Yesterday was so hot and humid I felt physically and emotionally drained and did not even log on as it was simply too hot to cope with anything.
My dear older 4 legged friend opened a cut on his face which bleed profusely all over everyone and everything and of course sometimes being a glass half full person I immediately thought he had been bitten by a snake until I had cleaned up all the blood. At 7.20am EDT Burnie in Tasmania was hit by a 3.4 tremor registering 3.4 on the Richter scale Poor Tassie Bushfires Snow and tremors all in one week
So this morning up at 4.40am and as usual when I woke I hoped on to FB to do my updates for the various pages we own and a couple of posts jumped out at me and I am going to share them this morning for the following reasons...
· They made me feel good · They addressed a common problem amongst dementia caregivers
· They inspired me
· I simply want to share
This is a post from a FB friend and my response.
I know many of you will relate to this.
Hope the response can help the FB friend and anyone else who finds themselves in this situation.
It is as much about knowing you are not the only one to feel that way.
“ So I don't care if she doesn't mean it or doesn't know what she's saying...when she tells me if I don't come and f**king get her, she has no daughter! Yes it does cut me to the core”
It is heart breaking and soul destroying when our parents are affected like this. Please don’t stop posting as you need to get how you feel out of your system. You know and I know, rationally that it is the disease but the gut wrenching emotion we feel when these words are said is not easy to overcome and has to be let out. We grow up and even if we are not that close to our parents we somehow think they are going to always be the there and then disease claims them and things change and in many instances we become the parent. It shouldn't happen but it does.. Of all the things that happen in life this is one of the hardest things to take the hardest walk; but what does not break us strengthens us. You will get there. <3 span="span">
I know many of you will relate to this.
Hope the response can help the FB friend and anyone else who finds themselves in this situation.
It is as much about knowing you are not the only one to feel that way.
“ So I don't care if she doesn't mean it or doesn't know what she's saying...when she tells me if I don't come and f**king get her, she has no daughter! Yes it does cut me to the core”
It is heart breaking and soul destroying when our parents are affected like this. Please don’t stop posting as you need to get how you feel out of your system. You know and I know, rationally that it is the disease but the gut wrenching emotion we feel when these words are said is not easy to overcome and has to be let out. We grow up and even if we are not that close to our parents we somehow think they are going to always be the there and then disease claims them and things change and in many instances we become the parent. It shouldn't happen but it does.. Of all the things that happen in life this is one of the hardest things to take the hardest walk; but what does not break us strengthens us. You will get there. <3 span="span">
Then there was the post from Norrms in the UK talking about the standardisation of MME’s and of course I had to buy into that one as well
Norrms Later today I will write a letter to Alistair Burns, the UK Clinical Director of Dementia asking for the Unification of the Mini Mental Test within the UK. Last year I was aghast to learn that different trust`s around the UK ask differing questions and also some of the questions are, well, shall we just say, not very useful, the reason for this is as follows.
Dementia is a Terminal Disease!! No one has ever survived it!! Now,
No matter where you live in the UK, if you break a bone, you are given an X-Ray, that’s a “Given”
If you have heart problems? You are given an ECG that’s a “Given”
If you think you may have a clot on the brain? You have either an MRI scan or a CT scan, that’s a “Given”
And yet, if you are brave enough to actually make an appointment with your GP, and openly admit you are having memory problems which could lead to it being a terminal disease? You are asked a few questions to score out of 30 (Approx) and if you don’t score the recommended number you are sent on your merry way!!!
Why are so many people not diagnosed? Well, let me explain, Dementia as you know is “predominantly” short term memory loss and yet some of the questions that are being asked are questions like “Who is on the Throne? The queen has been there for over 60yrs!!
Where do you live and name three streets around your house? Suppose you have lived there TWENTY years +?
What car do you drive (if applicable) and believe me it is in a lot of cases!! Most people keep their cars for years!!
Yes, these are actual questions that are being asked. The questions that are not being asked are questions like
“How did you get here this Morning?
When did you last go on Holiday ?
What did you have for breakfast?
What Season is it now?
Where did you go last weekend? (if carer/wife is with them, and they should be at this stage in some cases)
Now for all of those in the Government that love Stats, facts and figures, how is it possible to correlate all the information to give a true reading of figures of people who have been diagnosed in the UK when there is such a variation in the questions, depending where you live? It’s just not possible? And, more importantly, how many people are being Miss diagnosed, or not diagnosed at all because the wrong questions are being asked??
I am not an academic, far from it, but I do know that after some research of my own, some of the questions in the Mini mental test are posed by professors and consultants, which is quite right, but!! Some of them are not relevant and the wrong conclusion is being arrived at tio the cost, of dare I say it, human life.
An overhaul and a Unification of Mini Mental tests all over the UK is what`s needed. These tests are given at a time when it crucial to get it right, if we don’t get this right, at the very beginning of this illness, then lives will be lost and families destroyed. If we do get this right, the benefits are immense, not only do we help people to come to terms with this awful disease, but to improve the quality of life for thousands if not millions when you include family and carers.
Dementia is a Terminal Disease!! No one has ever survived it!! Now,
No matter where you live in the UK, if you break a bone, you are given an X-Ray, that’s a “Given”
If you have heart problems? You are given an ECG that’s a “Given”
If you think you may have a clot on the brain? You have either an MRI scan or a CT scan, that’s a “Given”
And yet, if you are brave enough to actually make an appointment with your GP, and openly admit you are having memory problems which could lead to it being a terminal disease? You are asked a few questions to score out of 30 (Approx) and if you don’t score the recommended number you are sent on your merry way!!!
Why are so many people not diagnosed? Well, let me explain, Dementia as you know is “predominantly” short term memory loss and yet some of the questions that are being asked are questions like “Who is on the Throne? The queen has been there for over 60yrs!!
Where do you live and name three streets around your house? Suppose you have lived there TWENTY years +?
What car do you drive (if applicable) and believe me it is in a lot of cases!! Most people keep their cars for years!!
Yes, these are actual questions that are being asked. The questions that are not being asked are questions like
“How did you get here this Morning?
When did you last go on Holiday ?
What did you have for breakfast?
What Season is it now?
Where did you go last weekend? (if carer/wife is with them, and they should be at this stage in some cases)
Now for all of those in the Government that love Stats, facts and figures, how is it possible to correlate all the information to give a true reading of figures of people who have been diagnosed in the UK when there is such a variation in the questions, depending where you live? It’s just not possible? And, more importantly, how many people are being Miss diagnosed, or not diagnosed at all because the wrong questions are being asked??
I am not an academic, far from it, but I do know that after some research of my own, some of the questions in the Mini mental test are posed by professors and consultants, which is quite right, but!! Some of them are not relevant and the wrong conclusion is being arrived at tio the cost, of dare I say it, human life.
An overhaul and a Unification of Mini Mental tests all over the UK is what`s needed. These tests are given at a time when it crucial to get it right, if we don’t get this right, at the very beginning of this illness, then lives will be lost and families destroyed. If we do get this right, the benefits are immense, not only do we help people to come to terms with this awful disease, but to improve the quality of life for thousands if not millions when you include family and carers.
Responded ---liked and shared I agree with you and David’s statement it should be a standardised set of relevant questions covering cognitive and decision making areas as well as long and short term memory no matter where you live Lewy Body Support Group Sunshine Coast
Also found a link to a US project called Building the Enterprise Gen1 google the term it is simply astounding .. there are more things possible than we could ever imagine.
Today is going to be a great day I can feel it ....so much beauty and grace in the world have a good day everyone
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