It has taken four hours to persuade Maureen to come back to our house after she was determined to ‘walk back to her own home’ this morning.   Lots of people we have never met before played an important part in keeping her safe as she walked around this part of Cleethorpes when it was very warm.  Single Point of Access also managed to shepherd support our way when resources were stretched to the limit.

I gleaned some important information and learned some very important lessons from today’s episode which I will share tomorrow. 

The support we have received from professional staff in the last few days to has once again been exceptional.  We are very fortunate to have skilled staff from Navigo and Focus Adult Social Care at the end of the phone 24/7.  If within an hour of a 4 am telephone call Rapid Response Nurses, and Mental Health Nurses, are on your doorstep you really count your blessings that you live in North East Lincolnshire!

It will be a few days before we know if an infection has been behind significant changes in Maureen’s presentation.  The Home Treatment Team have determined that we need a Doctor’s Review of her condition.  This is likely to take place towards the end of the week when antibiotics will be kicking in to address any evidence of infection – if indeed she has one.

In the 12 months since I was told that Maureen had moderate to severe dementia, her presentation has changed fundamentally.  When you are close to someone you don’t always notice small incremental changes that are significant to the occasional observer. That became obvious when two members of the HTT  saw her on Thursday and made it clear she needed to be reviewed by their doctor.

I’m pretty sure that Maureen’s presentation at the moment is not helped by the contribution we all make towards GIGO:

• A tired husband is no use to her at all.
• Family members who are too busy to call or visit.
• Professional staff who are treating the condition and not the person.

We all have a simple choice – change our approach or the garbage of hallucinations and challenging behaviour may well continue.

I made a start at the weekend with some simple changes to my approach to being Maureen’s Care Partner by:

• Having no carers at the weekend because they were unknown quantities.
• Keeping all doors unlocked except when we were sleeping.
• Resting most of the time when Maureen slept.
• Accepting Maureen’s reality unless it was dangerous.
• Listening rather than talking.
• Observing rather than initiating activity
• Providing all the TLC I could muster.
• Updating family members and the Home Treatment Team on the situation.

It is early days but changing my input has led to positive changes in Maureen’s presentation.  Phone calls from two family members were also just ‘what the doctor ordered’: less garbage is better for all of us!

Maureen’s enthusiasm for the trip to Nottingham dwindled in the final hour before departure yesterday.  When our chauffeur arrived she was adamant that she didn’t want to see her sister: ‘she was cold and her sister should be coming to see her’.  When I saw that my efforts to shift her from the sofa were causing distress I paid our ‘Black Van Man’ a token cancellation fee and bade him farewell.

Although I was disappointed that our away day didn’t happen I’m pleased with what I achieved with an ‘extra day’ on my hands.  It gave me the opportunity to clarify three important matters.

1.  In future, I will be using the Alzheimer’s Society for support.
2.  It is legitimate to ask carers to undertake domestic duties.
3. Maureen will be consulted in the development of our Sun Room.

I’m meeting the Manager of the Alzheimer’s Society this morning to look at a clock that might help Maureen to regain some concept of time.  This will also be an opportunity to explore the nature of the support that will be available in the future.

When Girl Friday (Maureen’s Hairdresser) arrives at ten she will encourage her to have one of her ‘Pamper Days’.  There will be plenty of other tasks in the diary if Maureen says she prefers my company in the shower.

The roof tiles for our Sun Room arrived yesterday and will be ready to be put in place next week.   Following a number of discussions with our builders, we have revised our plans for this extension to our house.  The last thing Maureen needs at the moment is anything that necessitates changes to her normal routines, without her consent!

The clarification that has now taken place will ease my workload along with the potential for Carer Burnout.   If we are also able to build short holidays into our routine, the need for a Respite Break with Maureen going into a Care Home has to be called into question – that would be a change really worth shouting about!

I have decided that until further notice I will not be posting at the weekend and intend to keep all social media switched off.  This will give me plenty of time to explore whether playing this week’s selection of Good Music really does improve cognitive function!

It would be simplistic to label Maureen’s behaviour towards her carers in the last 24 hours as challenging.  She was hostile and uncooperative during the time Girl Tuesday was here.  She carried on in a similar vein with Our Night Sitter accusing her of following her around.  I would assert that Maureen is a victim rather than a cause for concern: ‘strangers’ are causing her confusion leading to challenging behaviour.

For some unknown reason, Girl Tuesday had not been on duty here since early June.  She used to be one of our regulars and had a really good relationship with Maureen.  When she arrived yesterday Maureen had forgotten who she was.

Maureen was asleep when ONS arrived last night and she awoke to find another woman in the house.  This may have been ‘a red rag to a bull’  reminding her of the days when she was aware there were other women in her first marriage.

It is relatively easy to resolve the Girl Tuesday issue with a phone call to the Agency.  We need her to be a regular part of our team of carers once again and I’m optimistic that Maureen will eventually accept her back into the fold.  The issues with having another woman in the house at night are not as easily resolved so we have suspended night sits for the time being.

Update:  Maureen is in good form as I serve her a banana sandwich this morning.  She has been singing a song about my ex-wife being a s*** bag but says she was her dad’s wife.  Her clothing has been changed at last: she is now wearing her cardigan inside out and back to front.  She has been praising a carer who came the other day.  Once again I have no idea who she is talking about but that is nothing new!

In the last 24 hours, I’ve been faced with a harsh reality check on Maureen’s short-term memory. Yesterday, a few hours after I told Maureen that her mum was dead she was talking about sending a letter and going to see her.  Early this morning she was reluctant to get into bed with me because she didn’t know who I was.  I think she has already forgotten her focus a little later on about needing to be able to access her money so she could buy a toothbrush.  Her reluctance to engage in personal care or change her clothing continues despite daily prompting from all quarters.

Most people would argue that Maureen is treading a familiar path: the inevitable decline in cognitive function as her dementia progresses.  A minority suggest that it is possible to address cognitive decline or even reverse it.  Over the next few days, I want to review my interventions as Maureen’s Care Partner and consider if a change of approach might lead to some productive outcomes.