mind games...the dementia lottery

on Sunday, January 29, 2012

I went to Newcastle on Friday to take my mum to her first appointment with the geriatrician. Some of you may know that dad has been diagnosed with dementia (in the mild category thankfully, at least so far) and my sister and I have had some concerns about our mum, especially since her surgery.
The good news is that mum only has “mild cognitive impairment” on the clinical dementia rating scale but there is a 50/50 chance of ‘crossing the line’ and joining dad within the next 12 months. Worrying, and she will be closely monitored by her doctor, but let’s take the glass half full view at this stage and hope for the best J
I suspect that in the next few years I am going to learn a lot about dementia. In a delightfully ironic twist, I have been doing some strategic planning work with people involved in dementia training for the health profession, so I have access to a mountain of information when I need it! 
Parents get old (if we’re lucky) and time and age can dull their senses and lessen their mobility. That’s normal. I am beginning to see firsthand that old truism about the parent becoming the child, and vice versa. This doesn’t bother me. In many ways I see it as an opportunity to repay my parents, to look after them as they’ve looked after me. As best I can at least. For the problem is this: I left home at 17 and I’ve never lived in my home town since. I've never lived closer than I do now. My holidays haven’t been spent in Newcastle, or rarely, so extended periods of time with my parents have been few and far between. Filling out the questionnaire at the doctor’s surgery was difficult. The checklist about changes noticed over the last 10 years was much easier to answer than what’s the last week been like? The simple answer is I’m not sure. There is only so much that a phone call or reports from neighbours and family who live closer can tell you about what’s really happening. And with a five hour road trip each way, weekly visits are simply not possible...not without me ‘running on empty’ (which was playing on the CD as I made the last trip!)  My sister lives in Perth, much, much further away than Canberra. We are faced with the ‘tyranny of distance’ in a very big way.
We have done what we can to put all the possible services in place to assist. The geriatrician knows where to find me and I'll be copied in to all correspondence. Power of attorney and enduring guardianship papers are being filled in. They are still very capable of looking after themselves at home (mum especially) but this will obviously get worse over time.
Does anyone have any experience with looking after parents who don’t live close by? Can you give me some tips, some strategies to make it seem a little more manageable? I’m open to suggestions!  And surprise, surprise...no, they won’t move!

p.s. they'll turn 83 and 88 in a few months...they look good for their age don't they!