@Letti0
Letti, I am sorry you have had to go through that. Take a bow for fighting your way back girl....you must be one incredibly strong person!
I have been a support person for over 20 years now, although mentally I have been a support person since 1976. There was no positive diagnosis for Multiple Sclerosis until the MRI was introduced in the early 1990's. Prior to that the medico's were treating Ade for Panic Anxiety disorder which saw her addicted to minor tranquilisers which they continued to doll out as though there was some sort of incentive prize for prescribing 'Benzo's'!!
She ended up in a drug rehab facility to dry-out from the effects of Valium, not taken of her own accord, but 'stuffed' into her by the medical profession....."take one of these every 8 hours or as needed".....I'm the doctor, you're the patient!!
I bring that up Letti, because, we have had the best part of 40 years to study 'disability' issues, and to be honest the handling of them was better before the 'experts' became involved. Back in the old days people asked what the disabled wanted and proceeded to provide it! Now they have this set of guidelines and provide what they think the disabled wants. Nobody asks any more.....and accidents happen!!
As far as the house is concerned Letti, we are well set up although Ade is to the point where I do need respite and some of her time is spent in a facility. Things work OK here but, being somewhere else is a different story!
When she fell in the shower the other night in the resort villa, I was asleep, and it took her twenty minutes to crawl from the shower to the bedside and wake me. That is not just hard on her, it's hard on me too Letti. And this illustrates why I am not capable of providing the full time care I should! As it was she just gave herself a rather large bruise....what if she had hit her head on one of the metal fittings and needed hospitalisation....while I slept!
I have managed to turn around a few practices here by the MS society. Once again these organisations are run by non sufferers and they do not know or understand what goes on in the mind of the sufferer! We started going to the support group meetings and a few things struck me as being downright wrong!
1/......When you 'walk' in through the front door of the MS building there was a half a dozen wheelchairs there by the door for the more advanced sufferers to use. When you, as a sufferer walk through that front door the last thing you need to see is your destiny, where this journey is going to take you! So I got them to install a curtain to hide the wheelchairs! They are still there Letti, but they are now hidden from view. Nobody ever thought of it before, because they never had to!
2......It became my experience that those support group meetings focused on the worst sufferers! Those that had the most experience with the desease but the least amount of time left! No MS sufferer needs to see where they are going, they just need to know how to best handle where they are!
So I had those meetings spit up into assessment levels so that sufferers felt more comfortable with where they fitted into the overall MS jigsaw!
Sorry Letti, I should not blow my trumpet here but it is hard to see this **bleep** of a desease progressively build a wall of isolation around the one I have loved for all these years.
I could design and build disabled facilities like a bloody champion...but what do I know, I am not an architect or an academic......I am just a humble carer!
Love your work Letti, you are turning into a great contributor. I hope your time here is not a fleeting visit!
Cheers.....Rob