Friday, 8 February 2013

Simply Heartbreaking

My Dad


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....

It is simply heartbreaking.

24 comments:

  1. Oh this is so terrible do not let this happen stand up for him. Age concern seems an ironic name considering how they have treated him. My mum has recently been diagnosed with Parkinson's.

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    1. You are so right - their website talks about equal care for all too! So unfair. We are fighting this and making it known! X

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  2. Oh my goodness what a heartfelt post. So sorry to hear of this and I am glad you are taking it further - I would never have thought any kind of discrimination occurred within an organisation such as age concern. Good luck & best wishes x

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    1. Thank you so much fro your kind comment - I was utterly shocked too!

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  3. My God, the injustice of this is just overwhelming, I'm speechless & heartbroken for you & your Dad & step Mum. I really don't know what to say, I hope you can get somewhere with your response although I know the harm & upset their letter to your Dad caused cannot be undone. It's just awful! Martina xx

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    1. You are right - the damage to Dad is done - he doesn't now want to return again after today. He is confused and thinks he has done something wrong. He doesn't understand at all. Xx

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  4. It is heartbraking and infuriating! I am apalled by the attitude! "Age concern" my a@#$#!!! Don't let them discrimante against your father. Fight it all the way, just like he fights it every day!

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    1. You have hit the nail on the head with that - he does fight this everyday. It is a fight for him to get from one place to another, but he does . We have to fight for him - when you see how hard he tries and how much he cries over things like this. Their attitude stinks.

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  5. Oh Claire this is appalling and distressing in equal measure. What are Age Concern thinking of???! Have you contacted the Parkinson disease association to get advice on this? They may be able to intervene, but I am sure even if they can sort this mess out, your poor Dad probably doesn't want to attend somewhere were he feels like a second class citizen. Parkinsons just needs time when you have a freezing period or using distracting techniques when going through doorways and it sounds more like this nurse and other carers don't have the patience/time which is unacceptable when you are paying for this service as well! I wish you all the best in resolving this horrendous situation.

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    1. Thank you Kay - you are so right! It takes time and patience - they aren't prepared to give it so blame it on Dad losing his dignity being seen when he is frozen. Appalling behaviour, but he doesn't now want to return. He thinks he did something wrong and is uncertain and confused by their rejection of him. A good idea - my Step Mum is on the committee of the Pakinsons Society down here so I'm sure she will take it to them. It is just so frustrating.

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  6. You such an incredible daughter, I hope you know that.

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    1. Thank you - I don't feel I do enough and can never protect him like I want to. X

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  8. The name "age concern" is a bit concerning... I feel so sorry for your father who made all the effort he can to lead an indepent life and then that behaviour. It is disgusting. I have to admit I would not let the case go, I would be a "troublemaker". I am not good at that when it concerns myself - but if someone I love is badly treated, I have to step in. I am glad to read that you seem to be handling the topic in the same way. Contacting the newspaper is definitely a good idea. Perhaps contacting a local councillor as well? Good luck to your dad, your step-mum and yourself. Keep us updated, I am so cross since I read this this morning...
    Take care,
    Nessie

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    1. You are right - and I won't let it go !! He can't fight for himself any longer so we will . I can't not speak up in situations that are unfair and unjust and my Step Mum is 100 times more vocal than me!! Thank you for your comment! Xx

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  9. So horrible that people have to go through this...just not right. I wish there was a cure really. I'm really sorry, I hope he has more good days than bad ones as I know it can be so hard to watch for those around him. Lots of love to you xxx

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    1. Thank you - Some are good , some are bad. Xx

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  10. This is absolutely appalling, and I can't believe that the kind of people you would expect to be the most understanding are the very ones who are discriminating against him. Don't they feel ashamed!? I certainly hope they do.
    I'm so sorry that this has been taken away from your father. I hope that he is able to find a new group to enjoy his time with, and one where he will be made to feel welcome and will be treated equally.
    Good for you, sending the letter to the newspaper. Things like this make my blood boil.
    Mel x

    melswallofmirrors.blogspot.co.uk

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    1. Thank you for your words of support - it is appalling and in so many ways we are powerless to do anything, but I won't keep quiet! Xx

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  11. Hi Claire... What is happening to your dad is absolutely appalling! My mother in law passed away from Motor neuron disease so I can relate a little to how distressing it can be for all the family when serious illness is involved. I really hope he is able to get some other outlet where he can look forward to spending his day.
    ~Anne xx

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    1. Thank you Anne - I am sorry to hear about your Mother in Law also. You are right , it is so distressing and we won't be taking him where he is not loved anyway. We shall look elsewhere - hopefully find him something as he still has the ability to enjoy life at his pace and shouldn't be denied that by this discrimination. X

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  12. I'm sorry Claire I don't know what to say - it's outrageous - how can Age Concern be so discriminating and how hopeless must your poor Dad feel? Really I'm shocked. I hope you manage to take this much further and get some answers xx

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    1. Thanks Jenny - it's a really emotional time! I just feel helpless seeing him treated like this - you are right it is shocking! Xx

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