Our Key Worker is due at two this afternoon to begin the process of reviewing our Support Package.  He is the only professional that Maureen remembers although she has recently reverted to calling him ‘Mr. Fish’ after months of referring to him as ‘Ginger’.  I’m not sure what she will call him after today’s visit but I expect his trademark of treating us with dignity and respect will remain.  As Maureen lacks capacity decisions have already been made about her future care and accommodation at a Best Interest Meeting, almost a month ago.

I find it a little concerning that I have yet to receive the minutes of the BIM.  However, the decision for Maureen to remain at home was unlikely to have surprised any of the attendees.  The meeting also tidied up our relationship with members of the Multi-Disciplinary Team: with the Home Treatment Team and Maureen’s Care Coordinator bowing out of proceedings.  The former I understand the latter a disappointing feature of Vascular Dementia i.e. no treatment and discharge from the Memory Service.

There is little doubt that Maureen’s dementia continues to progress.  What is unclear at the moment is whether infection or a dip is behind her current presentation.  However, there is clarity about one issue our current Support Package is inadequate and continues to put me at risk of Carer Burnout.

Maureen made a comment very early this morning that is a sobering reflection on her situation.: ‘No one really wants me: not even you.  I know you need a life of your own and have to pay people to look after me.  I wish I could go somewhere else to be looked after by people who really cared about me’.  She is in no doubt about those who care about her and those who say they care about her.  What she doesn’t understand is that self-preservation may mean that I may need to defect to the latter camp unless an improved Support Plan is forthcoming. Then she will be looked after by those who are paid to care for her!

When Homefield House contacted me to say that they were struggling to know how to help Maureen settle down I mentioned how music is so important in our lives.  They clearly followed my advice and Maureen has told me all sorts of stories of how she entertained them during late night sessions.  She has also suggested that we put a show on for them one day as she thinks they might doubt we have Gold Medals for Latin and Ballroom.

Music has continued to be part of our routine since our return home.  We had a restful day yesterday recovering from our ordeal at Grimsby Hospital. Maureen’s G P checked her over in the afternoon and didn’t see anything that was of major concern.  Hopefully,  time will allow a laxative to clear the problem that emerged following her stay at Homefield House.

Once again Respite Care has not worked well for Maureen.  It is fortunate that I feel refreshed from my break as there is now, even more, work to be done here.  Maureen already felt deserted by her family and she now thinks the only friend she has in her life has left her at the mercy of people who have not treated at all well.

This song sums up her mood here at the moment:

As time passes and wounds heal I know Maureen and I will be singing to this one again:

We will eventually find our own way to ensure that I continue to have the energy to be a supportive Care Partner.  The traditional approach to a Respite Break has once again been more trouble than it is worth!

Maureen and I have never been a couple who have taken any medication willingly.  We are great believers in ‘physician heal thyself’ and won’t even take painkillers unless the discomfort becomes unbearable.  Considering Maureen has had a stroke and has suffered from high blood pressures for years the medication she has to take is minimal:  one tablet in the morning and another in the evening.  She has refused to take a statin and her G P and I have given up on this battle.

Despite being told on numerous occasions that she is on her current medication for life Maureen still wages a campaign to be tablet free.  She took up the mantel again last night and refused her early evening medication – questioning if I had the authority to give her tablets.  Four hours later she woke me up from my slumbers worried that she had missed her tablets.  When I offered them to her she refused them once again as I was not a chemist or a Doctor.  Two hours later I heard her crying for her mum via the baby alarm.  When I made it downstairs she was terrified that she had missed her tablets and had put her life at risk.

Earlier in the evening, there had been shenanigans over cleaning her teeth.  Neither of the toothbrushes I presented belonged to her and were being used by others.  This is not an unusual series of events.  It is possible that not cleaning her teeth and finding it unpalatable to use a mouthwash are contributing to having a sore mouth and tongue: a condition that has now become chronic.

This morning a new challenge presented itself –  how to get out of the bath quickly to attend to my distressed wife.  Soaking in an Epson salts the bath is great but it is not easy to get in or our since my hip replacements.  I slipped and cursed at my first attempt: perhaps doing more harm than the good of the bath.  When I eventually arrived at Maureen’s side she was ‘wanting to go home to Nottingham to be with her family’.  She cannot understand ‘why she is being imprisoned here as she has done nothing wrong’. Today is a good day for distraction and redirection as a trip to Freeman Street Market is a fixed feast.

My first scheduled long weekend seems a very long two weeks away at the moment.  My accommodation at the Buddhist Meditation Centre in Pocklington is booked, as it is for the remainder of the year but home-based care for Maureen is not yet in place.   Her challenging presentation shows no sign of letting up and leaves me wondering whether I should have stuck to my guns on Thursday.  My wavering on the need for the immediate respite continues to put me at risk of Carer Burnout and was certainly not in my Best Interest!