Dementia: Seeking Person-Centred Respite

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One thing that Maureen craves is to have more time with her family.  When we went to Nottingham last week she was a different person in the company of her brother and sister. There were times when she functioned so well that it was difficult to believe that she had dementia.  It was lovely to see her with familiar faces visiting old haunts from her childhood.

Maureen forgot that we had been with her family almost as soon as we turned the key to enter our home in Cleethorpes.  A few days later she has little idea how long it is since we have seen her brother and sister.  However, when I remind her of the sites we saw in Nottingham the smile on her face is captivating.  The following video uses a bookcase analogy to explain that the emotional memory remains intact even when dementia marches relentlessly on.

We have no immediate family in Cleethorpes so I have plans to make it easier for us to get together.  On Sunday we will travel to the Buddhist Centre in Pocklington to catch up with one of Maureen’s sons on Mother’s Day.  In April we will create a rendezvous in Lincoln to meet up with her other son. I’m hoping that these arrangements will become regular events in a monthly cycle.  I also hope to set in motion regular respite for myself which will also create more family time.

Maureen has never had a positive experience of Care Home based respite: either being bruised and battered or escaping from ‘captivity’. She has also retained the memory that we have ‘tricked her’ into going into Residential Care.  From my point of view telling Love Lies is a daily coping strategy but blatant deceit about Respite Care is a step too far: it will not be repeated.  Therefore, home-based care is the only option at this point in time.

I’m hoping that we will shortly establish a regular pattern of long weekend breaks. Ideally, this will involve me leaving here after Girl Friday arrives and returning before Girl Monday departs. I’m hoping that carer support will be supplemented by family presence while I’m taking a monthly break: a person-centred- approach to preventing Carer Burnout.  If things go according to plan such arrangements for April and May will be in place prior to the Best Interest Meeting on the 6th of April when Maureen’s future care and accommodation will be discussed.

About Remember Me

I am a retired adult educator. My wife had a stroke in February 2014 and now has mixed dementia. Her recovery from stroke has been exceptional apart from 50% loss of peripheral vision and vascular damage. 'Dharma For Dementia' is my approach to being Maureem's Care Partner: it aims to end the suffering of 'Prescribed Disengagement' (Swaffer) .
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