jmgoyder

wings and things

“Look after yourself.”

I used to absolutely hate it when people said this to me. Over many years, so many people have said the following kinds of things:

You need to look after yourself, Julie!

You should get out more, Julie!

You’re exhausting yourself, Julie!

You don’t have to visit Anthony every day, Julie!

You should sell the farm, Julie!

You should smoke pot, Julie!

You need to get a life again, Julie!

This sort of well-meant advice enraged me at the time, and I resisted it, but now I am beginning to think that maybe – just maybe – it is time to make a bit of a change. A friend visited Ants the other day and, when this friend asked Anthony how I was, Anthony said, despondently, that he hadn’t seen me for days. But I had seen him the previous day! Admittedly I haven’t been into the nursing home as much as usual due to the new puppy (who, having only just been vaccinated, can’t be taken anywhere until next Friday due to the parvovirus outbreak), but it was frustrating to find out that Anthony hadn’t remembered my previous day’s visit.

And this is my dilemma: on some sensory level, Anthony notices my absence and conflates the single days I don’t visit into several days, so feels neglected. On the other hand, I might be with him day after day and he will still forget and this is a cognitive/time issue. This is an impossible conundrum that I wrestle with constantly but, due to the puppy situation, I have seen less of Anthony than usual over the last month.

The fact that, despite his now advanced Dementia, Anthony has noticed my absence, is terribly upsetting for me. On the other hand, I am beginning to realise that I actually do need to care for myself better. But I had to come to this realisation by myself and not succumb to all the ‘should’ advice.

When Ants was home and Ming was little we had an idyllic little triangle of love for each other; it was magic and it went on and on, for years and years, despite the onset of Anthony’s many illnesses (including kidney cancer in the first year of our marriage).

I will never, ever abandon him and not visit, but perhaps it really is time to re-find myself, look after myself. If I can learn how to do this better, I will be more effective in the carer support groups I am helping to facilitate.

Look after yourself.

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Dementia and hallucinations

Yes, I am still working through past blog entries in order to formulate a book, but I keep getting distracted by the present.

I don’t think even the scientists know whether the hallucinations people with Dementia experience, especially those with Parkinson’s Disease Dementia, are part of the actual condition, or a side-effect of the medications.

Tractors pulling Anthony’s trees down; long-lost friends and family (some deceased) visiting; a multitude of strange children making mischief; a room full of calves and dogs; a pirate ship; the strange ‘teacher’; the terrifying kidnappers; the wondering where I am ….

….even when I am right there.

After the terrible fright of a few months ago, when I thought Anthony was going to die, he has resurrected and, in his own words, is “better now.”

This month marks five years that Anthony has been in the high care section of the nursing home. He has outlived all of his prognoses (advanced prostate cancer, advanced PD) by years; he has somehow survived liver disease and kidney cancer. The Dementia component has been there all along but has only become noticeable over the last couple of years.

Dementia is, of course, very confusing for the person who has it but it is also confusing for the person caring for the person with Dementia. Moments – even hours – of lucidity can sometimes be punctuated with such bizarre stories that the carers are at a loss as to how to respond.

Even me, who loves him so much. Even me.

Recently, I have become so tired: of pretending I have to go to work (as way of leaving); of missing him; of this never-ending grief; of wondering whether he is okay when I’m not there. I have had to let go of the latter for my own sanity but I still worry about whether he is too hot or too cold (these thermostatic problems were the bane of my life when Ants was still at home.)

And what about Ming – our now 23-year-old son? Anthony sometimes mistakes him for a nephew and doesn’t recognise him as his only child. I don’t know how this feels as Anthony always recognises me, even if he is confused.

Ming is often ‘seen’ by Anthony in the corner of his nursing home room – as a toddler – and this particular hallucination gives Anthony immense delight. So I go along with it; what else can I do?

Perhaps the trick with Dementia-induced hallucinations is to go with the flow unless the particular hallucination is troubling.

Me: Nobody is cutting your trees down, Ants!

Anthony: Yes, he is – just look!

Me: I think it might just be your imagination and the Parkinson’s Disease?

Anthony: You always say that.

Me: Do you want me to get Ming to check it out?

Anthony: He’s too little, Jules.

Me: No, he’s a man now, Ants, and he can fix everything!

It is perhaps the ongoing, repetitive loop of the same conversation that can sometimes exhaust the carer. On the other hand, it’s familiar territory and I love to insert a bit of humour into the same old conversation and can sometimes make Anthony smile by saying “Are you totally insane?”

Yeah, bleak humour can sometimes be useful when it comes to Dementia-induced hallucinations.

And I am, and will always be, grateful to Anthony for teaching me so much about this often misunderstood and complicated condition.

 

 

 

 

 

 

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