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.

 

 

Dementia and a visit to the Doctor

Having dementia means I now have to push myself to do things, but recognise when I need to step back and say that’s just too much.   Am now having some tests done for Angina, which has stunted my physical activity for the present.   I just hate it when my body throws me a new problems to deal with.
This has been a long standing problem, and 16 months ago was diagnosed with asthma which may have been incorrect.   I realise that I find it extremely difficult to explain symptoms when visiting my Doctor so have recently been taking my daughter with me.  She tells me I give too much information which can confuse things because they may not be relevant.  It is that difficulty, to sift out what should be said and what is not relevant that eludes me at present.  I need to plan out what exactly I will say when I go to stop overloading my Dr with information!!
It is a help to take my daughter though because my Doctor keeps asking “how long..” and I have to answer, “I can’t tell you because my sense of time has completely gone”.  Still he asks that question, so my daughter steps in and says what she knows.  So, it is a lot less stressful to have someone who is close to you at an appointment.
Being able to be concise is something that gets more difficult with dementia, and not being able to describe something is a real problem.  Think about when you have a pain, how does it hurt?   ache; sharp; sore….it can be more difficult to describe when you have dementia.
Also, I may have a pain but unless the Doctor asks me if I have a pain, I have a tendency not to say.  Why? I don’t know, I just don’t.   My ability to offer the relevant information is sometimes lacking.
I think one problem is that I hate going to the GP Surgery.  I really don’t like having to take medication, although I will if I have to.   So when I do go, I may have a couple of things that have been niggling me a while and Doctors these days only like you to talk about one thing during one appointment.   The way my mind works is that most ‘illnesses’ have more than one symptom so if you can’t give a list of symptoms how can a doctor diagnose you correctly?   I get breathless, my inhalers don’t work, when I get breathless I keep losing my voice totally.  It sort of feels uncomfortable in my chest/neck/throat.  My Dr tells me that he will deal with my loss of voice another time but what if it is connected.  What if I think that I can no longer tell them all of my symptoms because I think that it is too many?  I have fibromyalgia I am always in pain, so won’t say that I also have pain.  I get pain in my arms, my shoulders, even across my chest so I am now confused as to what pain belongs to what.
With my dementia I am beginning to feel I should make allowances for others not understanding the intricacies of my behaviour and speech, but actually I realise that I’m wrong, it is not me who should make allowances it is others who take these things into account.
Of course Doctors are trained to talk to people with dementia aren’t they?  Sadly it seems a many need training.   All the staff in Medical Centres should become Dementia Friends; have training.  What is missed or misdiagnosed I wonder because someone with Dementia cannot tell you or explain if they are feeling unwell?    Having said that, I know that there are some superb Medical Centres/Surgeries. Doctors and nurses around, but not in every areas of the country.

 

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.

🙂