(In)dependence soul searching

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Most of us want it, countries celebrate it… independence.

As we learn in life there is not really such a thing as 100% independence – we share with others – but there are lines which denote degree of independence and lots of people have a high degree of independence.I have crossed so many and one more came yesterday.

One year ago I would describe myself as pretty independent in many ways – ways most of us don’t bother to think about.

Yesterday I got an approval from the government that I qualify for a full-time carer from abroad and we are moving forward with plans – although it is a whole process.

It is a big step for me – the move to ‘being cared for’ – and a totally logical one. I find getting around difficult and dangerous as increasingly are tasks related to getting dressed so it makes sense. I have always maintained that I don’t want my kids to play a part in this role and I truly welcome the enormous support a carer will bring to my wife…

But none of that makes it easy….

It is only a year ago I last ran 5k…. it is insane the decline and it keeps on going – at a pace consistent with and possibly a little ahead of the worst I had heard about PSP. Cognitively I am doing well but it is definitely harder to write these blogs now and this week I experienced more slowness than for a long time. This week’s analogy is an old iPhone.

It still works but it is increasingly slow, the software out of date and the battery charge goes fast. I get exhausted from the smallest things far faster than before and my body feels it.

I recognize that I should have a carer and that we need to do this but it is hard emotionally. I am learning to toughen up because there are more delicate choices right round the corner which by DNA I find very hard to accept.

Dependence is not fun and it is sad that at  just 50, I am dealing with this, but firstly I am lucky that I am dependent on the right people and retain a fierce spirit of individual freedom of thought and at times action.

We can moan, complain, deny or we can accept and in fact enjoy the benefits of the change – increased abilities to have help with increased activity and allow the family to have less stress (which is a win for me).

Losing independence comes to many of us – and for many it is just an illusion anyway – but it happens and we need to find a way to adapt and adjust. This is a strong message to myself because honestly I am finding this step hard. I don’t think this can simply be sugarcoated – it is tough but I need to deal with it and I will.

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Hello! I am Ben Lazarus

Originally diagnozed with Parkinson’s it has sadly turned into PSP a more aggressive cousin. I am 50 and have recently retired but enough of the sob story – I am a truly blessed person who would not swap with anyone on the planet, principally because I have the best wife and kids in the world (I am of course completely objective :-)). Anyway I am recording via the Blog my journey as therapy to myself, possibly to give a glimpse into my life for others who deal with similar situations and of course those who know me.

Use the QR code or click on it to get a link to the Whatsapp Group that posts updates I hope this is helpful in some way

One Response

  1. You’re completely right – it’s hard to sugarcoat the situation you find yourself in. There are some questions which nobody has satisfactory answers to. How much unanswered difficult questions bother one, is a function of personality I think.
    I like what you said here: “I am lucky that I am dependent on the right people”
    With all you have on your plate, there are blessings too – first and foremost that you have the most loving family…and friends who love you too. As someone who has been through a challenge not too long ago, I can say that I don’t understand how people without a circle of people who love them get through difficult times.

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