Please forgive me for highjacking my usual Frugal Friday post for a different post today, but I am so cross I just need to speak.
As you are aware My Dad suffers from the incredibly distressing disease Parkinsons.
He deals with this with grace and dignity.
He never knows from one day to the next if he will have a great day or a bad day. He cannot predict if he will freeze and be unable to move for periods of time or not. He takes regular medication to help these symptoms, but due to the nature of this disease these do not alleviate all or sometimes any of the symptoms.
He lives life as best he can with this condition. He chooses to go out and often face judgement from people who perceive him as drunk or uncommunicative. However, he perseveres, otherwise what quality of life would he have if he was forever shut away from others and the world. He was a University Lecturer , used to communicating and mixing with people constantly.
He has been attending a group known as "Age Concern" each Friday where he can mix with other older people who struggle to get out. He enjoys these days, takes his instruments and joins in with activities that are provided. They are able to give him his medication at his regular times.
We pay for this privilege.
That is until earlier this week, when we received a letter telling us that they were terminating my Dads invitation to attend Age Concern because of his condition. They perceive it is too distressing for him to be seen by others when he freezes and too distressing for others!!
What a load of rot.
If my dad was distressed in any way by what others thought of him, he would never, ever go out.
As for the others, each one of them has a condition that determines their attendance there. How dare they discriminate against someone with Parkinsons because the symptoms are more evident.
The nurse ( yes she is a qualified nurse ) says that they are unable to give extra medication to alleviate his freezes. This just shows her ignorance of the condition. You can give medication when he freezes, it may or may not help. If I had the secret to a magic pill to get Parkinsons patients moving at a moments notice I would be a very rich lady! The best thing to do is to allow him to sit quietly until it passes. All Parkinsons patients have phases that they call "on" and "off" . You can tell just by looking at him what phase he is in. A qualified nurse should be aware of this. I would have been more sympathetic if she had said " I'm sorry, but I just don't know how to cope with his condition."
I don't argue that he is sick and does need care during the day . This is why my Step Mum so values services such as this that provide some element of relief for the constant care that she single handedly provides.
The letter we received is appalling in it's discrimination and lack of understanding and my Dad is understandably mortified. We shall not be keeping this letter private.
A copy is being sent to the paper along with my Step Mum's reply.
It is just not fair.
The limited activities that he can enjoy without us around are gradually being taken from him. He has been given two weeks 'notice' to leave and I am taking him there today so he can say his goodbyes to the friends he has made . I have a few words to say myself , although I shall be restrained in front of my Dad . I don't wish to add to his distress. Enough is enough....