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.

Getting involved

So, an update of being involved in Dementia action.

I am loving my new community, and who knew that the North East of England was so pro-active towards becoming Dementia friendly.   Not just pro-active but mega pro-active and I am loving being able to join and be part of it.

I have been very much welcomed by all I meet, and am excited for my future here to be able to be so involved.

Sunderland and Durham Heritage Coast:  I have already been to Crimdon Beach (which is absolutely beautiful and an important area for wildlife especially the Little Tern which come to breed there.  I have agreed (without any hesitation) to work with them helping make this part of the East Coast dementia friendly.

East Durham Area Action Partnership (AAP) –  I accompanied Belinda from the Alzheimer’s Society to a meeting where she did a presentation about the progression of dementia friendly East Durham.   I spoke about having moved to the area and how I was struck by the real sense of northern community and how it was important to encourage families caring for people with dementia to continue to make life as normal as possible and visit all of the places that are working hard to become dementia friendly.

Last week I visited Horden Welfare Park Vintage Cafe.

 This park has history to it and the park itself is a real gem to visit.   Originally paid for by the miners in the 1920’s it has one of Ray Lonsdales scultures called ‘Marra’ and depicts a miner after the pits were closed with his heart ripped out.  The cafe which is inside the park, put on afternoon tea and a walk around the park with a talk of its history.  Staffed by volunteers it is delightful, china teapots, cups and saucers, plates and delicious cakes and sandwiches on vintage cake stands.

A vintage cake stand

Me, being gluten free and not letting them know before hand, wasn’t able to eat any, however, they made me a salad not taking no for an answer!  How lovely of them and it was delicious too.

Upstairs they have created a small museum of Horden which is absolutely fascinating.  They have created a couple of rooms with furniture showing life in the miners cottages.  And the photograph collection they have is immense.

These are the local places which are making real efforts to become dementia friendly and will become a superb place for afternoon tea and a walk.

As I am working with these groups and getting to know the area the more I see how much there is to educate the community of families who have always cared for each other.  It is so easier for a family to do everything for someone and in that way they lose their independence and in a sense, their self.   Education about how important it is to continue to help a person living with dementia to keep doing as much as they can has to be the way to improve dementia friendly communities.   Take the person out for an afternoon locally many places and cafes are dementia friendly and a walk a cup of tea can brighten up everybody.  Find groups that someone with dementia can go to independently so that they get the chance to do things for themselves.

I think at some point I will give my take on carers another time and how helping their people to join more things and get out and about can actually help them as well.

Remember, as always these are my own thoughts and opinions.

🙂

 

Dementia Action Week – taking part day 1

It is a busy and exciting week, this week.   Dementia Action is all about getting communities to pledge some action towards helping people living with dementia to be inclusive in the community.

Today Monday 21st May 2018, our first day locall; Cineworld in Dalton Park, County Durham had a dementia friendly showing of The Greatest Showman.   Which was a brilliant film I might add; the music was wonderful, and all the people I asked as they were leaving enjoyed it immensely.   The music was memorable and definitely worth being played in any care home for their residence to enjoy!

So what changes did they have to make for a dementia friendly film showing?  

Lighting:  Well, they left a minimal amount of lighting on during the film.  This didn’t make any difference to the quality of watching the film, in fact I didn’t really notice it, but it was comfortable if you needed to visit the toilet during the film.  Also for people with dementia it meant that there was not a scary blackness around you.

Sound:  The sound was lowered to an acceptable level.  All too frequent the sound in a cinema can be so loud that it is quite traumatic for people with dementia, and also for people with any autistic spectrum.   It was not so low you couldn’t hear what was being said, but was comfortable and loud enough for the singing to wonderfully uplifting.  Music is so important to people living with dementia, they may not speak, or appear to respond but give us wonderful musical and you can reach parts that you never knew were still excited by such sounds.

Time:  the film did not start until everybody was ready, seated comfortably and happy for it to start.  No, this did not really take long at all, and we all waved to the guy in the box at the back running the film:  and he gave his thumbs up – what a perfectly British acknowledgement that there is someone working in the back!

Being Comfortable:  Being a dementia friendly showing, it was fine if anyone wanted to  talk during the film,  Maybe they were remembering a time when they sang or danced and wanted to talk about it to whomever they were with.  It was fine for them to do so.

In the foyer some of the ladies asked for tea, not fizzy and popcorn but a nice cup of tea!

At present the floor in the foyer is a very shiny sparkly black polished granite type of flooring and there are several red florescent strip lighting overhead, which is supposed to reflect on the black…. heck I felt I was on a rolling boat as the red reflections appear to roll along as you walk.  Very show biz!! but not very dementia friendly.  However, they will be rolling out a red carpet along the floor, I presume for days when they are showing dementia friendly films.  Who on earth are these architects with their heads in the clouds or worse…

Cineworld at Dalton Park has really tried hard to accommodate all the people living with dementia and the manager must be commended for being so accommodating.  Hopefully this can be a once a month event for all people with disabilities and dementia.

I got to say a few words and was so pleased to see so many people with dementia enjoying this wonderful film.

So, this was my first day in supporting dementia friendly events in my new local community, and one which is one that is becoming more dementia friendly.

Tomorrow is another event….

Gill x

 

 

Is dementia fascinating in its development? Maybe.

Bizarrely I have developed an obsession with counting fingers and toes.  I know a bit weird eh!   It’s just that when I see a picture of people or animals hand or feet, they look like they have far too many digits on them!   This is only when I see pictures mind you, not real hands or feet, or I don’t think so…no, I don’t usually focus on peoples hands..but I do focus on cats paws now I come to think it!

What is this about eh?  I can’t just think ‘that’s a nice ordinary looking pair of feet’ , I actually have to count the toes, or fingers.

Far too many digits here!

Some might say, what a load of rubbish, what has this got to do with Dementia.  Answer, probably nothing, I have no idea.  I do know that I have not spent my life counting fingers and toes and this is new to me, this compulsion.   Why I thought to write about it was because it made me think of fiddle blankets.

It makes me wonder whether the change in the brain that makes some people with dementia more comfortable with keeping their hands busy with buttons and ribbons and the such like has any link to me needing to confirm that what I am seeing (fingers and toes) is just fooling me into thinking there are more.   Okay I understand that it could be more to do with anxiety but that’s not how it feels to me.  I don’t feel anxious about it, just curious about the illusion that I am seeing more than what is real.

So, I still have no idea why this has become something of a ‘thing’ for me right now but I think I might make myself a fiddle blanket for my future and maybe put some fingers and toes on it to count!!

Dementia is more complex than most people realise.

🙂

 

 

Cat cuddling…

I am in great need of cat cuddling this morning because I am falling into a black pit of  despair.   I cannot stop the tears leaking from my eyes so am smiling.  Did you know smiling increases the ability to lift your spirits through….lets just say the effect of smiling has in the brain lifts moods.   Is it working?  Not really although I realise I look somewhat mad smiling through tears hold tight to my cat, who is loving it.  She loves a good cuddle and her ‘motor’ is running on full right now – yes even whilst I am typing this, tucked under my arm her paws on my laptop.

This morning I am realising the enormity of my situation.  No bathroom and I can’t find any practical help.   The well meaning questions of have you contacted…such and such is not really helping.   15 years ago I wouldn’t be in this position, I would never have given my money over to a builder before they had at least done a good deal of work.   But, having dementia means that your brain is seriously compromised.  Just because I look and sound fine, well more than fine really, the hidden part of what dementia does to you is missed.   Like how can you tell if someone is telling you the truth or not?  How can you tell if what someone is saying is ‘joke’ and not meant to be taken seriously, how can you tell if someone is conning you or not?    I can’t and it quite frankly terrifies the pants off me because you need these skills to make every day decisions.

So what I want is practical help.  Someone who can do some hand-holding through what I need to do next.  Someone who knows what to do and why it needs doing.     People keep saying about how this organisation or that have given them practical help so I want to know ‘how did you get that help’?    Here I am, no money, no bathroom and I cannot find anyone who does anything other than say you need to do this or phone this agency.  Age UK don’t offer help apparently so they tell me, Citizens Advice Bureau offer advice, Alzheimer’s Society…don’t get me started on that one.   So, what I need to know is WHO can give me some practical help of what to do?

Most of these charities, have now stopped giving practical help and have chosen to focus on advice.  Well, advice to a single person who is trying to sort something out alone is  absolutely worthless when they have dementia.  What we need is someone to sit with us and ‘walk’ us through what to do, perhaps give some help on that, stage by stage.  Give support, practical support.  Someone to tell you “it’s okay we will sort it out”.    

I hate dementia.

Going back to cuddling the cat.

Rant over.

Simons Cat does it best….simons-cat-channel-frederator-network

 

Food, dementia and me

Whilst my brain seems to be remarkably good still, other things about my dementia continues to ‘trouble me’.  When I say trouble me, I don’t actually mean they trouble me, I mean they are not quite normal for people in general.

I think food and eating with dementia is a very complex thing, much more so than people realise, especially when you live alone.  The usual questions at the GP or Memory Clinic appointments are:

Q.  Do you cook for yourself okay?      A. yes

Whether or not I finish eating it or not is another matter, or indeed whether I can save some of the excess to keep for another day.

I still don’t get hungry and have to look at the time to see whether I should eat or not.  I could quite happily go all day without food.  On average I would say that half the time I have one cooked meal a day and nothing else, the other half I manage to get a Gluten Free sandwich or snack at lunchtime.  There lies another problem being Gluten Free I don’t always have any bread and everything else is a poor quick snack substitute so I don’t bother. Regulating how much I eat can be tricky sometimes, especially if there is something I really like the taste of because I just want to experience that taste till whatever it is has all been consumed.   For instance I cooked a ham joint and wanted to finish the whole thing because I like the taste, I did manage not to though !    A lot of food has lost its taste for me and things I used to enjoy seem..tasteless and I can’t really be bothered to finish eating something that doesn’t have that – taste appeal.

Drinking enough fluid can be a problem although I try my hardest to drink a fair amount of water and other drinks, weak coffee or fruit teas, throughout the day.    It is, for me, something that it a conscious effort I have to make.

So when you ask a person in the very early stages of dementia if they have eaten, or are they okay with cooking for themselves fine, understand that the answers are far more complex than the question.

Note:  I am not managing to lose any weight so I am definitely not starving myself!!