Tuesday, 14 February 2017

What's Eating Gilbert Grape?

Unfortunately it's not Mrs. Grape.

If you were to inquire why recent posts seemed to be getting more laconic, sardonic, and biting, even to the point of damaging relationships, up until recently I would have come up with some as equally biting and cleverly cynical reply.

However, having had some further time on my hands recently, I had become aware of an underlying black anxiety and sadness, and a piece of advice a good friend gave me this time last year was resounding and rebounding around my head.

'Don't underestimate the amount of stress this will put you under.' he said and I nodded solemnly and did actually tuck it away and maintain awareness.

The 'this' he was referring to was the news that my mum, as you may have previously read, was diagnosed with Alzheimer's disease about this time last year.

Having spent a good portion of time last year helping arrange the care and life changes mum needed, and being gently mindful of my career and finances, once mum was sorted in her wonderful new home, I thought that was the end of the stress my friend had warned me about.

But having only worked 80 hours in six months and having just not been able to get my shit together for that next contract, I started to wonder what was going on.

Sure I haven't always left bridges totally intact after every contract, fair point, and sure it really does look like there is no contract market in Canterbury in the IT portfolio, programme, and project governance and management space, and OK we've just been through the Xmas/NY contract lull, but that shouldn't have prevented me finding work in Wellington or Auckland - or even Ausy by now.

Something was going on, something I didn't want to acknowledge.

My mum has Alzheimers and it is a time-cosuming and energy-draining devastation, and I can't face the fact that to actually work in the area of my chosen career, I will have to move cities again.

I freely admit during the arrangement of her Advanced Care Plan, the Enduring Power of Attorney, the Health Board assessment, finding a care facility, moving her in and basically closing out her life (seriously it was like handling a deceased estate), that upon any day when these activities were taking place, a bottle of red may have also been consumed the same evening.

What I didn't want to admit was that, after she was settled and on any day I went to see her or helped her with something, I was coming away feeling that grim emptiness that watching someone's brain melt before your eyes inevitably brings, and a bottle of red was continuing to be consumed.

So at present mum rates about a 3.5 on the above scale as I've noted that the duty nurses have begun to help mum with some of the tasks associated with 4 above, not because she can't do them physically but because the confusion and memory issues are effecting her ability to understand them without an associated routine.

The weirdest thing is that mum can have good days and bad days. Family members have even indicated that they don't understand why she needs to be in a home at all. They occasionally visit her, which triggers her remaining memory facilities, she puts on her best 'face' and she's as right as rain, for an hour or so.

Spend any longer with her, try arranging a basic life task like shopping or see the gradual decline over regular visits, and you end up with a different picture.

The picture that fortunately for me as her EPA, is supported by the doctors and that CT scan. The CT scan doesn't lie, so I don't have to argue with family members - which is a bonus.

CT Scan examples of Alzheimer's.

Lots of people ask me if mum's got dementia to which I reply 'Yes, she has Alzheimer's.' leading to much confusion.

So here's the deal, Dementias are a set of symptoms and behaviors caused by many brain related injury's, diseases and in some instances, old age.

CT Scan examples of Alzheimer's.

Alzheimer's is a specific disease which will cause dementia.

It is a build up of plaque in the blood vessels of the brain which prevents blood flow, leading to areas of the brain atrophying (purple and black areas in the scans above). As areas of the brain atrophy so to the relative brain functions begin to degrade, leading to dementia and ultimately death. That's right Alzheimer's is terminal and currently without cure.

In laymen terms its 'brain rot'.

What people also aren't probably aware of is that from the time of around 3 on the timeline above, the sufferer needs a good deal of support as the ramifications begin to hit home and the frustration continues to build.

I get about one or two calls a day from mum and at least one call a week from the home. Sometimes I get up to three calls a day when she forgets she's rung me.

Mostly her calls are about seemingly trivial things which are 'all important', as the underlying anxiety and need for support, resulting from the confusion she increasingly feels, are projected onto these everyday things.

Sometimes its about maintaining her dignity in a personal matter she isn't ready to share with the home staff.

This is all good with me but what's going to happen if I have to move away for work? On the other hand what's going to happen to my career if I don't?

This is what's eating Gilbert Grape. That right right there.

My friends and family are saying its a no brainer, I should move, but I can't stomach the fear that mum would basically be left alone to cope.

I am torn and the tearing is causing such a black-hearted, frustrated, cynicism that the term 'grumpy old man' just doesn't cut it, fluttering about like a trapped bird in a cage.

Putting relationships on hold because I don't know where I'll be in a year. Firing off expressions of interest nationwide for shit I don't really want to do, but still holding out for a non-existent Christchurch based role. Then realising that I'm completely out of time and money. Then getting one of those calls from the home or mum, requiring, normally, immediate attention.

Tough times - meh, don't shed a tear for me, I don't have Alzheimer's, but if you're unfortunate enough to have a close friend or family member be diagnosed with Alzheimer's, do take my friend's advice.

Do not underestimate the amount of stress it will put you under, otherwise you'll end up writing increasingly negative blog posts!

And in reading back over several of them I can mark the time that my positivity went south... right after the 'Stuff I'm Grateful For 2016' post - actually during it by the looks of things... 😆

Fact is I'm not grateful at all, trying to put a 'good face' on things, grasping at straws and silver linings, surely a practice of the inane and emotionally retarded.

Its led to me blaming the lack of work, sorry state of Christchurch, friends, family, colleagues, society, and even that idiot Trump, for my increased negativity and situation, anything but the thing actually causing it; a likely random selection of - possibly but probably not hereditary - causality streams leading to a family member developing Alzheimer's.

"It is a uniquely devastating disease, not only destroying memories and cognitive capabilities, but robbing victims of independence and joy. For families, caregivers and society at large, Alzheimer's and related dementias are emotionally and financially ruinous. There is neither a cure nor a means of slowing the progression. Cases of the disease are skyrocketing." Jill Lesser and Trish Vradenburg

Alzheimer's - it just sucks balls!

So looks like I've got some tough decisions to make over the next week or so - gah!

BTW, please put the word out: I will manage multi-million dollar IT portfolios for food. 👍😃

Image Sources: http://Scienceblogs.com, http://belairecare.com

1 comment:

  1. Mate! I hear your dilemma. Eat, or look after Mum. I can't really offer any solutions (perhaps a sickness/carers benefit, if there is such a thing?), all I can do is offer my support in any way. A game to get your mind off things for an hour or so? Even just a break for a coffee or whatever. Just let me know, I'd like to help...