“She’s still in there somewhere!” Is she? Really?

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Don’t panic.  This isn’t an excuse for me to drone on about what makes us human.  The constituent parts of a personality and whether we are still the same individual when our cognitive function deteriorates is a fascinating topic, but I am in no way equipped to speak knowledgeably on the subject. The post title merely refers to this oft quoted phrase “She’s still in there somewhere” – the implication being that we need not despair, our loved one is still with us even when they are ostensibly not with us (or with it) at all.  Is this just a panacea of modern times?  Is it the same as telling children that a beloved pet who has met an untimely end is “looking down on them” from heaven? Or the fond belief that someone is still with you after their death if you “hold them in your heart”?  I am in no way wanting to belittle the feelings of those who have been bereaved or those who have a strong faith – there are ways of keeping the essence of someone alive despite their physical demise but the truth is that over time, despite the platitudes, it becomes clear that the person is lost.  They have gone.  Elvis has left the building.

In mum’s case, Elvis hasn’t quite left the building yet but he is entering his post-Vegas morbidly obese phase.  She can no longer communicate with us.  She can no longer respond appropriately to verbal or physical cues.  She shows no discernible preference for any activity or topic of conversation.  There are glimpses of a personality but I’m not sure that the personality we see is actually hers.  The elements of naughtiness that led to her calling Donald Trump a Cock (Explaining why granny is allowed to get away with ‘that type of behaviour’) are hilarious and a welcome addition to the high brow political discourse in our house, but that type of comment was never really her.  She’s just displaying classic disinhibition – which is great – but her entire non-dementia personality was inhibited and British and polite and reserved.  She wasn’t a woman who shouted about Cocks (really not sure whether Cock needs a capital letter – thoughts?).  So that episode wasn’t actually a glimpse of mum’s naughty side coming through, it was a glimpse of a person with dementia being able to throw off the shackles of inhibition and say the first word she associated with a vision of the orange buffoon.

My lovely aunt who died last year (see The Sisterhood ) came to stay for a few days the previous year to look after mum whilst my dad was away.  I think it was an eye-opener for her but my aunt was an amazing woman who took it in her stride.  To provide a bit of respite for the respite giver, I invited them both over for Sunday lunch (because that’s just the kind of girl I am, my generosity and benevolence know no bounds) and my aunt trotted out the old phrase.  When I asked her how the past twenty-four hours had been she said, “Yes, she’s clearly deteriorated hasn’t she, but she’s still in there you know.  I still see a bit of twinkle in her eye that’s clearly her.”

Hmmmm.  WTF?

a) What ‘twinkle in her eye’?

b) How would a ‘twinkle in her eye’ indicate retention of personality traits?

c) Are you saying that ‘she’s still in there’ to make yourself feel better / make me feel better?

d) She’d never really struck me as a ‘twinkle in her eye’ kind of person so are you referring to a more cheeky side of my mother that I never knew about?

 

Obviously I have no answer to these questions given the fact that my aunt is now deceased and I wouldn’t particularly have wanted to grill her about her phrasing at the time anyway – it would have seemed churlish, let’s face it, to debate semantics when someone is doing you a colossal favour. It just strikes me as a curious, yet very human response; perhaps overly hopeful, perhaps genuinely felt.

However, I don’t feel it and I can’t make myself believe it.  She no longer looks like my mum, smells like my mum or acts remotely like my mum.  She doesn’t recognise me and I don’t recognise her but its not as bleak as it sounds – she’s very sweet to have around, she smiles, she’s a warm body for the dog to cuddle up to (the dog loves her) and she doesn’t mind – she doesn’t really mind anything, presumably because there is nothing left of her mind.

As I have said in many forms and guises previously, it is as if mum died a few years ago and as a replacement bus service we have an affable stranger who visits intermittently, a stranger who contributes little but is not a negative presence either.  I feel a sort of ambivalent inertia about the whole scenario.  I think I’ve done my grieving – now I’m just cracking on with the practicalities of another body to feed and toilet in a similar way to a small child or a pet.  Yes, it could be better.  But, it could be worse.

4 thoughts on ““She’s still in there somewhere!” Is she? Really?

  1. I am with you on this – the demented loved one is living a different reality and is almost certain to have a largely unrecognisable personality. One of the most useful things a very experienced carer said to me is remember that your mother now has the needs of a toddler and a similar lack of inhibition and of perception of danger, but she is still an adult; when she can be given a safe choice that she can understand, give it to her and respect her decision. I am also part way through a book called “Surviving Alzheimer’s” by Paula Spencer Scott which I am finding really insightful and useful.

    Mum is now in the dementia unit of a wonderful care home. We took the difficult decision to move her after she was put on Risperidone which had a very adverse effect on her mobility (she lived with one, latterly two, carers in a house with brick floors and steep stairs). It has been a great success; she is off Risperidone, she likes the staff (especially the male ones) and is generally far more contented and co-operative, there are activities for her if she wants to participate and she benefits from the company of others with dementia (male and female and in its myriad guises). The home is also able to cope if she wants to be up all night and asleep all day. It is also an easy (and, at times, very entertaining) place to visit; the staff are friendly, communicative and have time for her (and us) whatever else is going on. It also includes a nursing unit, should she need it (a very important factor to consider in choosing a home).

    Liked by 1 person

    1. Thanks Annabel – It sounds as though you’ve found the perfect place and I’m sure that your mum is really happy there as it seems they tailor their facilities to each resident. Mum is still at home with dad who is just about hanging on in there. Her mobility is likely to be our biggest issue too, we are now restricted to downstairs living but seeing dad try to move her out of a chair is frankly terrifying when I think of what it is doing to his back, let alone the risk that she will wobble in completely the opposite direction. Still we don’t have any challenging behaviour (I know some people hate this phrase but I can’t think of what else to call it) and for that I am truly thankful – I don’t know how dad would cope if she was distressed or aggressive. Still, it is likely we’ll need to think about residential care at some point – just not sure when…

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