Last night I watched the second instalment of the Four Corners investigation into Nursing Homes. As many of you would be aware my mother is resident in XYZ Nursing Home here in Newcastle. The program was very difficult to watch not just because Mum is a user of such a service but the treatment some of these elderly residents received beggars belief.
I asked myself after watching the first episode a week ago how I could be sure that this was not happening to Mum and the residents with whom she now resides. It was an easy question for me to answer as when I visit the home, and I do this very regularly, I observe the manner in which the staff interact with the residents as well as pay special attention to how Mum responds. Staff are caring and compassionate in their interactions with the residents and can be seen doing the little extras that make a difference. Of course there are times when they are over-stretched or very busy but this is generally explained to the resident if they have the cognitive skill to understand the concept and after prioritising tasks the request, whatever that may be, is responded too.
One issue that was raised in the Four Corners program was the level of staffing in nursing homes. It was proffered as an explanation by some that staff numbers had been cut in order to provide a greater level of profit to the home owners/operators. I am not going to pretend that there are never staffing issues where Mum resides. There are times when staff phone in ill, need to go home because they are unwell or have family commitments, sometimes it is easy to find a replacement for the situation and other times not. On the occasions when it is not possible to find a replacement the staff seem to work together to ensure that all necessary tasks and duties are undertaken and there does not appear to be an impact on resident care.
The program also spoke about lack of staff training for those entering the profession. In the six years Mum has been in care I have seen many new starters come on board. I have never asked about their qualifications or their level of training but in my observations it did not appear to be in any way lacking. At XYZ the new staff are on some level mentored by the long standing staff. Some of the staff have been at XYZ for 20 years plus, and I think this in itself speaks volumes about the organisation. I am also aware that there is a program of staff development available.
I have also been asked today what would I do if there was an issue where Mum was in care. The answer to that is somewhat easy to answer as their was an issue some months ago and the management responded appropriately, promptly and professionally.
Having said that I would like to just make a comment on the leadership team at XYZ. The culture of the place is one of respect and positivity and they enhance this by example and professional practice. They are welcoming in their approach to residents and encourage families to play an active role in the placement and on-going care of their loved one.
As many of you who know would attest there is not too much that I opt out of because of the CRPS. My close friend L and C would probably not agree with that as because I do more with these two great women they are often left at a loose end. But generally if something is planned I can make an appearance and get through an event unless it involves lots of travel, loud noise and lots of standing.
Some two years ago because I had a view that my social life was flagging I joined the local PROBUS Club. The people involved in Probus might also say that CRPS has an impact because of those reasons outlined earlier. One of the off-shoots of Probus is being part of a pretty awesome book club. Now you all know about my love of reading and this adventure has been really good for me as it has exposed me to reading books I would not read or in some cases even consider. At the end of last year we decided that we would all choose a genre at the meeting and when it was our turn to host the meeting we would be ready with a book chosen according to whatever genre we were allocated. So last month it was decided that I would host the September meeting and the genre I had been allocated was historic fiction. Now that was an easy genre for me because I really love reading historic fiction particularly Australian history and books written by women. So the book I chose was BEHIND THE SUN by DEBORAH CHALLINOR.
The book tells the story of four women on a perilous journey to Australia. Its the story of them relying on their wits to survive. The four women form a bond and a strong friendship. There is streetwise prostitute Friday Woolfe who is in London’s notorious Newgate gaol, awaiting transportation. Whilst waiting there she meets three other girls: opportunistic but intelligent thief, Sarah Morgan, naive young Rachel Winter, and reliable and capable seamstress, Harriet Clarke.
On the voyage to New South Wales their friendship becomes unbreakable – but there are others on board who present a challenge to their future. Friday makes an deadly enemy of Bella Jackson, a ruthless woman whose power seems undiminished by her arrest and transportation, while Harriet is taken under the wing of a young doctor, James Downey. Rachel catches the eye of a sinister passenger with more than honour on his mind.When they finally arrive on the other side of the world, they are confined to the grim and overcrowded Parramatta Female Factory. But worse is to come as the threat of separation looms. The author uses the simile “the land behind the sun” to describe Australia.
This book is the first in a series of four and many members of the club have continued on, including myself, to find out how the tale develops. Deborah Challinor is a great writer and she evokes clear images of London and colonial Australia which demonstrate she has done much research. When I googled her to get some background, I found she had lived in Australia for four years in order to conduct the research. She is a New Zealander, as is one of the member of the club. I also remembered during my reading about the author that I had read another of her books called FIRE, which I would also recommend.
Of course when you host book club it falls to the member to provide afternoon tea. I was considering last night cancelling the get together as I felt so woeful and the pain so elevated. But as we say tomorrow is another day and when I woke this morning I was feeling a little better and decided to proceed. I could not have done it without my HB as he helped me get things ready and when I asked to be taken to Bunnings to buy something for morning tea he knew I really meant Aldi and did not miss a beat.
You see when I am in a flare or coming out of a flare I have dreadful trouble with getting the words out……or I should say getting the right words out. The group this afternoon will attest to that as I really struggled with people’s names this afternoon and often came out with the wrong name or could not even get a name out. The pain this morning was about a 6/10 and now its probably an 8/10. You could say I that is because I have done too much but I say thats just the way it is. the pain can escalate if I do too much and do not pace myself to it can escalate for no apparent reason.
So thanks ladies for a great discussion this afternoon and for helping me get through this flare relatively unscathed.
It has been a really long night. As a matter of fact it has been a really long couple of weeks. Again sleep has eluded me such is the quantum of the pain I am currently experiencing. I cannot think what the pain would be like without the number of tablets I currently swallow every morning, noon and night.
I could not watch television any longer so I was in bed last night by 7.00pm. I could not sleep and thus I could not stay in bed past 1.40am. This is one part of the CRPS that I really hate. A couple of nights of not being able to sleep for some reason really rattles me. So since the early hours of this morning I have read and Facebooked and watched Wentworth. Thanks to my eldest granddaughter for introducing me to this….binge watching has got me through till the early morning.
I know that what I am currently experiencing will subside somewhat, it always does. Although the pain never completely goes away it will recede, I hope, to a reasonable, manageable level. A level at which I can wear my shoes and wear a something covering my left arm. When things are bad, the pain prevents even these simple acts. I told my Hb last night that not only did I have burning in my left arm it feels like i have a broken bone.
Earlier in the week I experienced a new symptom and that is one of the challenges of CRPS. I have experienced CRPS in the side of my neck and face before but on Wednesday and Thursday I could feel ants biting the inside of my cheek and the side of my tongue. When I saw the GP she said that she was not sure that I would be experiencing CRPS in that area. Luckily that symptom has settled, but subsequent research indicates that it can spread to any part of the body including the tongue. There is little knowledge among the general medical community about this condition. Yes they know what it is but very few, except for the senior pain specialists have more than a limited knowledge of the condition. I am not being critical of the GP involved just stating the facts as I have experienced them. There is little public and medical awareness, quite often when I tell people I have a chronic pain condition called Complex Regional Pain Syndrome they say they have never heard of it and if I try to stay positive I am sure to be alright or if I try acupuncture or hypnotherapy or some other treatment then that is sure to fix it. I often see a look of “I think she has made that up” I did have one doctor tell me that he thought the pain specialist had made up the term just to give me a name to call it. When I complained about this to the pain specialist I was seeing at the time he suggested if it was easier I should just tell people I had MS. My response to him (and this was at my last appointment with him before I changed specialists ) how we will change things if we deny its existence.
Hence the reason I started the blog was to raise awareness about CRPS and chronic pain in general. I have been a little remiss in not writing much during this year but that is something I am hoping to change. The condition is a bit like being on an out of control seesaw there are many ups and downs and sometimes it seems there are too many downs but most days I can embrace what is happening and work towards an acceptance of what has befallen me.
Today I have been to the funeral of a very dear friend. My friend and I went to primary school together so our friendship is very long standing. I have found it hard to deal with her passing as she was only 66 in July. Of course if she would introduce me to anyone she would say “this is my friend Anne, we were at school together but of course she is so much older than I” The age difference was a mere 11 months!!!!
She was moving through her life having retired from full time work in education to doing part time work in adult education. In September she was diagnosed with stage four ovarian cancer and given a 5% chance of beating this insidious disease. Unfortunately she was in the 95%. She endured some fierce chemotherapy, several admissions to hospital and surgical procedures during this time.
She made her mark in education for deaf, hearing impaired children and children with special needs. She worked in leadership positions at a diocesan and school level making a tremendous difference to the lives of the kids in her care.
She was a gracious host and I enjoyed her hospitality on many occasions, Most memorable was when she rang out of the blue to offer Mum and I accommodation in her Sydney home whilst my Dad was having open heart surgery at the Royal Prince Alfred Hospital.
Her move to live back in Newcastle meant we got to see more of each other and share many events. Even when she was moved into the hospice her graciousness in the face of her demise was laudable. Many people visited, I am sure all with a sense of disbelief, that a woman who was such a life-force and demonstrated so much joie de vivre could be in this position.
At her funeral today her husband spoke of his love for her with the reverence of true love. They met and married later in life. Lived abroad for three years and were able to travel the world together. Her sister spoke of what it was like to have her as an older sister and the specialness of their relationship. Her brother then spoke about what being her brother meant to him and the way he teased her and played pranks on her when they were younger.
At the end of the requiem when the coffin was being carried out by her husband, nieces and nephews and the congregation was processing another old school friend and I who were both visibly distressed held hands with each other and walked behind the coffin as it was placed in the hearse. We did have a little joke and a laugh later on as we held hands all the way down the aisle in the church just like we would had done with our “partner” in primary school.
My reason for sharing her story is to emphasise the importance of living each day to the full, marking off the things on the bucket list because we don’t know what is ahead of us. We cannot predict the future nor can we change it so living in the moment has been brought home to me with a bang.
In his eulogy her husband quoted Breaker Morant “Live every day as if it were your last and then some day you’ll be right.”
Rest gently my gracious friend……May the choirs of angel come to greet you, may they lead you to paradise.
It is so long since I have written anything here I am not sure what I should write about. This year has been quite tumultuous for us as a family and finding time to for much of anything has been a little difficult. As well as all the family issues we have dealt with we have had some rather joyous events during 2018 with the birth of a new great-grandson in May and the celebration of Terry’s 70th Birthday and our second granddaughter’s 21st birthday.
The newest addition to the family Chase Thomas came into the world at the beginning of May after a fairly difficult pregnancy for our eldest granddaughter M and her partner and he is a baby brother for Miss Sarah. Some of you may remember Sarah made her arrival into the world 13 weeks early. However she shows no ill effects for her difficult start. M managed to make it through to 38 weeks this time but she needed 5 weeks bed rest in hospital to enable this. Sarah came to say with the grandma B and Pa J and was rather indulged by all. M is a great mum to the two children making her Poppy and I quite proud of her achievements.
Our second granddaughter Mac celebrated her 21st Birthday in April. She too has made her grandparents very proud as she makes her way in the world almost at the completion of a degree in primary teaching. She works at two part-time jobs to support herself while studying full-time and still has the energy to enjoy a very active social life.
S our youngest granddaughter started school this year and it was beyond delightful for us to witness her wonderful transformation from a preschooler who was very shy and a little withdrawn to an outgoing and confident Kindergarten student who just loved “everything” about big school. She came home on the first day and reported that she had a “boyfriend” who turned out to be the grandson of a couple we were friends, bit lost contact, with some twenty or more years ago. This reconnect has been delightful.
J who is B, our second daughters partner ,surprised us about six weeks ago with his musical talent. When he was younger some thirty or so years ago he played in a rock band which had released a couple of singles. They were very popular in Newcastle nightclubs and my eldest daughter L. was a fan. B herself was not a follower and as she says she was too young and did not even have a fake ID when they were popular. Anyway the band had a reunion ‘gig’ at a popular nightspot here in Newcastle and T and I went along to lend support. Oh my goodness we were pleasantly surprised by their talent. We knew J was a fairly accomplished musician but seeing him perform in the rock band was really something else. it was a difficult night for me however when they started to play the vibration of the music ramped up my pain.
L our eldest daughter and her family left Newcastle last week to return to Darwin where they lived for about 13 years some 10 years ago. Part of me is really happy for them and I hope all goes well in the top end but I will really miss her and the kids (and her husband) so I can see some trips to Darwin coming up in the future.
in the midst of all of this Mum had a severe chest infection which when overlaid on her already dire chest condition was considered to be pretty serious. She has struggled with the most horrendous cough for some six week and was absolutely exhausted. At 93 this has probably been considered to be life threatening but in the last few days she has rallied and looks and sounds so much better.
As I said at the start it has been a big year thus far and T celebrated his 70th birthday on 24 July. At his party I told the story of saying to the girls (my daughters) one evening that I thought he was a very sexy man for someone who was about to turn 70. The kids did not want to her their mother making such comment so I will be in trouble for this on the blog but as I said to T “70 is fine when you look 59”
I hope this will be the start of more regular contributions.
What does one do when the pain is this bad……..I knew I was in trouble earlier this evening when I could not stand to sit her in my comfortable chair (although this is where I am now – my default position). I went to bed initially about 7.30. Here it is almost 2.00am and again for the fourth night in a row sleep is eluding me. I feel as if both my legs and my left arm is in a start of combustion. The pain is searing, burning, torturing and for the first time in a long while I feel as if I cannot cope with it. Hence I am writing as this is one way that i am able to loose myself.
My tossing and turning is disturbing Hb so I have removed myself and am now watching TV and writing about this thing that is my constant companion. The pain pills have not touched the sides tonight and despite the earlier efficiency of he new concoction they appear not to help during a flare such as I am having at the moment.
I am currently reading a great book called Two Steps Forward written by Graeme Simsion and his wife Anne Buist. Its a story of renewal – physical, spiritual and psychological. Its the story written about two people who set out to walk, the two thousand kilometres, from Cluny to Santiago in the footsteps of pilgrims who have been walking the Camino for two centuries.
I have read Graeme’s previous books the Rosie Project and the Rosie Effect which I thoroughly enjoyed. As i am reading this current book I am thinking to myself wouldn’t it be wonderful to be able to do something like this. Then as I said I got out of bed and had trouble even walking to the lounge room such is the quantum of the pain and state of my physicality tonight. So I think the Camino is definitely out of the equation.
I did have a funny moment yesterday. It was very hot here on New Years Day so I decided to have a swim. When I got out of the pool I received a always welcome call from my friend L., as I was sitting on the deck in my lovely new reading chair. Now those of you who have followed the blog and heard me talk of the symptoms of having CRPS is that on occasion (and for me it is generally preceding a bad flare) you have the feeling of ants crawling over your skin and biting you. As I talked and laughed with L. I was thinking to myself here comes a bad flare I can feel the ants on my skin. The phone call finished and when I looked down I actually had ants crawling all over my legs and feet. The formication was very real. HB has sprayed around the pool for ants today.
Part of my conversation with L was my expression of annoyance about people sending chain emails on FB and clogging the system. We started talking then about how times have changed and we both could recall how “distressed” our mothers would become if they received a chain letter in the mail. I spoke with Mum about this today and she said part of her problem with this was the anonymity of the whole process. I can remember one occasion very clearly when Mum got a letter inviting her to make a Novena for some cause or other. There were the names and addresses of several people in the letter inviting the receiver to sent the letter onto (i think) nine of there friends together with the people named in the letter. The letter invited the receiver to make the prayer and tell the people to whom they were writing how the prayer had helped them. Mum said the letter contained claims of people being cured from dreadful afflictions and the infertile giving birth.. The sender was to remain anonymous and Mum felt that if people were inviting her to pray for a special intercession they should have had the courage to sign the letter. She was able to recall talking it over which Dad when he came home from work and asking her friends if they had received the letter. She said that she consigned the letter to the garbage bin. I then was reflecting that if that was still practice today the mere act of send out 18 letters (9 included in the letter and 9 new people whose addresses were added to the letter to be sent out) would be a very costly exercise indeed. However Mum was able to remind me that stamps were not quite so expensive back then.
I am also feeling somewhat bemused about people making New Years Resolutions and posting them on Facebook for all the world to see. All the literature of course on setting goals says you have a better chance of achieving the goal is you write it down. I wonder if come June or July any of us will be asking those who have posted the “goals” online, how such and such is going. I also wonder if the person making the resolution will remember what they have posted. Now don’t get me wrong I am all for having goals and working towards their fruition my point is more about the way these things have crept into the public arena.
Someone did ask today if members of a group I belong to on FB if people remembered a particular nightspot which was very popular with young people back maybe 25 – 30 years ago. I did not share the story on FB but I remembered a story about my second daughter when she was in YR 11 did not come home from the movies at 11.30 as arranged. At 1.00am her friend’s mother and I were becoming a bit concerned and I made the comment to her on the phone that they must probably met daughter No1 and had gone to the nightspot. In the meantime another parent who I did not know and whose daughter I had never hear of, began ringing to finding out where his daughter was. At 2.30 my friend J and I decided enough was enough and we decided we would go and see if we could find our tardy daughters. Well all I can say is J had the good grace to get dressed appropriately for entering a nightspot. I was in my PJs. We found the girls in the nightspot and as we were driving them home we said we would laugh about this one day. (and we were right) My kids who are parents tell there kids about the night Grandmother came and made B come home dressed in her pyjamas in an attempt I think to let their kids know that they could be just as embarrassing as I was on that morning.
I thank the universe for the provision of Foxtel in this house so i have something to occupy me on nights such as these. I am a great watcher of Quiz shows and Pointless (a particular favourite of mine) is on. I suspect that the current atmospheric changes may be impacting on how my pain is reacting tonight.