I am an ordinary woman trying to deal with the extraordinary. But isn't that what being a WOMAN is all about
Wednesday, February 20, 2013
IT HAS BEEN A WHILE
It has been a while since my last blog and things are meandering along in Lewy Body world. Bought Dad the upwords game. Tiles anre big and easy to handle and clip into place oon the board. The board is smaller than a scrabble board so that means a shorter attention span required. It breaks my heart to see this man who used to slam dunk me with seven letter words in scrabble trying to put together three letter words on the board. Oh Lewy you are a thief in the dark that steals the most precious things in the cruelest way leaving a trail of devastation and broken hearts behind you.
Saturday, January 19, 2013
Tibet 2000
This is information I have taken from Yo Wangdu's page and is very similar to part of the pilgrimage I made in 2000 to Tibet. It was the most wonderful and fulfilling experience. One I have never regretted and one I hope to do again. It is truely where my heart resides.
Reting and the nunnery and sky burial were the most incredible experiences and we were also fortunate enough to go to Samye. Check out www.yowandu.com for more info on this trip.
Reting and the nunnery and sky burial were the most incredible experiences and we were also fortunate enough to go to Samye. Check out www.yowandu.com for more info on this trip.
This Land Cruiser trip is a great loop that takes you a bit off the main tourist routes, with beautiful scenery on every leg of the journey and each place fascinating in its own right. Ask your travel agent about setting it up.
(View from near Reting Monastery -- Drigung Til Monastery -- Derdom Nunnery. Photos: YoWangdu.)
Day One: Lhasa to Pembo
Day Two: Pembo to Namtso Lake
Day Three: Namtso to Reting
Day Four: Reting
Day Five: Reting to Drekung til or Derdom
Day Six: Derdom
Day Seven: Derdom to Lhasa
Day One: Lhasa to Pembo Valley
You can camp the first night out of Lhasa in the lovely, pastoral Pembo (Lundrub) Valley, full of barley fields and not on most tourist routes. While in Pembo, visit the small, local, non-touristy Nalanda and Langtang Monasteries.
Day Two: Pembo Valley to Namtso Lake
This not very traveled road, off the main route to Namtso, has endless, beautiful river valleys. You can also get to Namtso in one day from Lhasa if you prefer, on a more direct, and more traveled road. Namtso is beautiful, and high -- 15,400 ft / 4718 m. -- so be prepared for altitude symptoms.
Day Three: Namtso Lake to Reting Monastery
After first dreading the five and six and seven hour days of jolting over rough roads in the Land Cruiser, we found that the scenery unrolling through the window was mesmerizing in its beauty. Virtually every road we traveled in Tibet follows a big beautiful river, many of them milky blue-green, indicating origins in the snow mountains.
Day Four: Reting Monastery
In a country full of spectacular natural beauty, Reting is a pastoral heaven. At 13,350 ft, the monastery overlooks a perfectly smooth green and placid valley, a milky snow-fed river running through the bottom. Climb up the hill to Tsongkhapa's hermitage and a nunnery perched even higher up the mountain.
Day Five: Reting to Dregung Til Monastery
Dregung Til Monastery is known for having the holiest sky burial site in the Lhasa area. You can camp near Dregung sho, at the base of the steep mountain side that Dregung Monastery perches on.
Day Six: Tidrum Nunnery (Derdom)
From Dregung Til, it's a short drive to Tidrum nunnery, nestled in a narrow little picturesque valley criss-crossed with prayer flags and home to medicinal hot springs you can bathe in.
Day Seven: Tidrum to Lhasa
On the return journey, we stopped at Meldro-Gonkar for the Shodun festival happening there (it was September), with excellent horse and yak races.
Monday, January 14, 2013
The Missing Keys
have to share this with you not my Lewy Dad but my Mum who also has memory issues. Had been at Mum & Dads Since Sunday went home lunch time yesterday and then a received phone call last night .
what did *** do with the house keys?
Let me set the scene.. the keys have long ribbons attached and there are two sets kept in a special place near the doors. Structure order & continuity.
Once I had tried to convince her that the carer's hubby, care nurses or meals on wheels had not taken the keys, Mum settled a bit .. says me ...they have been misplaced you will find them.... rang back an hour later Mum is in tears haven’t found the keys both sets are now missing how are we going to lock the house up tonight ... house is locked up tighter than Fort Knox.
says me .. will be there in 30 minutes. Turned off dinner put the dogs away @6.00 drove back to Mum and Dad's. Took the spare set of keys I keep so we can at least lock up if keys are missing. On the drive turned to my man and said ...bet they are on the table right in front of her. Walked in Dad is agitated and upset Mum is in her chair crying.
Looked on the table and voila! there are BOTH sets of keys.. Says me... What are you upset about you found the keys.. Mum ...no they are the other keys ... What other Keys?... No Mum these are the house keys ...would not accept it until she had put the keys in the doors and tried them. Then she just broke down and sobbed .. we tried to make light of the situation and reassure both Mum and Dad that it was Ok no harm done ..better false alarms than not being told when something was wrong ....
This has really scared her ...any one who is familiar with my posts knows that Mum and I have a problematic relationship but last night I really felt for her as she sobbed her heart out and it is the first time in my life she has ever apologised to me. The poignant thing is they celebrate 66 years of marriage this Friday. We stayed fixed dinner and made sure Dad took his meds and had something to eat made Mum a coffee and hopefully she will eat the jelly that is in the fridge. Finally 2 hours later left to come home .. Fortunately it is Norah’s night she is the night carer and was due at 9.00pm. The joys of caring for your parents .
Saturday, January 12, 2013
Karmapa
What an interesting 24 hours
What an interesting 24 hours
· They addressed a common problem amongst dementia caregivers
· They inspired me
· I simply want to share
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
Found a link to Ceres Environmental Park on FB and posted that for my Vic friends brought back some many fond memories of Saturday morning veggie shopping buying plants and taking grandson Sam to see the chickens pigs and cows.
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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