Feeling….stressed, despondent…but still wearing positive pants

th-2There are days when I feel I can no longer compete with organisational ‘experts’, with regards to what’s best for me and other people living with dementia.

That I can no longer stop others from deciding what us people living with dementia need, or want to fit their ‘brief’.

I get upset at how what I am saying, or my voice, is being blown away on a wind of ‘organisational’…I am sitting here trying to think what word to use but can’t quite get it.. constrictions, not fitting an organisational brief..

I am a strong advocate for people living with dementia to live with the positiveness of CAN DO.  Of overcoming the fear of their diagnosis and trying to do as much as they are able and then, going beyond that.  Having a say in what they want, what they will accept others doing for them, having a voice that is heard.  Trying something new, revisiting something they used to do.  Adapt what they want to do in a way that they achieve more than they thought they ever would.

The saying “There’s no such word as can’t” is so underrated.

At this point I had written a lot of why I was writing this and then realised that it was the wrong thing to do.  So what I will write instead is what I feel is important for Society/Communities/Organisations to understand.

If you are living with any form of MCI or PLWD (Person/People Living With Dementia), it is import to keep going.  Before diagnosis people had their own autonomy;  do you want to?  how do you want this to be?  give us some ideas that you would accept…  and such like.    After diagnosis this should still be the norm for any organisation when they are providing for us.   Most people working in organisations that provide some service for PWD have training.  NVQ Level 2/3 in Dementia, Social Care degrees/Masters, or ongoing comprehensive in-house training.   But, this training can never take the place of the voices of people living with dementia.  Our actions, ideas or input should never put behind that of an organisation.

It is always worth reminding society that PLWD once had careers and backgrounds that may have surpassed anything that any dementia provider has done.   All careers from shop assistant upwards are vital roles, but it seems that when someone is diagnosed everyone forgets what they are capable of, so if they are making a suggestion or offering to do something it is of no small consequence, because they may just have more knowledge than realised.

I really don’t want to be told what I cannot do, because I can try to do anything I like as long as it is legal and will not hinder any other process.   I don’t necessarily always want to leave things to the ‘experts’ if I can do something myself.

My thoughts are to step away from a situation for my own wellbeing, but this isn’t about me this is about all people living with dementia having a REAL voice.

 

A Dr failing to understand Dementia, and the risk that poses

I had a disturbing appointment at my GP on Monday, one which I can’t quite get out of my mind.

I had a letter giving me an appointment for a “Medication Review”, okay, so this is just a review no need for my daughter to come with me.

I get into the Doctors surgery to be told this is a Dementia Review.  That is not what the letter says, I think but hey ho I have never yet had one of these before so I will go with it.

Dr C reads directly from the screen and I answer his questions.  They are short and succinct and not very useful to anyone really.

Dr C:   Do you have a carer?   Me: No     Dr C, mumbling to self ‘Oh there is not a box on here for not having a carer’       Failing number one, he knows me and understands I live alone and manage well.   Not all people with Dementia need carers for quite a while.

Dr C:  (he talks about this being a difficult question) Have you thought about an Advanced Directive, and DNR (Do Not Resuscitate) and have you got one?

Me:  Yes I have thought about it and I want DNR when the time comes, and I haven’t done one yet.

Dr. C gets a form out and starts filling in, ‘We can fill one in now’.  I answer general questions and he says that as my Daughter isn’t with me she will need to sign it, after I told him we had talked about it.

Here it comes…………..

Me:  Obviously I don’t want that now because I am fine.

Dr. C:  “This is an Advanced Directive for the future”

Me:  Yes, but I am not likely to have a heart attack now, my heart is healthy.  [I have recently had a heart scan and an angiogram and have been told my arteries are healthy and my heart].   And, I am capable of leading a perfectly happy life-style now. So not yet.

Dr. C:  This Advanced Directive is for the future 

He repeats this several times, and I am saying yes but not yet.  Then Dr. C says ‘maybe we can look at this on a yearly basis then’ and rips the form in half and places in the bin.

I am mortified.  I am more than that.  What just happened here?   This GP was suggesting, and filling out a form so that I would not be resuscitated should I need be in the near future, in fact it could have been next month even.  I have no intention of doing this until the time is right when my dementia is advancing rapidly.

What is scary, this GP appears to have no idea about Dementia at all.  The more I think of it I am very concerned that Dr. C could be a danger to patients.    How can this be happening today when there is more knowledge about Dementia than ever.  I realise now that even though when I ask him to explain things because of my dementia he just doesn’t get it.  He will just say the exact same sentence, so that I have even told him that repeating himself doesn’t mean I will understand any better!

I am changing Doctors rapidly because what if, that form had not been torn up and I was taken ill next week and needed resuscitation?  Obviously this is not the only reason, there are others that are equally worrying.

 

 

Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.