Beloved

The day my mum died I was woken by a phone call. As I was asleep it went to voicemail and though early, something made me check it. It was the NUM of mum’s house asking me to phone as soon as I got the message.

Thinking mum had decked some poor chap on respite or fallen on her “bum” again as she liked to put it, I phoned back. Michelle the NUM answered immediately and said that there was no easy way to say it so she would just get it out there.

” Mum is gone”

Three simple words. My life would never be the same again, with three simple words. I then did something I have never done before and hope I never live long enough to do again..I wailed. Like an animal. Michelle started crying saying “oh Kate I am so sorry”. Almost as soon as I started though I stopped. All I could think of was that my beloved mum was not going to become bedridden, forgetting how to swallow, forgetting how to breathe. She was finally free.

I was saying this over and over to the NUM and she stopped crying and she said she was glad I was taking it like that. Then began the longest of days. First to tell my son, her first and much loved grandson, then to phone Norma my parent’s gorgeous neighbour, and then to get a bus to the care home. Only a fifteen minute bus trip which seemed achievable.

Michelle met us there and took us to see mum. Her door was locked and everyone who wanted to be out of their rooms had been taken to another area. While I sat there stroking her hand and her face a steady stream of workers came by to offer their condolences, look at mum and say their goodbyes. She was beloved by all. Her feisty spirit, her non complaining manner, the sheer joy she found in her new life endeared her to patients and staff and visitors alike.

Finally the room emptied and we had some time alone with mother and grandmother. I still to this day marvel at her body. It seemed too tiny to hold her complex spirit. Her mischievous nature, her huge huge heart.

I told her what I had told her every day right up to high school. That she was the BEST mother in the world. And I smothered her face with the great big smacking kisses she used to give to those she loved. And lately I had been privileged to give her whenever I saw her and whenever I left her. She used to beam and laugh with delight. Now there was no sound. My tears were silent, the hurt too deep. I still do not know, to this day,why I did not get on that bed and never let her go.

We then thanked everyone. Assured them we would organise pickup of her things the next day and then started plotting our mammoth trip to tell dad. Cave’s Beach is three buses away, taking up to two hours depending on connections. Once we got there we had to walk up two steep hills which took twenty to thirty minutes and it took longer then because my son had Pericarditis which made walking uphill hell.

As we approached the top of the hill Dad came out of the garage where he spent most of his day on the computer, tinkering with his car and looking out to sea. He sensed something was wrong as I was not due for a few days and Chris normally came down at the weekend with his girlfriend in the car. We managed to get him into the house and I told him. Almost straight away Norma came over. She was wonderful. Kind and knowledgeable and concerned.

My son made coffees all around. Norma told us one of her closest friends had died that morning too. (And more synchronicity, Norma’s mother died a year later, on the same date as mum) I then rang my brother, who had not seen our mum for well over a year, nor had his children, her beloved grandchildren. He was beyond distraught. I comforted him as much as I could from a distance and repeatedly asked him to ring his partner to come home to be with him. Eventually he rang her work and her employer actually drove to get her and bring her home.

I then phoned my uncles. I hope I did it okay. Being migrants we have little family here. I grew up with these uncles and my aunt and my beloved late aunt, they were all we had. Norma went home then dad stirred and phoned his brother Michael in Canada and mum’s brother in the United Kingdom. It seemed to help him to talk, especially once calls started coming in from The New Line, Dooyork in County Mayo. Dad’s family home.

Gen arrived from Sydney, and typical for her, opened her arms to dad and he fell right into them. I then phoned the Trustee and Guardian’s D who told me how sorry she was and to send her all the bills for after the funeral expenses. She knew mum and dad had a prepaid plan. I then rang my co Guardian from the Public Guardian’s office and asked him to let mum’s past Guardian D know. He assured me he was going straight off to do just that. And I asked him to let my witch of a sister know. Though I had no idea what was in store when I asked him to do that. I believe I would have still asked him to phone her. I am damned with a need to do the right thing. It’s a character flaw and gets me into so much trouble. I then rang the funeral home and they arranged to come out the next day. Just before dinner dad got his good suit out. Absolutely no idea what decade it was from but he wanted to know it would be fitting for mum’s funeral.

So imagine our surprise and my horror the next day when the person dealing with the funeral said it was cremation only and that my sister had been on the phone to them telling them to let her know if anything was changed. The obituary was also scheduled to go into the SMH on the Saturday after she was cremated. Too late for anyone to do anything then anyway.

My mum, who had never been alone in her life, died alone in her sleep and was to be cremated the following day all alone. After the Funeral Director had gone I went a tad nuts. I went into the garden and sobbed and sobbed. Trying to hide it from dad, looking out for everyone but myself, as usual. Dad was out on the balcony when Norma came in and found me crying at the kitchen table. The one where we had shared so much together. Where I had sat as I mended my parent’s sheets when I moved up there because there was not a decent set in the house. The one where we always had lunch together when I used to visit from Sydney. The table my son and myself ate dinner at together, long after my dad had gone to bed.

Norma came up to me, asked me what had happened, wrapped me in her arms and rocked me. Much as my son had with my mum when she went into care. I had quite thick long greying hair then and Norma spent a good ten minutes picking bits of shredded tissue out of my hair. Tenderly, so tenderly, a true sister in spirit. While sitting there being groomed by my beloved Norma my co Guardian rang to let me know he had spoken to my sister. His cheery voice sounded alien to me. He could not be talking about how she cried on the phone to him. How she said she went to a priest who said a prayer and was going to include mum in the mass. Because my mum was not going to have a funeral. No closure. No Catholic Canon followed. No chance for loved ones to show how much she meant to them, how she was so beloved.

I think I apologised to the co Guardian who sounded exactly as one would do if a strange woman had just cried all over him on the phone…uncomfortable yet caring and truly in a difficult position. I then had to pull myself together and phone mum’s brothers to let them know and ask if they wanted to view mum. Dad and my brother were going in later to view her so it meant my son and girlfriend leaving the care home where they were trying to pack up mum’s belongings. Not easy as my son broke down there. Like me he thought we would have more time with the fun person my mum reverted to or became because of Alzheimer’s. They went to his flat and found the beautiful suit I had bought mum recently and also bought new underwear to add to the things they brought from the care home. They then had to get the outfit up to the Crematorium in Wallsend in Newcastle.

So my gorgeous mum, whose biggest trip alone was to bravely go to England by herself to see me married over thirty years ago, was cremated alone. But not alone in spirit. Norma and her friends, my Facebook friends worldwide prayed for her at that exact moment. I sat in the lower garden, breathing quietly and deeply as I had been taught in self hypnosis over thirty years before.  And focussed on my mum.  I prayed, personal prayers of gratitude for having the honour of being there in the last year of her life. For the moments we had shared. She was the daughter and I the mother at times. We were friends, sisters, companions and I adored her.

When I finally opened my eyes I had no idea how much time had passed, I was aware however of silence. And deepest grief mixed with a feeling of release. Then the cacophony of birdsong reached my ears. I had been so deep in reflection I had not heard the incredible birdsong at all. Marvelling, I looked up, and there was a sea eagle hovering overhead. Just hovering. I watched it until it was out of sight somewhere over the horizon, this eagle a promise that my mum’s spirit had finally soared free.

Advertisements

My Son

He shops for me

cooks for three

 

Mentors a child

who is a tad wild

 

Torn between duty and love

he somehow manages to rise above

 

And laughs his way

through shaking and jerking

 

To fully live his life

while taking care of his mother and future wife

 

 

I was really emotional after writing the above poem about my son. The way he laughs and jokes through pain and suffering.

He may not have life experience in quite a few areas but he has lived ten lifetimes of pain in his 33 years. Chronic pain, myoclonus and epilepsy together are very hard to deal with but he has been incredibly brave about the shaking etc. Am beyond proud of him. It is a very special club that I belong to, the only parent of a disabled, hate the term, adult child. Lots of financial planning to do.

And then there is the tough love. To ensure the adult child can survive in the world after we leave it we have to be cruel to be kind. Live our lives to the fullest so that the grief, though extreme, will be tempered with joy in how our children remember us. That most of all we set them up for when we are not here. As opposed to when we are here.

I used to take my son off to school, knowing full well he would have to come back home that day. Due to the pain. But I had to show him how to try. How to distract himself and ultimately how to say he has had enough and needs to rest.

It is basically the same after I have gone, hopefully a lifetime of skills and challenges will hold him in good stead. And help ease the terror that often grips me when thinking about his future.

 

 

 

 

 

 

Everyday Angels

Over the ten years or so my parents lived in Lake Macquarie I never met any of the neighbours. I came up several times a year by train and dad picked me up and when I left dad and mum took me to the train station in Wyong to go back to Sydney.

From 2009 to 2012 I was unable to visit as I rarely got out for the day due to my bowel health issues. I communicated regularly with dad, mum was deaf so difficult to communicate with, though she used to shout I love you my Beauty down the telephone. Dad and I would talk politics, science, health, the relatives but I never thought to ask about the neighbours. Typical city mentality perhaps, it just did not occur to me. And apparently dad never mentioned me much. I was indeed the only child whose phone number the neighbours did not have if anything happened to my parents.

So many things did not occur to me, such as why we always had a cooked chicken or fish and chips and package salad for lunch. My mother was an amazing cook. Like her parents before her. As a matter of fact my parents met while dad was staying at her parent’s boarding house. My grandmother learned to cook while in service in a country house. Well she thought it was a country house however she soon found out it was a top brothel. Grandma later became very Victorian in her obsession with modesty in her girls. Mum was exceedingly modest. As am I. I think I have only showed cleavage twice in my life. Once in my fifties and again a few years ago. Could not handle the looks either time so covered up with cardigans!

It makes sense of grandma because she would have seen women and girls in such a state of undress. However mum instilled this into us too. I am hoping to break free of this in my sixties! Never had a problem going braless and luckily as a C cup I can do that without my breasts dropping. But I cannot if the dress is semi sheer as too conscious of the looks from older men up here.

When my son and I first arrived there in early 2013 we met the Public Guardians for both mum and dad, the case manager for Calvary Silver Circle as it was then known and the local doctors and specialists who looked after them.  It was full on, especially since I had been very isolated before my Colostomy surgery in July 2012. However I love meeting new people and I decided to look at this period of my life as unpaid employment.

I would stagger out of bed at 8am every morning saying to myself oh my God oh my god I cannot do this….several times  then I would splash my face with water and go downstairs and do it. Dad was normally out on his morning walk and mum dozing in her chair in the family room. I would get a cup of coffee and take an hour to nibble a muesli bar. I would pretend to doze along with mum but all the time aware of what she was doing. My stomach was very unsettled with my Hashimoto’s Disease overactive instead of under active and I had Type Two diabetes without knowing it yet. I lost a lot of weight.

Around 11am I would take my son up his breakfast as he is too dizzy in the mornings to manage steep stairs. Then I would complete my toilette and apply lipstick, bright red like warpaint. After tidying the master bedroom that I slept in (because I needed the ensuite to manage my Ostomy correctly) I went downstairs again, ready to face the rest of a very long day.

One of the saviours of my sanity that year was Norma, the neighbour who lived opposite. She was very wary of me at first and later it turned out she had been told by my sister not to believe a word out of my mouth. My evil witch of a sister managed to move back into the house after dad’s stroke in 2012 as I was recovering from and being educated on my Ostomy.  Managing my Ostomy was no easy job, it took many many months but kudos to Carol Stott the most amazing Tough Love Stoma Nurse ever at The Prince of Wales Hospital Randwick. She is just astoundingly knowledgeable and also open to different methods if need be.

Norma quickly realised she had been misled in the six months my sister “looked” after our parents and how my sister either misunderstands everything or deliberately misconstrues things.  I am not a Psychiatrist so I cannot diagnose her but she definitely has something wrong…and can be incredibly violent too.

The wonderful Norma and I became fast friends, allies in looking after my mum especially. She had much experience in Alzheimer’s with her mother in a care home for over ten years and her younger sister with Younger Onset Dementia also in a care home.  The knowledge and skills she imparted to me over many a cup of coffee at my parent’s kitchen table was priceless. Learned at great cost and the wisdom shared with an eager apprentice in the art of becoming a dementia advocate.

I actually told her she was the sister I deserved and never had and that I valued her so much. She helped support me through my vicious divorce proceedings. She stood by me when my sister left a vile letter questioning my competence and sanity in dad’s letterbox. And after I moved out early 2014 she kept an eye on dad each day. If he did not open the smaller door to the garage by 7 o’clock she would phone him. We were in regular touch by phone and saw each other daily during the four days I would spend there each weekend.

It was a difficult time for me as dad would not go into care though he was becoming increasingly erratic and doing very risky things. Some of the care workers found him walking in the middle of the road halfway home from Swansea, which is over three kilometres away! I was spending half my time with my son in Wallsend looking after him and when his girlfriend came up at the weekends I would stay with dad. It took me three buses and twenty five minutes walk up two steep hills to get to dad. With my Small Fibre Neuropathy now and mesh damage affecting my Pereneal Nerve it is hard to imagine how I managed it for a year before he finally went into care, as well as afterwards while I looked after the house for the Trustee and Guardian NSW who manage my father’s financial affairs. I was literally torn between my son and my father. They both needed me. One was kind and one was volatile. Both were dependant on me for so much. Without Norma and the angels from Calvary Silver Circle as it was then known I do not know how I would have managed.

My dearest Norma was diagnosed with dementia last year. I followed her concerns and then her visits to the Cognition Doctor by texts. We talked on the phone about everything that she and her husband were doing to cope with this together.

I am afraid I had a moment of sheer despairing fury when I found out. You have got to be fucking kidding me universe…. my beloved Norma cannot have this fucking  disease too. Because unlike mum she knows what is going to happen to her. She knows the pathway this disease will take. How cruel is it to know? Or is it helpful as one can plan? I have no idea. I just know that I love her. And that I grieve for her before it is even middle stages…. because she knows. Her family know…what is ahead of them.

However I will not let grief get in the way of helping in any way I can, giving her husband a break, visiting art galleries together or going to Art Therapy. At present she is travelling. They went to New Zealand by ship over Christmas. What I love so much about Norma & Norm is that they live life to the fullest. It is both of their second marriages. After over twenty five years with previous partners they do not waste any time. They value their families and travel to them to spend time with them. One of the reasons I really want to grasp life with both hands now I am off my walker is due to Norma. She deserved so much better but she is grabbing life and creating memories for her family and loved ones now. While she still can. We could all learn from Norma.

 

 

 

 

 

 

 

 

 

 

The Worst Day Of My Life So Far

The day I put my mother into permanent care was so traumatic for both Chris and myself that it has taken me over four years to write about it. Dad, who has bad rage issues due to stroke damage, had been beyond impossible for over five days. He had been on a violent, paranoid, psychotic bender triggered by my informing him of the cost of my mum’s care home bond. He had told me she was NOT worth the amount of money involved. I had our lovely neighbour Norma over and she could not convince him either.

We suspected some dementia in dad then but it was his rage and paranoia that were the things we were most afraid of. And had no escape from. And my unrelenting honesty and attention to detail and doing the right thing by my mother caused enormous strain between us over the bond.

The day started as had the past few except that Christopher’s friend Genevieve had returned to Sydney that morning. When I came downstairs and into the kitchen Helen the AIN was there. She had already showered and dressed mum. Dad pulled mum up and said come on we are are getting away from Kathleen. And he screamed at me. Poor mum, being deaf, had no idea what was going on and was picking up our body language. She shrugged him aside and said she wanted to sit with Helen and me.

Dad ran around the room in a strange off balance way. I was terrified he was going to fall. Even more terrified he was going to punch me. Meanwhile I was presenting my neutral face and non threatening body language. Trying not to provoke anything but being ever aware of where dad was and what he was doing. Eventually he ran off down the steep driveway. I saw him running down the hill like a crazed leprechaun.

While he was out I rang the GP as I was concerned he was going to have another stroke. At some stage Helen rang work and told them what was going on and that she was frightened to leave mum and I with dad alone. They told her to call the police if necessary but that she was to leave and go to her next job. Helen left, sobbing and telling me she was so very sorry.

The GP rang dad after he got back and tried to talk to him. Dad shouted at him and hung up. He came storming through the door from the garage, slamming open the door so hard it knocked a large photo off the wall and causing a dent in the plaster.

He launched himself at me as I was sitting reading at the dining room table. He screamed at me that Ye mean nothing to me. All three of Ye. Ye are nothing to me. Get out. Get out now.

I quietly got up from the table. Gently putting my hands out to him and said. Dad what do you mean? I am your daughter. He said then do your job. I said I am doing my job. My main job is to make sure mum is safe. And that is why she is going into care today and that I am staying until that happened.

He screamed at me. Ran over to mum and tried to drag her into the garage away from me. She kept saying stop it Tom. And sat down again. So he screamed at her that she was going to be put away today. Obviously she was not supposed to be told as she would be frightened and could not retain the information anyway. She started screaming. And screaming. And screaming. I will never forget it as long as I live.

Dad then ran away again. I got on the phone to the Public Guardian D who was in charge of my mother. She had already left her office to try to reason with dad here in his home. Christopher was sitting on the edge of mum’s chair, holding his grandma in his arms and rocking her like a baby until she stopped sobbing.

Meantime Tony from Belmont Hire Cars arrived. He was due to pick us up at ten. So we could settle mum before lunch. I could not get past dad who was patrolling the garage. I was not sure what would happen if I entered it. Eventually I went out the unused front doors and hung over the balcony looking at the sea. Tony sauntered up and joined me. He is ex military. A big fit guy and was concerned leaving me alone with dad. He stayed as long as he could but had another job to get to eventually. He had told me before several times that I was a strong woman. I did not see it nor feel it. When he left he gave me his card. We hugged. He said to ring him if I ever needed to talk.

D arrived and was sitting with dad in the garage talking. It was my parents favourite place to sit unobserved while they viewed the ocean right up to Nelson Bay some days. I had the night before asked Chris to come downstairs to be there when D came. To help mum and I get ready as well for the 10am am pickup. There was so much to do and only us two to do it. Unfortunately I found out later dad had blamed Chris for the call to the GP. He thought Chris was trying to have him put away as well.

Christopher and I popped into the garage to see if we could help and as we walked in dad started on him. Shouting here comes the idiot. And more. A lot more. Poor Chris was just trying to help his grandma. Who he had only seen twice in ten years due to his own poor health, which neither of my parents recalled then. Well Chris had taken so much abuse from his father I was not going to let him be spoken to like that. Not while I had breath in my body. I quietly said. Dad. Please do not call my son an idiot. He is trying to help. Of course dad went totally nuts then which was why D asked us to leave.

I said I would be next door with mum. Dad taunted Christopher all the way out of the garage. It was awful. Though apparently he did it all the time when I did not see it. Reminiscent of Christopher’s father. Eventually D came back into the lounge room. I turned around and I saw her recoil at the anguish written so clearly on my face. I then saw her face harden, as she had to, to be able to deal with her job. She asked me to call Tony back and get the hire car out. I was in such a state all I could say was that he had another job to go to. I could not think. Could not reason. Could not move. I heard her voice coaxing me gently. Saying she thought it would be fine.  So I walked over to the phone and rang him. He said it would be an hour.

Meantime I made morning tea. Went upstairs and tidied up a bit. Mum was sitting on the balcony in the sun for the last time. Watching and absorbing the incredible natural beauty of that place. I saw Tony arrive and came downstairs. I went into the garage and said I am not going with you dad. This is your responsibility. I am not having you saying to me from now on that I put my mother away. I won’t do it. And I went and sat with mum.

D came in again and sat down opposite me. I was annoyed with her by then. She had had words with my son earlier. Telling him he could leave if he did not like the way his grand father treated him. That it was not his home it was his grandads. She never got that I had been Christopher’s carer from when he was three months old. I had protected him until a few a months previously from violent men. And I had let him down by trying to get my mum to safety. If he went I would be going. She never understood that until months later.

She said that dad needed me. He could not do this by himself. I said he would have to. Dad then came to get mum. Mum shook his hand off and turned to me. And said Kathleen, my Beauty, will you come with me? I said of course mum, of course I will.

I am sobbing as I write this. I have never addressed the trauma of that day. I cannot even put it on a scale of trauma. I adored my mum. I felt I had let her down in not discovering her Alzheimer’s sooner. I was determined to make the rest of her life count. See that she was safe and free. From dad especially. And his rage.

I grabbed mum’s shoes as she had slippers on, and my handbag and held her hand and we walked down to the hire car together. D had already put her things in the boot of the car. Mum had her handbag and the last pretty cardigan on that she had ever knitted. She had forgotten how to knit at least ten years before. Dad got into the front seat. We were off towards our new normal.

As the car pulled away from mum’s last home we both looked across to Norma’s house. All the windows were curtained and nobody was in sight. The whole street looked deserted. Public Guardian D was still there. (She said afterwards she should have gone as well)

Once out of Swansea my mum exclaimed that she was not dressed properly as she had her slippers on. I had moved so fast from when mum had asked me to go with her as I did not want her getting upset again. Of course my brave gentle yet feisty mother surprised us all with her strength and grace.

I produced her pretty cream dress shoes with a flourish and she smiled at me and said “now then”. Her little expression to us when happy to see us or pleased with us as children. We chatted, or rather mum chatted and I agreed or smiled at what she was saying during the journey. Meanwhile absolutely dreading what was ahead of us. A month ago she had gone to respite there and I can still hear her crying like a preschooler as they walked, almost dragged her away from us. “Do not leave me here without my parents. Mummy. Daddy do not leave me.” It was awful. Gut wrenchingly so especially as dad was crying. Sobbing.

Once we were on the Freeway the trip was smooth and before too long we were back at the care home. We informed them we were there and the gorgeous RN L took us all to the house where mum had spent the two weeks in respite. When we walked in the residents were still seated after their lunch. Mum saw a few of the people she knew and they remembered her too. She sat down at the table with them. Quietly put her head in her hands and wept. “Steady on girl”. “Enough of that Pat” and lots of other caring encouraging words were uttered. Nobody moved from their chairs but they patted her or reached towards her. Her special friend Audrey especially encouraged her to be strong. It was incredible.

They put a plate with a roast meal on it in front of mum and the RN said it would be a good time to go. Mum saw us and realised. Pushed her chair back and in her best Greer Garson Mrs Miniver voice said that she would see us to the door. She hugged me and stroked my grey hair and said she loved me. Called me her Beauty again. Then she turned to dad who was sobbing. She put her arms around him and said “ It is alright Tom. It’s not your fault. I love you”. And she comforted him.

I escaped through the secure door leaving dad behind. I was sobbing. Tony the owner of the hire car was waiting outside and helped me to the car and then he helped dad. We drove home in near silence, with just the sound of my muffled weeping from the back seat

 

 

 

 

 

 

 

How It All Began

Our son was born in 1984 at the Paddington Women’s Hospital which has now been converted and redeveloped into housing I believe. I had been in hospital for over a month with Pre Eclampsia. My blood pressure went extremely high one night and the decision to induce was made.

I had been under a Professor there since the mid seventies. We trusted and were confident that everything would go well. My bestie from school was coming after she finished her shift at POWCH. She is a maternity nurse and had been involved in lots of births so I was happy she would be there as my support person. Especially since my husband was a little squeamish and not much involved in the antenatal care etc.

I was transferred down to the maternity delivery area and very quickly induced by my waters being broken with something I described as a knitting needle being shoved up my vagina. And I love knitting. In fact I was totally obsessed with knitting back then! I was told later that it was more like a crochet hook!

All the nurses who worked with my friend (whom I had got to know very well over lunches in their staff room) agreed with her that nothing would be happening as it was a first birth and was going to take a while. So she arranged to come straight over at five pm. She did not make it in time because unfortunately when they put the drip in which causes the contractions I think someone must have sped it up by accident. It was going very fast. Within thirty minutes I had horrid backache. Was not dilated enough though so the nurses and Prof and Dr took off. It was an unusual day. High high volume of births. There were women in the corridors giving birth.

Three and a half hours later and our son was born. And almost strangled to death. The only help we had was early on. After I was given gas (which did not agree with me) and then an injection, the only person to help us was a young med student who had never witnessed a birth before. Luckily he was there and he managed to hold onto our son as my husband ran to get help.

They managed to get his cord from around his neck. It was very hard to hold for so long without pushing. His head was literally out and I had to stop pushing. Not sure if that had anything to do with my issues later. The whole delivery process certainly did though.

Within months I had bladder incontinence and also our son was very ill. He developed a Proptosis and was sent to a lot of specialists. He became so ill at nine months it was not known if he would be retarded or not. Because of the lack of support from family here (my friend had moved to Northern NSW so was unable to help) my husband decided we should go back to the UK to live.

Once over there I was tested by a Urodynamics team at a big London Hospital. They said my bladder had been dislodged by the birth. They suggested I wear the huge pads that old people wore in nursing homes. They would not operate to repair this as I was too young and might want other children.

During the next year our son became much better in that we knew he would not be retarded by the hundreds of Myoclonic Jerks he had daily…. however he became afflicted by severe head pain. Cluster migraines in a three year old are not very pleasant. I spent many a day with him laying across my lap with him putting my cold hands on his forehead bless him. I will not go on about that. It is his story and it’s still with him even now. He is on a disability pension and has been since he was fifteen when the school system basically gave up on him.

When he was four a different surgeon asked if I wanted more children. Due to our son’s illness. I said I could not put another child through it. So he scheduled a Hysterectomy and Burch Culposuspension to move my bladder and remove my uterus. It was an horrifically painful operation and especially so as it was in the days before PCA machines. After the surgery I was given a shot of Pethidine before doing anything so I was able to move.

The surgery was successful. I think I was in for about ten days. Once I returned home my husband went back to work and I looked after our son while I recovered. It was gruelling but I was young enough, 32, to recover quickly. Sex was better than it had been for a long time. Hard to keep my husband off me actually.

We returned to Australia a few years later when our son was in year one at infants school. In the early nineties we started working at the church we attended. High Anglican and just across the road from our son’s school. I had already been helping the Female Deacon with Scripture in the local schools and also with Sunday School so becoming Co Vergers seemed a logical move. Especially since my husband had always professed to want to train for the priesthood. In the end I actually was more suited to the Pastoral kind of work and my husband looked after the church. I looked after funerals during the week when he was at his other job.

The whole time we were there. Ten years, I had more and more trouble with incontinence. Bladder and bowel. I just loved taking scripture classes. There were so many needy children who loved and needed extra attention and love. They actually used to stop me in the street and introduce me to their mums. Who knew who I was apparently! However I was so nervous of having a bowel accident in class, of which I had many outside in the street, that I said I would have to give it up.

We were problem solvers so I ended up assisting our very first female Anglican priest. A young girl in her late twenties who was sure she had God’s ear. Or rather he was talking into her ear! She was sure she was not meant to marry and not to work with the ill or elderly. God told her so. I said I think God has different plans for you. I see you as a Chaplain. She laughed. No way.

During our ten years living and working at the church she met a divorced man and fell madly in love with him and married him. She was then basically not allowed to work within the church. And she became a Chaplain. At a huge hospital I attended. And she was and is brilliant at it!! We had many a laugh about her profession that she was called not to marry over coffee in the hospital canteen.

In 1999 I had a sudden gallbladder operation and then I went into surgery with the lovely Dr Eisenberg who was consulting with my then bowel surgeon, the late Dr Philip Douglas. I had been diagnosed with a rectocele and an enterocele by then. He pulled out during surgery after finding too many adhesions and also not knowing how to do a complicated surgery without shortening my vagina. He said I was too young for that.

My husband wanted me fixed. He liked me to be on top. He liked deep penetration. He like to go doggy. He liked to hurt me and he could not do that with two prolapses filling the vagina. He had always wanted anal sex and so he started that. Without lube. It was horrendously painful. Especially now that I know I had a weakness of the wall between vagina and rectum.

So the next year my GP sent me for a second opinion. A top surgeon Dr Andrew Korda at RPAH. And his colleague the wonderful Prof Michael Soloman. Dr Korda said I could not go on like that. He said the backache and bowel incontinence would get worse. That this would fix the structural problem and should hopefully help the rectal incontinence. Dr Soloman was not so sure. He said there was a colostomy in my future. Not too distant either.

The surgery was horrendous. The pain off the scale. I nearly went mad with it. I was a patient at the POW pain clinic then. Had been for some years for my spine. The glorious Dr Khor, whom I still communicate with by email and who insisted I make him one of my lush quilts, told me afterwards that it’s one of the most painful surgeries there is. I had the Posterior Repair done using my own tissue. No mesh which we now know to be causing so much trouble in women all over the world. Dr Korda folded over my vaginal tissue and sort of seamed it. All the way up. Not sure how long the vagina is cause it stretches. As a Quilter/designer I understand the mechanics of it. No mesh was fabulous but unfortunately the seam became a huge ridge which pressed even more on my rectum so my rectal incontinence became worse, much worse. Dr Korda felt or hoped it would settle down but unfortunately my husband decided he could not wait for the healing. He forced sex on me. While the stitches were still in there and while I was still in incredible pain in the wound. So much so that I could not sit on my right buttock for many many months that year.

All this was happening to the backdrop of the Sydney Olympics. Our son being told he would not have enough work in to sit his School Certificate. He was doing Distance Education by then as no school could cope with his absences due to his pain. He was well ahead of himself. Doing HSC level in year nine. But he was going to be short a few packages. So he pulled out of school and continued to educate himself with the help of the internet.

Our church was changing a lot of things around so after a family conference we decided to leave. My health was not good. Not after the surgery and my birthday present from my husband. A really nasty sexual assault. Number two but much worse. Well he thought he was wishing me a happy birthday. But I was crying and I inched myself backwards trying to get away from him until I was trapped between him and the wall. There was nowhere to go. I had cried and pushed him and pushed him and he did not notice, too involved in his personal pleasure. His pleasure involved my pain after the first few years of our marriage so this was nothing new. But I had an open wound. It really hurt already. Obviously no lube. My god the dryness. It hurt so much. There was blood everywhere. Stitches came out. It was in my mind a brutal rape. My therapist later said it was. She was disgusted by him. Did not really want me to discuss him. I have only told a few people and that is in the last few months.

He finished and pulled himself out of me and went to the bathroom. Very happy. When he came back I was doubled over in pain and crying. Trying to keep things quiet so our son did not hear anything. He asked what was wrong and I said I was bleeding and it hurt. He said oh it’s just not worth it. And stormed off. That was my birthday 2000. He never touched me again. Those brutal assaults were almost worth it. Except for the further damage they did.

So I am going to the surgeon on Thursday. No doctor has examined me for 17 years vaginally. It just hurt too much. But I need to get on with my life now that it is five years since I finally left “him.” I would like to experience penetration again. Not sure why but it was always my favourite part of sex. That gentle loving possession by another. I miss it. And the closeness. And would like to have some good, clean fun.

So am going to check if I need a reconstruction or just stretching with some sexy gadgets! I had similar to those through Professor Vancaille in 2000. But his ones gave electric type shocks through whole pelvic area. Not enjoyable at all. No fun.

I now have an incredible amount of scarring on anterior and posterior of vagina. Which is causing a lot of spontaneous orgasms. The ones in the middle of the night where I have a full bladder are excellent. Full on dream with being penetrated and made love to. Orgasm comes naturally and wakes me up and goes on and on. But the daytime one’s are really painful and I need them fixed somehow. I have read Botox can work on them. I also read these could have been made worse as I was sexually assaulted for many years as a child. Had many objects shoved up a very tiny passage. I can still feel the marbles she used to put up there that she made me hold onto. And the licking. I was less than eleven. It was from age seven years to eleven.

So I am going to be very frank with. $&$&$& on Thursday. I am told he is very very gentle. Which is great because last time I was examined it was agony. But that was a long long time ago, seventeen years. I am ready for this. The timing is right. The Small Fibre Neuropathy and Mesh pain is under control now using the nerve pain cocktail. I can handle this. So much so, I am going by myself. I am my own best support. I have always had to be. My son has been fabulous. But this is not something my son should be part of. He has enough on his plate with his own health. I know he will be thinking of me and wanting the best. He is very protective of me. Funny thing is if I get things working again he is going to be so embarrassed. Cause I will be sharing my sex ploits with him. As all mothers should. Not. We are very honest about these things. We can talk sex for hours. And I know one thing he was very hurt by with his father was that he did not take me up on my offer of having his own life many years ago. When I offered him his freedom after the surgery. My son lways thought this should be my time and there is a limited window now I am so old lol. That is me saying I am getting old, not him!

 

 

 

 

 

 

 

 

 

 

Joyce

Having a very late lunch of multigrain bread and black cherry jam. And it reminds me so much of my late mum. She always loved bread and jam. I however just ran out of cold meats and could not face more of the tomato flavoured tuna my son bought me. Why flavour tuna?  It is so good as it is with a dash of mayo and some freshly ground black pepper.  Mum preferred red salmon. Had to be tinned, with a dash of vinegar!

So as I was eating my feast….and it was scrumptious and a treat…I remembered mum and what happened before she went into care in 2013. We would see her get up and wander, much like a living ghost, into the kitchen. There she would take dad’s bread out of the bread bin and make a jam sandwich and a cup of coffee. This was quite the accomplishment because by then she had forgotten about the need for plates  or spoons to get the coffee out of the canisters. Or how to use the microwave to boil the water. She mostly used her hands for getting coffee out and then sprinkling it into a pretty mug. Those hands were rarely clean as she had bowel incontinence in the last years and had Celiac Disease.

She had her own gluten free bread but said “yuck” when offered it.  I think I tried to hide dad’s in the end so she did not get into it. The reason I mention the coffee and sandwich making is because it was on a loop, all day. No sooner had she sat down and eaten it than she was thinking of getting another one. We never had enough bread or milk in the house to satisfy her desire to make sandwiches and coffee, bless her heart.

My son went for long walks around the lake and beaches and used to bring her back bread and milk.  Once he came back with a gigantic tin of Nescafe coffee. All was stored in his backpack so that he could be hands free for the long walk back from Swansea to Pinny Beach.  Earlier on he fell down a ditch and everything fell out of his shopping bags so that is when he decided to use the backpack!

The day that is imprinted on my memory is when there was no fresh bread out because mum had devoured it all. I was sitting knitting trying to look busy but actually always aware of her, where she was and what she was doing.  She shrugged when she saw the empty bread bin and went to the fridge and looked in there for a long time. Shut the fridge door and stood there vacantly for some time. Then something must have sparked in her brain because she turned back to the freezer side of the double door fridge. Delighted with herself she found a loaf of frozen bread and proceeded to pry some pieces of the bread apart and then buttered them and jammed them up!

This was the funny bit, the rest was poignant, the stuff of madness. But not madness, Alzheimer’s. Mum tried so hard to do what was easy to her even ten years before. She watched what we did and aped that. Her biggest challenge was the wooden Venetian blinds which went along the front of the huge house. Each room had bay windows. Making smaller venetians necessary at the sides. Mum would start on the right and work her way across, closing them each evening. It took her at least thirty minutes to do it.

She would go to the next window and look at the venetian. Touch it. And stand with a baffled look on her face. Then she would look at the one she had just done and copy that. With each blind, twelve blinds in all. You could see she forgot which direction to close them. She kept checking back. This is how she covered up her Alzheimer’s for so long. Copying things, reading body language of others. Being eccentric already and almost totally deaf so that people did not expect her to join in conversations all masked it for so long.

The frozen jam sandwich also showed the funny side of mum. She brought me so much joy at a dreadful time in my life. A time when my son and I left everyone we knew behind in Sydney. We went for a short period of time and ended up still here five years later, mum long gone now and dad unwell with stage four cancer as well as stroke and dementia damage.

How was the frozen sandwich? Absolutely awful. But my mum took it in her stride, pulling a face and after saying “yuck” she threw it in the bin. Came smiling over to me. Kissing me on the top of my head and saying “my beauty.” Pronounced in the Lincolnshire way as booty. As her mother had done before her.

 

 

 

 

When I Wanted To Crawl Away And Quietly Die In A Ditch Somewhere

In September 2015 I almost died of a parastomal hernia which had been trapping my bowel over the previous six months or so. A Stoma for a colostomy, Ileostomy or Urostomy creates a weakness in the abdominal muscles when the stoma is formed

I had my Ostomy surgery in mid 2012. The day after my Mother In Law’s funeral. Almost immediately the stoma receded and I had immense trouble getting a system to fit. This is usually the first warning sign of a parastomal hernia. It look many months of the Stoma Nurse, my Ostomy Support Groups on Facebook and myself to brainstorm a solution. But it was never right

Over the next three years I had horrendous pain near the stoma. In 2015 I was in and out of hospital for bowel obstructions repeatedly. Having the dreaded Nasogastric tube inserted to decompress the bowel

August 2015 the long anticipated wedding of my best friend’s daughter arrived. My son and I stayed with his fiancé in Sydney and we feasted and had a wonderful time before and after the wedding

I had bought a special teal jersey dress which had an attached coat front as I was so conscious of my swollen tummy. But had no idea what was about to occur. A few days after the wedding I had a small really small fish burger my son cooked. And I belched before I had eaten more than a few bites. My son tried to get me to eat it but I just could not. The next day we returned north. Myself to Lake Macquarie and Chris to Wallsend

A few days later Chris and Gen came over as usual on a Saturday to help with my food shopping. By then I was barely eating. Though they bought a Jamie Oliver Lemon Pie to tempt me. After they had been there an hour I laid down on the bed to try to hide the waves of intense pain from them. Soon after I started vomiting disgusting brown stuff. Chris was running around trying to find something I could throw up shitty vomit into. No luck! I had only moved into my little cabin a few weeks before and did not have many things there yet. In the end he used one of my new Corelle cereal bowls. We have not used it since!

They eventually talked me into staying with them in case I needed to get to John Hunter Hospital. On the way I asked them to take me to Emergency. They quickly found me a wheelchair and the Triage nurse took one look at me and somehow managed to find me a bed

I will not go into the details in case something similar happens to you. What I will say is I panicked. And I do not give up easily but I just wanted to find a ditch somewhere and crawl away and die. I had already sent Gen and Chris home as I did not want them to witness anymore of the horrendous suffering. Massive waves of pain like my Stoma area was being ripped apart. Alternated with vomiting noxious bowel contents. Almost asphyxiating on them as they had not inserted the right size NG tube. And they had not turned on the suction. So basically I was vomiting myself to death as my large and small intestine were kinked inside the very small area of opening behind my Stoma

I had one on one nursing care for over eight hours. Dreadfully, dreadfully ill. Four or five days later one of their top private surgeons operated on me as an emergency and he did an unusual procedure whereby I had a scimitar shaped wound under the devices I wear for the Colostomy. And under the wound and in the abdominal wall he inserted MESH

Two years later I have a Drop Foot, weakness in my legs and trapped Femorogenital and also Ilinguinal Nerves. As well as a trapped Pereneal Nerve. This causes horrendous abdominal pain. Hours on end every few days. Much like when I nearly died in 2015. I have been Cat scanned. No obstructions. No hernia. It is the MESH. It bonds with anything near it. It traps nerves and severs them. It causes horrendous injury to so many people and yet it is still being used today

I was fortunate to see a Professor of Neurology who admitted a lot of my issues were likely the mesh. That is highly unusual as there is usually a conspiracy of silence and of intimidation of patients. A few weeks later I saw a Pain Specialist and he confirmed nerves are trapped. He gave me a drug cocktail which remarkably is helping the nerve pain in legs and abdomen. However I will need breakthrough pain meds and Surgical Ablation of these large nerves yearly

In 2015 I asked if the mesh was safe to use. Even when I was readmitted to Hospital with sepsis a week after I had returned home, the surgeons were not saying anything about the mesh. Then on a Saturday a youngish British born surgeon came in for the second time. He sat on the bed and said he had a very bad feeling about this. He said these things go horribly wrong. He was very very strident about getting it reversed.

After he left I burst into tears. I had been through a really traumatic event. A very painful surgery and was facing a removal of mesh and a bigger op to repair hernia? I returned to my son’s to recover the next day. With three months of antibiotics.  A week later I saw the stoma nurse and the surgeon who operated on me. He asked why he had not been informed that I had been readmitted with an infection

He then examined my wound which had quite a bit of infection draining still through areas that had opened to release it. He reassured me the infection was below the mesh as the wound was so deep. So no issues. Yet he arranged to come in for my next checkup on a Public Holiday. I saw him on the ward which was also highly unusual  he also said I could stop the antibiotics

It took six months to recover properly from the surgery and infection and then I started having similar waves of pain to the left of my Stoma. Where the mesh is. Long story short the mesh has caused horrendous pain and suffering. It has cost me my ability to be as independent as I like to be. I am fiercely independent by nature. Hate with a passion being seen as ill or different in any way. For over a year I had to use a walker to get around. Was even contemplating giving in and getting a wheelchair

The Nerve cocktail of Cymbalta and Lyrica in low doses is working miraculously. I can walk again. Still cannot stand for long periods. But the improvement is nothing short of life changing. My memory is much better. I am sharper now after reducing the huge doses of Lyrica I was on. What is surprising to me is that I had no idea how much pain I was in. My son knew. He caught me in an unguarded moment. And was horrified of what he saw on my face. The Neurology Professor was right when he was brainstorming why I was having trouble walking. Imagine being in so much pain you just cannot walk. It’s astounding even to me

I have recently joined some proactive groups on Facebook and their blogs. Things are changing. New Zealand has banned all mesh. Senator Derryn Hinch is supporting banning of Transvaginal mesh. The next big wave of Lawsuits against the Mesh manufacturers is going to be Hernia mesh like mine. I will be joining the class action lawsuits as the ONLY way to stop this is to hit them where it hurts

Unfortunately what we have discovered is that a lot of younger surgeons do not know the older methods of operating without mesh. It’s a nightmare for so many already affected people and we need more visibility to protect others from having mesh. It is possible to have surgeries using “own tissue”. If one can find an older surgeon skilled in this

My mesh is unable to be removed now. No idea what the future will hold. Any bowel obstructions I do have to go to Emergency as this is really dangerous. However the freedom after over two years of agony and weakness has fostered in me an embrace life attitude. Because we do not know how long we have here. We should not waste a second of it. Be brave. Embrace life head on. Instead of saying “why me” I say who else can I help with this problem? Who can I save from this disaster in the making? It works for me. I am quite content with my life now. Acceptance of my condition while fighting to protect and support others is key for me. Everyone is different however.

 

All content covered by Creative Commons Attribution-NonCommercial-NoDerivs 2.5 Australia (CC BY-NC-ND 2.5 AU)