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.

 

 

A new Dementia Arts group

Oh I have been busy recently.  From the initial funding and group set East Durham Creates of Silk Painting for people and carers of dementia, additional funding has been found to continue the group which we are now calling Making Art Time.  I say funding was ‘found’ but it is never as simple as that is it, Nicola from The Barn at Easington has been the most wonderful advocate for our group and she sourced the funding for us.  Her hands on approach to art is amazing and addictive and we have been immersing ourselves in creating from nature.   With walking in the Dene (woods) collecting leaves, berries and anything that takes our eye, reading poetry whilst sitting on fallen trees, we have embraced natures peace in our dementia journey.  

For me it’s quite spiritual being in a wood in autumn when the leaves are a mass of reds, golden with a variety of browns and greens.  There is a wonderful silence that you can only experience in a wood or forest, with occasional natural sounds of cracking, shuffling and a bird or two singing.

One day we created shapes and pattens on the floor of the wood amongst the trees using moss, logs and leaves; skewered coloured fallen leaves on broken twigs and hung them amongst the brown branches.  

It felt like being a child again.

In January our group is creating a wall banner of mixed media, representative of the group.  

The most important thing is that I love going to this group.  It is not noisy in the sense that it could be overwhelming.  We talk, laugh, exchange thoughts, ideas and most of all we understand each other.  It is comfortable to be amongst company who may need to ask what day it is, or what we did last week, or who is picking us up.   

 

One of my last rose heads, with sea glass leaves and seeds arranged and preserved in a layer of bees wax.
An arrangement of wax dipped autumn leaves and berries collected from woods, with a pigeon feather.  Mounted on a round slice of branch originally used as a prayer message (written on underside) from local church.

An arrangement of wax dipped autumn leaves and berries collected from woods, with a pigeon feather.   Mounted on a round slice of branch originally used as a prayer message (written on underside) from local church.


This is a piece of textile are that I have done at home.  It is a leaf hand sewn onto hand dyed cotton.
Needle weaving to complete damaged edges on the leaf. Seed stitch around edge, with a two spot ladybird.   It represents my dementia with the holes in the leaf repaired. The seeds around are memories which are scattering but not yet gone.