Labels – what difference does it make?

Since May 27, Ma has been suffering from hallucinations, confusion and disorientation (read my other posts Anaesthetics – avoid them if you can! and Dealing with hallucinations (hopefully)).  The jury is still out as to whether she has the onset of dementia or it’s still delirium from her operations.  This year she has had three operations (January, March and May).  Each time she has become disorientated, had hallucinations and some confusion.  On the first two occasions this cleared up after a couple of weeks.  Unfortunately, after the third operation the disorientation, hallucinations and confusion seems here to stay albeit not as bad as when she first came home.

Sometimes it’s like somebody throws a switch.  One minute she is my Ma, and the next minute she is seeing ‘Gertrude’ and ‘Percy’ or ‘the boy’ (I’ve named him Ian) or ‘the little girl’.  Other times she asks me which bedroom she is going to sleep in or refuses to go into her room because she thinks there is either somebody in her bed or she doesn’t belong there.  The toilet and her bedroom seemed to disappear from her memory bank and I have to guide her.  I now have directional signage in the hopes that it helps.  For nearly three days she found her bedroom and toilet without any prompting and then on Friday, she lost her way once more.  Why?

I would be telling lies if I said the changes in her cognitive function didn’t do my head in!  Each time she ‘comes back’ I get a little bit of hope in my heart and then it’s dashed as once again she returns to whatever realm she sometimes dwells in.  Admittedly she is not as bad as she was when she came home from hospital which is why I hold out some hope that maybe she will come permanently back to me one day.

When all of this started, I was desperate for a label.  A label that gave me an excuse or a reason for her behaviour.  I was told it wasn’t dementia but was due to delirium caused by the anaesthetic.  Everyone had an opinion.  People I knew said it was dementia and that I should place her in care.  I remember after her second operation in March when she was ‘off the planet’ the geriatrician at the hospital told me she had dementia and it would be all downhill from there onwards.  I went into shut down mode.  I wasn’t ready for the prognosis.  Within 24 hours of bringing her home, she had regained much of her mental faculties. This also gives me hope.

Now, I realise a label won’t make any difference.  Sure I’ll be able to say she has dementia or delirium or whatever, but it’s not going to change the way I care for her.  Giving her a label isn’t going to fix our situation.  I’ve always said to Ma that we’ll keep coping for as long as we can.  Until either I can’t physically deal with her needs or her mental state is such that she has to go into care, we will keep going.

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