Now I think its time to tell you all about my grandparents
as they were amazing, and Mum and Dad’s side were so different. I only ever knew Dad’s mother but have heard
so many stories about the rest that I’ve done some research and have quite a
bit of info - and how interesting it is…
I will start with Mum’s dad, William Henry Jones from Brighton in England. William was a Lance Corporal in the Connacht (Connaught)
Rangers, a part of the British Army that was based in Ireland. He was stationed in Galway in Bothormore Barracks
and would have spent some time in Mountbellew as the guest of Sir Henry
Christopher Grattan-Bellew, 3rd Baronet who was also a member of the Connacht
Rangers at the time. I discovered that William’s father was also William Henry
living in Brighton and working as a bricklayer and married to Lucille. Grandfather William had one younger brother
called Henry, and sadly we have no more information on them as somehow when
William married my grandmother he lost touch with his family, and that was
that.
William was, by all accounts, a brilliant musician playing the double bass,
cello and violin. I know he spent some time
abroad with the British Army going to places like India, Egypt and Kuwait. He also arrived in Suez in 1918 and took part
in the Palestine campaign ending the war at Nazareth Palestine. How amazing that must have been - and then he
came back to Ireland to a country in turmoil.
Mum’s mother was Norah Devaney, daughter of Patrick Devaney. Patrick was a coach driver for Sir Henry
Christopher Grattan-Bellew and Norah Devaney was housekeeper to Sir Henry
Christopher Grattan-Bellew. So my grandmother
would have been born and grew up on the Grattan-Bellew estate. The Grattan-Bellews were Catholic landlords,
very rare at that time, and were known to be very good to their staff and the
people of the town. I have been told by
my Mum’s sister - my Aunt Josephine - that Sir Henry bought the house my
grandfather and grandmother moved into when they married so that my great grandmother
would have a home when she retired from work.
It’s easy to see how my Mum’s parents would have met, but it would have been
very hard for them. Ireland at that time
was a very different place to now; he was a Protestant and she was a Catholic -
and he was a British solider, a member of the occupying forces. To my mind they must have been very brave.
Now to Dad’s family: Dad’s dad, my grandfather
on this side was Leo and we can trace his family forebears back to 1799 at
Westport Co. Mayo. It was no surprise
for me to learn that on the 1901 Census of Ireland that the then16 year-old Leo
was listed as a plumber, as indeed my own father became! Grandfather Leo’s brothers were part of an
important time in Ireland’s history…
Ralph (who my father was named after), John and Francis – and probably Leo too
– all played a part in the 1916 Easter Rising in Dublin, and we know for a fact
that Ralph was in the GPO building on O’Connell St. I can’t tell for definite if the other
brothers were, but all of the stories that we were ever told had them running
guns in a baby’s pram and being very involved in all the activities all over
Dublin on that particular week. Their
involvement continued for the next few years working with Michael Collins.
When the treaty was signed with the British government, the brothers were on
the side of “no” to the treaty. I’ll
stop boring you with a big history lesson but my vote has always been with
Michael Collins and what he stood for – which would have made steam come out of
Leo’s ears! Ralph went on to be one of the founding
members of a well-known political party that I have never voted for.
My grandfather Leo’s father was also called Leo and was a commercial traveller
according to the 1901 census. And his
father was James John Lynch but was known as Leo – confused? He was born in 1860, and his father was John Lynch, born at
Westport Co. Mayo on Christmas day 1799 and a landscape gardener both in
Ireland and the UK at Kew Gardens. He
didn’t marry until he was 50 years old, and after giving birth to 10 children
between 1850 and 1866 his wife Mary died at the age of 45. John’s
father was a John Lynch about whom we have few details date-wise. What we do know is he was a gentleman farmer
who lost his land to Lord Sligo. He
believed his land was taken unlawfully and took legal cases to the House of
Commons in Dublin and the House of Lords in London – unsuccessfully. This would have been some time around
1750/60.
So, as you can see on my Dad’s father’s side the history is very interesting… I’m afraid I’ve very little information
about my Dad’s mother other than she was born in 1891 as Gertrude Byrne and by
1901 when she was 10 both her parents were dead as her brother Andrew was
listed as head of household aged 23 in that year’s census. They were living in two rooms on Upper
Clanbrassil St. in Dublin. By 1911 they
had gone up in the world and moved to a house in Rathmines, Dublin, and 21
year-old Gertrude Byrne was working as a ladies tailor. I’m not sure when her and Leo met or married,
all I know is my father was their fifth child and born in 1922. And my Nana Gertie (as she was known to us)
died when I was about 11 – so she lived to a good age!
Looking back on all that I’ve just written, it’s amazing to think that
gun-running rebels and fighters all ended up being connected to a British
soldier and a family in service!
My father Ralph as a young man was working on the building of Merlin Park
Hospital and went to dances at the Seapoint Hotel in Galway. This was where my grandfather William played
in, and was leader of, a band. William
asked his daughter Catherine – known as Kitty – to come and help out, and that
is how my Mum and Dad met. Apparently he
had to chase her for a long time before she would go out with him, and the rest
as they say, is history!
Both Mum and Dad have now left us but as I’ve mentioned in a previous blog, I
had the best childhood and would not swap any of it. Mum and Dad were the best – here’s to you Ray
(Ralph) and Kitty (Catherine).
More soon – and there’s lots happening with us in the here and now… Don’t forget to join my Facebook group where
there’s lots of photos and news items, plus if you’ve not already seen it there
was a great feature in the Sunday Independent’s Life magazine last Sunday.
Ciao!
Eimear X
Friday 30 May 2014
Monday 12 May 2014
Part 9. Lucky to be living in Wexford
How lucky I am to be living here in
Wexford because I really believe if I was still in Dublin I would not be
getting as good help from local services as I am getting here. I am
not able to name the people who help so I will give them all pen-names, and
they will all know who they are should they be reading this.
I would have to start with “Laura” my wonderful physiotherapist who has been with me since the beginning of all this - when we thought it was something that could be fixed. It was me and Laura meeting every week, doing our exercises, and it was her urging me to call and get the doctors to see me sooner which led to my eventual diagnosis . What a huge help she has been, always full of encouragement, and Laura helped me to stay walking much longer than the hospital team wanted. She has also done referrals to lots of other services.
So I had an Occupational Therapist (OT) before diagnosis who we will call “Marie”. Marie was a great help with practical things around the house, and once I was told I had Motor Neuron Disease she passed me over to the Palliative Care team (yes I hated the word “palliative” too when I first heard it, but it’s about living the best way possible). My new OT from Palliative Care we will call “Beth” - someone else with a very positive attitude right on my wavelength - and when Beth calls to the house it’s not all business…we manage to have a great laugh too! Marie used to call us “MacGyver” as we always seemed to find ways to overcome the latest difficulty we had, and she always said she was trying to keep up with us.
We have wonderful district nurses who we will call Victoria, Amy and Gina who call in all the time. Especially Amy who we see every week; again, it’s not all about MND - we chat about lots of different things and laugh. I also have a dedicated Palliative Care nurse. I know, there’s that word again, but its about pain relief and management, and believe me that is important. I am allergic to morphine so will never enjoy the only legal high…had it once and had to be resuscitated - the after-effects of which are not pleasant! As well as being in dire pain because they give you Narcan to nullify the morphine; not a situation I ever want to be in again.
You’ll already know from a previous blog about the progression from one boot to a pair, then crutches, then finally the wheelchair. I now have my third wheelchair: this one is a super-duper one tailored not just to fit me, but to fit around as best as possible our house between the lounge and the bedroom. We will be breaking ground on our extension very soon which is going to give us a new bedroom, a wet-room and a bigger lounge. I will also have a new ramp for access directly into the extension. When this is built I will be able to have the new Hot Rod that is waiting for me in a warehouse, but until the extension is finished there has been no point in having it as there’s simply no room, no access and nowhere for me to go on it. My Hot Rod will run on batteries and Neil won’t need to push me around any more. And I will have to find someone to sign-write it for me. Can anyone help me with this?
I’m really, really looking forward to the wet-room so I can at last have a shower after 6 months of not being able to get in our existing shower. Bye-bye bed-baths…soon!
I wanted to write all that just to recognise how right this country can do things on a local and personal level. Unlike my experience of the government and the head office of the health service who don’t seem to understand a simple question.
With the help of my friends lobbying politicians, a local TD (MP) raised my issues in parliament, for which I thank him. However the reply he got from the Junior Minister for Health was not an answer to my question whatsoever, but a lot of spin! He didn’t tell me anything I didn’t already know; in fact it was a condescending and patronising answer mostly not relevant to my question. And I quote him:
“Motor Neuron Disease is a complex and challenging condition. The diagnosis, treatment and care of individuals with motor neurone disease requires input from a wide variety of services, ranging from GP and community services through to acute hospital and specialist disability services.
“I understand that the individual at the centre of this case has complex needs. The HSE has advised that numerous multidisciplinary meetings have taken place to try to ensure appropriate care for her. She is currently receiving Continuous Positive Airway Pressure Therapy at night time provided by HSE community services.
“The HSE is continuing to explore all options for this patient’s future care. The HSE remain available at all times to discuss these issues directly with the individual and her family.
“The HSE advises that the question of whether a patient can access home ventilation therapy, whether invasive or non-invasive, is not purely a financial issue but must be considered across a number of dimensions, including:
� A proper discharge care plan, which is discussed between the hospital consultant team and the appropriate primary or community care team, needs to be agreed and activated to ensure the appropriate setup is in place and can be sustained to meet the care needs of the patient over time.
� Home ventilation needs appropriate equipment, trained staff and both patient and family education as well as arrangement for upkeep and maintenance of such ventilation equipment.
� Nurses supervising such patients at home need to be appropriately qualified and competent to supervise the patient clinically; and
� A commitment to provide the necessary financial resources to support the care arrangement into the future.
“As I mentioned earlier, this patient is currently using non-invasive ventilation therapy in the home and I understand that there is currently no clinical indication for full mechanical ventilation in this case.
“However, the HSE has advised that this case will be kept under review and should a requirement for invasive home ventilation therapy be identified for this patient in the future this matter will be considered by the relevant hospital and community services.”
NOWHERE has my question been answered regarding Invasive Ventilation at home. Who IS/ARE this HSE? WHO is making the decision? WHO is available to talk to me? HOW do I contact someone of influence? The idea of leaving the decision about Invasive Ventilation until it “is indicated” – or in other words I need it – is a ridiculous notion. They won’t be sat around a table having tea and a discussion when I am gasping for my last breath! Is it just me, or does it seem ridiculous to you too?
I have now been forced to write another letter which my friend Elaine has elaborated on, on my behalf, and she has sent it to all the relevant politicians once again in the hope that we get a PROPER answer…
It looks like this:
CONCERNING: EIMEAR LYNCH-ROWE
Dear Minister Reilly
Firstly, I would like to thank you for your attention to my initial contact regarding Eimear Lynch-Rowe and her situation due to Motor Neuron Disease and in particular to the detailed response which you sent to me last week. I would like to advise you that Eimear and her husband Neil have requested that I act on their behalf regarding correspondence with TDs and the Dail.
Since my initial email at the beginning of April where I approached all TDs and Ministers advising about Eimear’s condition and situation approximately forty members of the Dail have raised questions directed at you, Minister White and the HSE. It is clear from the responses received to date that Eimear’s case is receiving attention. However, the question which Eimear needs an answer to has not actually been addressed.
Writing on behalf of Eimear and her husband Neil, I can advise you that they are increasingly frustrated to see that they are not the only ones ‘fobbed off’ with what are essentially mere platitudes and stock responses. Consistently they have received stock replies regarding the issue of home ventilation – that whether it is invasive or non-invasive it cannot be considered in isolation and whether the patient has access to such treatment is not purely financial.
Eimear and Neil are, naturally enough, very aware of the need for a proper care plan to be in place, the need for equipment, the need for staff training and family education as well as the necessary qualification of supervisory nurses. It is rather patronising to think that the individual who is actually living in these circumstances, living with such an aggressive and rapid form of Motor Neuron Disease, would not be aware of her needs. To receive this stock response from yourself, Minister White and the HSE in these desperate and tragic circumstances is both increasingly frustrating and unnecessarily upsetting.
What Eimear actually needs to know is that the Government and the HSE will respect her wishes and her right to life as and when her rapidly progressing MND reaches the point of making her lungs no longer able to function – either independently or with non-invasive ventilation.
Eimear is fully aware that she does not need this treatment right now, she does not need it today. She is trying to preserve and protect her future whilst she is still able to. She is attempting to establish that she will be able to have her future, to have her right to life, and she needs to do this now, before she will no longer be in a position to fight for what she needs.
In direct communication with Eimear yesterday I was asked to forward the following to each TD who has responded to me:
“I am amazed and upset that no-one I have contacted seems to have understood or grasped the simple ambition of my first communication. So let me simplify exactly and unequivocally precisely what it is that I want.
“When I first raised the subject of Invasive Ventilation with my consultant Professor Hardiman last December (2013), I expressed clearly my wish to stay alive via this method as and when the time comes.
“She told me no. Professor Hardiman said that the HSE would not sanction this on cost grounds, and reiterated this position when I asked again in February. On the latter occasion she gave a much clearer indication that this decision was one of cost.
“Since taking my very personal campaign and ambition into the public and national domain, I have had many replies and statements using the arguments of ethics, cost and quality of life. Each of these arguments can be dismissed with one fact: that the HSE itself employs Dr. Tim O’Brien who also has Motor Neuron Disease and has been living on Invasive Ventilation for at least 14 years.
“At this stage, having heard my situation raised in the Dail and had many replies from various politicians and HSE employees, I am very tired of the pat reply that “Invasive Ventilation is not indicated in (my) case at present.
“Of course it isn’t. But it WILL be, and given my most rapid and aggressive progression of Motor Neuron Disease, it WILL be indicated very much sooner, than later. And at that stage I will no longer be in this now failing position to fight for what I want, and what is my right, when that time comes.
“So in very plain English, this is my question:
I would have to start with “Laura” my wonderful physiotherapist who has been with me since the beginning of all this - when we thought it was something that could be fixed. It was me and Laura meeting every week, doing our exercises, and it was her urging me to call and get the doctors to see me sooner which led to my eventual diagnosis . What a huge help she has been, always full of encouragement, and Laura helped me to stay walking much longer than the hospital team wanted. She has also done referrals to lots of other services.
So I had an Occupational Therapist (OT) before diagnosis who we will call “Marie”. Marie was a great help with practical things around the house, and once I was told I had Motor Neuron Disease she passed me over to the Palliative Care team (yes I hated the word “palliative” too when I first heard it, but it’s about living the best way possible). My new OT from Palliative Care we will call “Beth” - someone else with a very positive attitude right on my wavelength - and when Beth calls to the house it’s not all business…we manage to have a great laugh too! Marie used to call us “MacGyver” as we always seemed to find ways to overcome the latest difficulty we had, and she always said she was trying to keep up with us.
We have wonderful district nurses who we will call Victoria, Amy and Gina who call in all the time. Especially Amy who we see every week; again, it’s not all about MND - we chat about lots of different things and laugh. I also have a dedicated Palliative Care nurse. I know, there’s that word again, but its about pain relief and management, and believe me that is important. I am allergic to morphine so will never enjoy the only legal high…had it once and had to be resuscitated - the after-effects of which are not pleasant! As well as being in dire pain because they give you Narcan to nullify the morphine; not a situation I ever want to be in again.
You’ll already know from a previous blog about the progression from one boot to a pair, then crutches, then finally the wheelchair. I now have my third wheelchair: this one is a super-duper one tailored not just to fit me, but to fit around as best as possible our house between the lounge and the bedroom. We will be breaking ground on our extension very soon which is going to give us a new bedroom, a wet-room and a bigger lounge. I will also have a new ramp for access directly into the extension. When this is built I will be able to have the new Hot Rod that is waiting for me in a warehouse, but until the extension is finished there has been no point in having it as there’s simply no room, no access and nowhere for me to go on it. My Hot Rod will run on batteries and Neil won’t need to push me around any more. And I will have to find someone to sign-write it for me. Can anyone help me with this?
I’m really, really looking forward to the wet-room so I can at last have a shower after 6 months of not being able to get in our existing shower. Bye-bye bed-baths…soon!
I wanted to write all that just to recognise how right this country can do things on a local and personal level. Unlike my experience of the government and the head office of the health service who don’t seem to understand a simple question.
With the help of my friends lobbying politicians, a local TD (MP) raised my issues in parliament, for which I thank him. However the reply he got from the Junior Minister for Health was not an answer to my question whatsoever, but a lot of spin! He didn’t tell me anything I didn’t already know; in fact it was a condescending and patronising answer mostly not relevant to my question. And I quote him:
“Motor Neuron Disease is a complex and challenging condition. The diagnosis, treatment and care of individuals with motor neurone disease requires input from a wide variety of services, ranging from GP and community services through to acute hospital and specialist disability services.
“I understand that the individual at the centre of this case has complex needs. The HSE has advised that numerous multidisciplinary meetings have taken place to try to ensure appropriate care for her. She is currently receiving Continuous Positive Airway Pressure Therapy at night time provided by HSE community services.
“The HSE is continuing to explore all options for this patient’s future care. The HSE remain available at all times to discuss these issues directly with the individual and her family.
“The HSE advises that the question of whether a patient can access home ventilation therapy, whether invasive or non-invasive, is not purely a financial issue but must be considered across a number of dimensions, including:
� A proper discharge care plan, which is discussed between the hospital consultant team and the appropriate primary or community care team, needs to be agreed and activated to ensure the appropriate setup is in place and can be sustained to meet the care needs of the patient over time.
� Home ventilation needs appropriate equipment, trained staff and both patient and family education as well as arrangement for upkeep and maintenance of such ventilation equipment.
� Nurses supervising such patients at home need to be appropriately qualified and competent to supervise the patient clinically; and
� A commitment to provide the necessary financial resources to support the care arrangement into the future.
“As I mentioned earlier, this patient is currently using non-invasive ventilation therapy in the home and I understand that there is currently no clinical indication for full mechanical ventilation in this case.
“However, the HSE has advised that this case will be kept under review and should a requirement for invasive home ventilation therapy be identified for this patient in the future this matter will be considered by the relevant hospital and community services.”
NOWHERE has my question been answered regarding Invasive Ventilation at home. Who IS/ARE this HSE? WHO is making the decision? WHO is available to talk to me? HOW do I contact someone of influence? The idea of leaving the decision about Invasive Ventilation until it “is indicated” – or in other words I need it – is a ridiculous notion. They won’t be sat around a table having tea and a discussion when I am gasping for my last breath! Is it just me, or does it seem ridiculous to you too?
I have now been forced to write another letter which my friend Elaine has elaborated on, on my behalf, and she has sent it to all the relevant politicians once again in the hope that we get a PROPER answer…
It looks like this:
CONCERNING: EIMEAR LYNCH-ROWE
Dear Minister Reilly
Firstly, I would like to thank you for your attention to my initial contact regarding Eimear Lynch-Rowe and her situation due to Motor Neuron Disease and in particular to the detailed response which you sent to me last week. I would like to advise you that Eimear and her husband Neil have requested that I act on their behalf regarding correspondence with TDs and the Dail.
Since my initial email at the beginning of April where I approached all TDs and Ministers advising about Eimear’s condition and situation approximately forty members of the Dail have raised questions directed at you, Minister White and the HSE. It is clear from the responses received to date that Eimear’s case is receiving attention. However, the question which Eimear needs an answer to has not actually been addressed.
Writing on behalf of Eimear and her husband Neil, I can advise you that they are increasingly frustrated to see that they are not the only ones ‘fobbed off’ with what are essentially mere platitudes and stock responses. Consistently they have received stock replies regarding the issue of home ventilation – that whether it is invasive or non-invasive it cannot be considered in isolation and whether the patient has access to such treatment is not purely financial.
Eimear and Neil are, naturally enough, very aware of the need for a proper care plan to be in place, the need for equipment, the need for staff training and family education as well as the necessary qualification of supervisory nurses. It is rather patronising to think that the individual who is actually living in these circumstances, living with such an aggressive and rapid form of Motor Neuron Disease, would not be aware of her needs. To receive this stock response from yourself, Minister White and the HSE in these desperate and tragic circumstances is both increasingly frustrating and unnecessarily upsetting.
What Eimear actually needs to know is that the Government and the HSE will respect her wishes and her right to life as and when her rapidly progressing MND reaches the point of making her lungs no longer able to function – either independently or with non-invasive ventilation.
Eimear is fully aware that she does not need this treatment right now, she does not need it today. She is trying to preserve and protect her future whilst she is still able to. She is attempting to establish that she will be able to have her future, to have her right to life, and she needs to do this now, before she will no longer be in a position to fight for what she needs.
In direct communication with Eimear yesterday I was asked to forward the following to each TD who has responded to me:
“I am amazed and upset that no-one I have contacted seems to have understood or grasped the simple ambition of my first communication. So let me simplify exactly and unequivocally precisely what it is that I want.
“When I first raised the subject of Invasive Ventilation with my consultant Professor Hardiman last December (2013), I expressed clearly my wish to stay alive via this method as and when the time comes.
“She told me no. Professor Hardiman said that the HSE would not sanction this on cost grounds, and reiterated this position when I asked again in February. On the latter occasion she gave a much clearer indication that this decision was one of cost.
“Since taking my very personal campaign and ambition into the public and national domain, I have had many replies and statements using the arguments of ethics, cost and quality of life. Each of these arguments can be dismissed with one fact: that the HSE itself employs Dr. Tim O’Brien who also has Motor Neuron Disease and has been living on Invasive Ventilation for at least 14 years.
“At this stage, having heard my situation raised in the Dail and had many replies from various politicians and HSE employees, I am very tired of the pat reply that “Invasive Ventilation is not indicated in (my) case at present.
“Of course it isn’t. But it WILL be, and given my most rapid and aggressive progression of Motor Neuron Disease, it WILL be indicated very much sooner, than later. And at that stage I will no longer be in this now failing position to fight for what I want, and what is my right, when that time comes.
“So in very plain English, this is my question:
“When
the time comes, and when it is necessary, will Invasive Ventilation be
available to me, and if not, why not?
“And I need this
question answered URGENTLY.”At this point in time, you have advised in writing that the HSE is keeping Eimear’s case under review and that you have undertaken to keep the chief whip appraised of any developments, requesting that HSE officials meet Deputy Kehoe and Ms. Lynch-Rowe to discuss progress. Whilst this is most definitely a step forward, in that Eimear’s case is currently flagged, what she needs is not for her case to be kept under review whilst she waits for the inevitable to happen.
What she needs is proactive recognition from the HSE, her hospital consultation team and her primary/community care team. She knows her illness means her lungs will fail. Her hospital team know her lungs will fail. Her primary/community care team know her lungs will fail. She needs her support structure to plan for this now, to know what her future shall be now. Not when her lungs fail.
I would like to thank you again for assisting myself, Eimear and her family in this matter so far, and for continuing to support and assist us in her fight. I would ask that you would ensure her question is actually answered by the HSE on this occasion.
Yours sincerely,
Elaine Daly.
Someone should have warned them that I will NOT stop shouting until someone hears my voice….even if it’s a computer generated voice!
There’s more new (and old) pictures in my Facebook group – please join it.
More soon.
Ciao!
Eimear X
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