to dampen the fires of distress. Medication is your medium and your prescription pad is always close at hand.

When your Care Partner has skills and substantial experience in behaviour management then it is a different ball game.  If he also knows when to call in support then you always have a sporting chance of remaining in your own home without the need for medication that might calm you down but is likely to put you on the slippery path to dependency.

Update: I drafted the above before going to bed last night.  Early this morning Maureen woke up and didn’t know where she was or who I was.  She spent quite some time trying to smash her way out of the house.  I called for help and received telephone assistance from the Konar Suite.

Any lone carer awoken in the early hours would have struggled with what I had to endure this morning.  As my friend from the Konar Suite said you need a Plan B.  It is fortunate that one of Maureen’s son had arranged to be here this morning.  Unless family support is now forthcoming on a regular basis Maureen is likely to be encouraged to take the first step on a ladder that could result in her losing her independence.  I fear that trazodone will be on the agenda once again this morning!

We are both locked in here against our will now.  Maureen is reassured her son will be here soon to sort our incarceration out.  Youtube is working its normal magic and the tea is flowing to ease the vocal chords.  There is no need to give Maureen lorazepam as she is now as happily singing along to Rod Stewart.  Where on earth was that man in my hour of need?

I hope to provide further updates as the day progresses

It came as no surprise to me yesterday when Maureen’s dementia was classified as ‘severe’ in the opinion of the Specialist Doctor from the Home Treatment Team.

 Any follower of this Blog would have already gathered from my daily description of events that decline had been a feature of Maureen’s presentation in the year that followed a diagnosis of moderate to severe dementia.

Once the ‘cat was out the bag’ – so to speak I attempted to assert a Working Position for the next couple of weeks.  As always as I contacted members of our MDT and other supporters of our cause the response was always person-centred:

• There is a tacit agreement that trazodone will only be administered once we have something to measure its impact against.
•  There is a general acceptance that using Care Homes is counterproductive at this moment in time.
• The door is always open to contact members of our MDT when needed.
• Our general health and welfare will be monitored closely.
• Those family members who are aware of the new diagnosis recognise the importance of maintaining contact.

When your GP phones you with an appointment less than two hours after the new diagnosis you count your blessings, as I always do, that you live in this area.  My hardest task yesterday was persuading Maureen to accompany me to Clee Medical Centre to see a G P who always treats us both with dignity and respect.   Then it gets even better when Reception Staff agreed to keep an eye on Maureen so I could chat to our G P in private!

I had to seek help last night when Maureen was very distressed and refusing to come home.  A stand off took place outside her Aunt’s home and it took a long time before we were able to ease Maureen’s distress.  It is worth noting here that her Aunt is a veteran of dementia care having supported her late husband for over 20 years.  His Alzheimer’s presented very differently to Maureen’s mixed dementia but nevertheless, she was in good hands.

When Support Workers from the Home Treatment Team arrived on the ground Maureen had calmed down a little.  From a distance, it appeared that they were a ‘red rag to a bull’.  The ‘other women’ were now in Maureen’s face just as a woman from our neighbourhood had been earlier in the day.  I returned to the scene and tried to play my trump card of getting Maureen and myself away from these two ‘interfering bitches’ and that’s putting it mildly.  They had told me that Maureen was being abusive and upsetting her Aunt and ‘none of this was fair’ to any of us.

Eventually, her aunt and I managed to get Maureen into ‘her car’ and I drove her home. When a Nurse from the HTT arrived at our door she saw that Maureen was no longer distressed and left us to it.   Maureen and I then had a very pleasant walk along the Prom and around Cleethorpes: just the sort of time that Maureen craves.  She wants us to be left alone so ‘our courting can continue and we can get to know each other’.

We both agreed that walking around Cleethorpes at night was preferable to sitting in front of the TV.  On our return home I managed to persuade Maureen to put her PJ’s on – the pants went over another pair.  It took a long time to remind her where the bathroom was and which side of the bed was hers.  Once in bed, she settled down and dropped off to sleep quickly.  She woke following my early morning return from the bathroom and was lost in her surroundings.  It took a while to guide her to the bathroom and on her return, she dropped off within minutes.

I’m very grateful for the Nurse from the HTT  her wisdom prevented Mauree going down what could have been a difficult road.  This morning there is a scheduled visit from a Specialist Doctor following the request for an assessment from the Home Treatment Team.  IMHO Maureen could not be in safer hands than with someone who has often supported us on this journey.  Twelve months ago this doctor, who exudes empathy, told me that Maureen had moderate to severe dementia.   It will be interesting to hear her assessment this morning.

Our Key Worker reminded me yesterday that we are all acting doing our best to protect Maureen’s  Best Interest.   Therefore, patience is key at this moment in time as we all respect the decision to allow to remain in her own home.   There are five weeks to go until her home is fit for purpose.  The Sun Room, along with an additional shower room will make then make it easier for family members and carers to stay in our home to give us both the additional support we now need on this unforgiving journey.  Talking of showers – I managed to persuade Maureen to have one this morning and wash her hair.  In the last six weeks, I’m the only person who has been able to persuade Maureen to have a shower: three in six weeks.  If I’m patient things can only get better!

After an extremely challenging weekend, I will be seeking immediate help this morning. Maureen is finding it difficult to cope with ‘living on a building site’ and we need to find a way of easing her distress.  I am also feeling unwell and need to consult my  G P about my general well-being.

It is not surprising that Maureen is distressed by her surroundings:

She just wanted to get away yesterday – when exit via the back garden was impossible she took to the road for over an hour:

None of us could predict how Maureen would react to building work taking place and completion is several weeks away.  Maureen wants to see our Key Worker this morning ‘as he promised her that she could go home soon’.  As he is is on holiday for a week I will be contacting the Duty Worker at Focus Adult Social Work to request a home visit.

I will also be seeking a review of the ultimatum I have been given to choose between my Admiral Nurse and Support Worker at The Alzheimer’s Society: this is not the time to require me to reduce my support network!