Friday, March 23, 2018

What happens when I get too old?

It's a question I wake up at 3am and wonder about.  And I think this is a question that many of us older parents have started to ask in earnest.  Let’s face it, most of us have been around the PW world for 30, 40 years, maybe even longer depending on our now-adult son or daughter's  age.  When you stop to think,  PWS wasn’t really acknowledged until 1957 when it was described as a condition with a short life-span with major obesity problems, and very little good management procedures.  Knowledge  didn’t really take off until the internet took charge some 30 years later.  Many of us were the generation that forged the PW-pathway, stumbling over rocks and boulders, tripping over roots and blindly turning corners as we went.  So many of our kids didn’t have the benefit of growth hormone treatment and with exercise being that much harder for them with their low muscle-tone, we faced a life of eternal vigilance of food and exercise.  Exercise and food.  And all the challenges that go with that.  It seemed like a lifetime imprisonment with little or no time out for good behaviour!  Schools weren’t really aware of the unique needs of PWS, families had a hard time coming to terms with their ‘different’ sibling, grandparents really didn’t understand, and as for any work placement – well, there was just so much that employers needed to put in place and provide that most of the time it was more often than not just put into the "too hard" basket.  

Our kids are living longer and that ‘short life-span’ that was always talked about 30 years ago has now disappeared.  With the right kind of information, support and management, there’s nothing to stop anyone with PWS from living a long and fulfilled life.  Except that we  parents are growing older, and we are growing tireder.  Although their life-span may be longer, their IQ and competency levels are not any more mature than they were when they were young teenagers.  Sons or daughters still living at home require just as much attention, chivvying, encouraging, as when they were little as that ability to do things for themselves is severely limited.  As parents become tireder and tireder, we ask what are we supposed to do?  We feel guilty if we are not doing the ‘right thing’,  providing enough exercise, enough vigilance.  Many of us can pinpoint illnesses that we experience to the care and worry of providing ongoing support for our sons and daughters: high blood pressure, fatigue, anxiety, heart problems, and more.  It is of real concern that we have a plan in place in the event of our not being able to physically provide care any longer.
Some countries have residential care, but little specialised (ie PW) choice.  Some have good residential providers, and in some countries this simply isn't an option.  Good caregivers can be few and far between.  Not every agency can provide what our 'kids' need and even if we find a good residential care placement, parents still worry and live with anxiety that things will go wrong.  As parents we don’t want to burden other children/adults in the family with the ongoing care responsibilities, nor do we want our adult children (PWS) to go into State care.  
Some of us want to be able to enjoy our last few good years!  We want to knock a few things off that “bucket list”, to travel, or to spend time with other members of the family; we want to go out for a meal, go to the theatre, visit friends, without having to make arrangements for ‘time out’.  
We are asking, what next?  Who will look after my adult child?  How will I provide for them?  How can I provide the management that they need, the exercise and daily walks, outings if I'm not physically able to do this?  And, when I die, how will they manage without me? 

As for me, well after a few 3am consultations with myself I spent some time with a lawyer who explained what I could do to prepare for the eventuality and hopefully in my country it will be enough.  

I really do need to start sleeping again!

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