It is painful to see my daughter struggling with our stairs now, and for her sake and her safety I hope we are lucky, though of course there will be high demand for such properties and the neediest quite rightly will get it. It seems crazy that in this country which is considered one of the wealthiest in the Western hemisphere that disabled and elderly people are expected to wait over a year for a stair-lift to be fitted. I made some phone calls to a couple of well known companies, if you have the money, it will be ordered and installed within 4 weeks!! How the hell are people meant to cope for over a year if they are unwell and for example the only toilet etc is upstairs.
I've been thinking a lot about my future with Parkinson's too, the reality is that the time will come when I may not be able to give Gemma the secure and safe home she needs if my condition should deteriorate. It hits home that sooner rather than later I need to pay more than lip service to planning her long term future so she is happy, secure and leads a fulfilling and happy life. While this security is the greatest thing that I can do for her, it somehow doesn`t seem that way and feels that thanks to Parkinson's I've let her down. In fact being a carer and being active is in my mind a positive thing and as in my last posting it keeps the negative alien at bay!!
Today was a strange sort of day in which I semi planned my demise, or rather funeral arrangements. Now this may seem crazy as I'm only in the early stages of Parkinson's, but reading various forums to do with the condition, some people can deteriorate at a faster pace than others, and I have no doubt that most people with a long term health condition think about this. Parkinson's UK and I'm sure other such charities call it planning for a good death. Now yes, i know that is hard hitting and somewhat scary, but let's not be so frightened to think about and plan for what sure as eggs is eggs will come to us all eventually. By planning our demise and involving our loved ones with openness and honesty it will in the long term make it easier all round. Planning may involve issues such as making your wishes clear regarding treatments when we may not be in a fit state to discuss it, your funeral arrangements are clear cut and will be as you wish rather than leaving this burden to family, and they are clear about your wishes, and what I feel is most important, you feel ready to say goodbye when the time comes.
Now you are probably saying why the hell am I even discussing this, and I know it will scare some people, but the way I cope is to plan for these eventualities, because the last thing I wish on my dear son is to have to arrange all this himself, I would far rather he is free from worrying about paying for a funeral etc and instead is free to help look after Gemma at this time, and the whole process is as easy on them both as possible. To this end an 'over 50' policy (other policies are available) will more than cover the cost of a simple cremation, and this is linked with co-operative funeral care (others are available) who will soon have my wishes for music, etc etc etc on record for when the time comes to make the whole process as easy and painless and dignified as possible.
I hope this will be a long time ahead and I have many happy and productive years ahead but it makes me feel happy knowing I have done this and taken the pressure off my boy. In the meantime I just want to get this move out the way because I know physically it will take it's toll on me and with my boy working so far away I have to do it mainly on my own so need to pace myself..... not something i'm good at!!
Well I hope this wasn`t too upsetting for some of you but i would be interested to know if others have done similar for peace of mind. do use the contact form or email me on tjkernow@hotmail.co.uk
Take good care of each other folks and stay happy and healthy.
Tony
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