He Had Never Left Us

On This Day five years ago my mum went into her only time in respite. It had been a desperate time for my son and I. Still traumatised by what we had gone through in Sydney, trying to do the right thing by mum and without transport most of the week it was a nightmare trying to get things organised.

D the Public Guardian had taken on the sourcing of care homes and after her saying there were literally no permanent places available within Lake Macquarie City I told her Newcastle would be fine. Within a day or so she called to say Tinonee Gardens in Waratah, Newcastle had a respite bed coming up a few weeks later.

One of the home care aides had told us stories about being sworn at in many different languages at Tinonee Gardens and that she had enjoyed the patients there. So I had some background from a trusted person and it was getting desperate at home with mum walking down the steep hill, forgetting she could not get back up again because of her heart condition. Also her anxiety and sundowning was off the charts. She would antagonise dad on purpose at times and f we had not been there I could see she would be black and blue again, as my relatives had told me she was before dad’s stroke.

We simply had to get her to safety and give dad a break away from her. So we accepted the bed and I then started the preparations for her admittance. This was hard or me as there was so much paperwork. Since I left my emotionally abusive husband earlier that year I had been so traumatised that I had trouble with paperwork and phone calls. Which made this very difficult.

I had to phone mum’s GP and get paperwork from him. Which was no easy task as he was never available to do it. In the end the day before mum was to be admitted I went into the surgery and made such a fuss that the office manager immediately found a GP who would do it for me. I had been very forceful about mum losing the bed and it would be their fault if so.

Then I popped next door to the wonderful Swansea Amcal Pharmacy. They of course were well prepared. The pharmacist and all the girls wished mum well and reassured me that everything would be okay. They delivered my parent’s medication to them weekly and knew how isolated my parent’s home was. Nestled against the bush, with no transport, and tri level. It was beyond unsuitable for my stroke damaged dad and demented mum.

I had to go out several times to get mum clothing as she barely had anything to wear when I moved in. With the help of Vinnies I managed to prepare her enough for her two weeks in Respite. Luckily G was up for several days so we were able to be driven to Swansea to shop and do all these things.

Dad kept saying something would go wrong and mum would not be able to go and sure enough, on the morning mum had to be there I heard a clatter in the garage. I waited a few minutes but heard nothing so continued to gather everything together into a bag that I had hidden in the laundry so that mum would not be alerted to anything.

As I came back into the kitchen dad came through the garage door into the family room. He was holding his arm up in the air and crying in a strange way. Almost hyperventilating. I then saw blood pouring down his arm. As I went towards him I grabbed some clean tea towels and used them to staunch the blood flow.

Dad was crying so hard I could barely understand him but I worked out that he was saying that mum would not be able to go now. He was shuddering with shock. I managed to get the blood to almost stop by holding his arm up and applying pressure. Then I had a look. He had shredded a piece of skin down his arm like cheese off a grater. About a centimetre deep and just hanging off his arm. The whole way down his forearm. When he saw it he started shaking again. I assured him it would be all right and wrapped his arm again and asked him to hold it while I went to get Helen who was showering mum.

She had just got mum out of the shower and we got her dressed together and then Helen came back to help me with dad. She came through and asked him what he had done now. I had found bandages and gauze swabs and spray on antiseptic in my mum’s amazing FirstAid drawer and had them on the counter.

Between us we looked after both of my parents as we filled a bowl with water and I swabbed dad’s arm to see what needed to be done. I had found some small scissors in that drawer and had put them in boiling water and then Dettol. I then cut the strip of skin off and we had a good look. It was going to be tricky to bandage but I knew elderly people’s skin was very fragile and could tear easily so I felt confident we could treat it ourselves.

The main thing was to calm him so I made him sweet tea and mum a coffee. Then we applied all the products. Starting with spray on antiseptic and gauze and finally the bandage. By the time we had finished he was just shuddering. I hugged him and said it would be fine. We would get mum there. He started crying again.

Eventually I asked him how he had hurt himself and apparently he had put his bad foot on a chair to do up his shoelaces and had fallen over. Slicing his arm on the printer stand.

I was speechless but managed to keep a calm demeanour. Dad had only been using velcro shoes since his stroke. Whatever made him go back to ones requiring two hands? He only had one functional one. I went to get his good lace up shoes and put them on him and laced them up.

While all this was going on Tony the owner of the hire car business had turned up to take us to Tinonee Gardens. It was a thirty minute drive and we needed to be there around lunchtime. So as soon as dad was calm and mum distracted I gave Tony mum’s bag to hide in the boot and then I told mum we were going out. She grabbed her handbag, very excited.

Helen left just before us and we locked up, then started on our first journey to the facility. It was a pleasant trip, mum chatting to me and not expecting a response due to her deafness. When she was not talking I encouraged dad to talk to Tony who was experienced in these journeys. It was very stressful and non stop for me, keeping everyone on an even keel. Dad was fine by then, hard to believe the state he had been in a few hours earlier.

We arrived at Tinonee and told Tony we would call him when we were ready to go home. Mum looked suspiciously at the office reception but was okay when the RN Laiju arrived to take us to Daffodil, the building where mum was going to spend respite.

By then mum was fractious, angry and suspicious. She kicked dad a few times as we sat waiting on a settee near the dining room where residents were sitting waiting for their lunch. Eventually the NUM Michelle arrived and she knelt on the floor and took notes on mum’s medical needs. By the time mum had her blood pressure taken she was well aware something was going on.

They then showed us the room off the dining room which was especially for Respite. It was near the nurses station which was reassuring. We took mums bags in there and I put them on the bed. She took them off the bed and kicked them with all her might to the other side of the room. And flounced across to dad and told him to get her out of there. Now.

When he just cried she kicked him. Then she kicked the bags. And threw them. Never seen her like it. My gentle mum. She then said in a quiet deadly voice I have never heard before.

“Tom, you take me home now. Tom. Tom. I am telling you to take me home now or I am going to scream and scream.” Dad just cried.

I took her out of the room to the settee. But she kept going back in and saying similar things. No swearing. Very ladylike. But with the deadliest undertone.

Dad came out and shouted, his way of communication, that he was going to have his prostate fixed and she had to be here while he was in hospital. Mum had no clue what he was saying due to her deafness and just thought her was angry with her.

Michelle came and said mum could sit down at the table for lunch, we could go then. I settled her, dad kept crying which really was not helping things. Then I said dad we are going to have to go. We said goodbye and she started to wail. And wail.

Laiju and another nurse came and got mum and walked her away from the table, half dragging her as she cried out to us.

“Do not leave me here. No. No. I am not staying here without my parents. Mummy. Daddy do not leave me here.”

Absolutely heart wrenching to watch her being semi carried around the corner away from us. We exited the secure door and made our way out of the second secure door. Dad crying all the way. Me phoning Tony. By the time we walked out to the front he was there. He had never left us, on this, one of the worst days of my life. Thus far.

 

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Something Needs To Change

On May 9th four years ago we had another Guardianship Tribunal. This one was brought about by an inexperienced supervisor at Calvary Care, and my sister, who both believed my dad when he said I had finished with him.

I had finally moved out a few weeks into the new year after he hit me on the arm with the phone because I was not quick enough to do his bidding. Which was talk to the NSW Trustee and Guardian about his money.

He had been become increasingly aggressive to me on Monday mornings. He expected me to drop everything at 9am and act as his unpaid secretary. As well as his unpaid carer. There would be at least five supposedly urgent phone calls to make for him. Most of the people I rang could not make head nor tale of what he wanted. So he expected me to translate for him.

On this Monday morning I checked into Facebook while I had my morning coffee and found one of my most admired friend advocates had lost her battle with bowel cancer. She was only in her early thirties. A lawyer, a future local politician. A wonderful advocate and friend.

I asked dad for a break so I could grieve for her. Collect my thoughts. Pay my respects. Contact her mother. But he would not have it. He kept coming in, jumping up and down with rage. Then he hit me on the arm, not hard but as if I was a piece of furniture he owned that he could do that to.

I quietly said dad I have just lost a friend. A really good person who was incredibly loved and loving. And was at the start of a remarkable life. I told him that I could not put up with this anymore. I just could not.

I went upstairs and grabbed a few things, I already had some clothing at my son’s place. As I walked through the garage I told dad I would be in touch and would continue to arrange things. He just sat there and looked out to sea.

I found out later he did not visit mum that afternoon in her carehome as planned but went in person to the Trustee who could not really deal with him without an appointment, and an interpreter.

The next day the Calvary Supervisor rang me and was extremely rude and hostile. Said she would not be dealing with me in future and was filing papers for a Public Guardian. I was extremely annoyed with her for accepting a demented violent person’s word for things instead of his previous live in carer. And for her judgemental attitude. She knew nothing of our family background, of the state mum was in before dad’s stroke and indeed of the state of paranoia dad was often in. She simply accepted dad’s word that I had finished with him.

Within some weeks she had resigned and was replaced by an extremely competent supervisor, B. Between us we worked out a very good plan for aides to look after dad each day and for me to visit him during the week. And we arranged that I met him on Mondays in Newcastle when we visited mum together.

Everything ran smoothly and on 9/5/14 we went to Tribunal. My sister requested security guards and for me to be sworn in, because apparently I am such a renowned liar. She screamed over the phone that I had abandoned dad and she wanted me to be banned from anything to do with him. Dad was asked if he he was okay with me being appointed Guardian and he said he had nothing against me. It was not even damning with faint praise!

The Tribunal appointed me Guardian and appointed an accomodation Guardian after B said that dad’s needs could not be met in the house anymore. They were too complex. My sister screamed some more and hung up the phone link. A male Guardian from Gosford phoned in and had a talk with me on the open link. He reassured me it would work well.

As we left B said this shows the Members saw your good character Kate. Its obvious to everyone involved. I thanked her and dad went off with his caregiver, barely looking at me. One of the Tribunal Members came around the tables and said it was so lovely to see me again and to see how well dad was looking. She was the Social Worker Member I had met before.

I left the Travelodge Newcastle and found my way back to Wallsend where I was staying in a tiny box room in my son’s Department of Housing flat in one of the most dangerous blocks of flats in Newcastle. Ice Usage, Violence, Domestic Violence and General Bad Behaviour was an everyday occurrence there.

And yet I felt loved, safer and more at home there than in dad’s million dollar tri level house. I say house as without mum in it it was not a home, had never been a home actually.

I am writing about this today as dad is again asking for a Guardian to be appointed. Even though we had a Tribunal two months ago and nothing was changed. Except I am about $1000 out of pocket for lawyers and specialists fees which the Trustee will not refund me.

I really do not know where to go from here. I feel so overwhelmed when dad is horrid to me. When he is threatening and demanding it brings back my feelings of helplessness as a child and younger adult. I am no victim and do not want to feel like this so something needs to change.

On This Day: A Very Long Time

Four years ago today Angela the Calvary care worker and myself took dad to see a great care hostel near us in Wallsend. It was Jesmond Grove,  a short walk away and  run by Anglicare.

He liked it and did not get upset or anxious but I feared his lack of higher functioning since the stroke would stop him deciding to go in there. It had a personal recommendation from my angel Norma, my parent’s then neighbour.

So it would likely be up to his new guardian. We were having a new Guardianship Tribunal on 9th may. That was two semi formal and stressful legal hearings in less than a month.

Wonder if that is why I was getting nightmares? In both cases two people who had caused me enormous trauma were present and I had not seen either of them for a very long time.

Sharing The Joy

On This Day five years ago we left Sydney and everyone we knew to stay for a little while with my parents while we worked out where we could afford to live.

Five years later and we are a little further north of where they were in Lake Macquarie City. Mum has passed away and dad is in a brilliant care home very near us. Their house is looking great as the new owners are engaged in living in every room. Very different from the reality of Alzheimers where my parent’s lives had shrunk down to a bedroom and a combined kitchen dining area and sitting room, on one level of their three storey home.

My parents had just been released after spending many many weeks in hospital in April 2012, They had been left at Belmont Emergency Department by my sister who had looked after them for the previous seven months or so and had decided that she could no longer cope. This happened without my knowledge until my uncle let me know. My parent’s State Guardians did not even let me know.

We had no idea of their condition as we had spent so much time trying to get help for my then husband since Xmas Eve when he first told us he had wanted to jump off the Gap. We had also been unable to visit them while my sister was there as she was being vicious about my putting in papers for Guardianship for my mother. The hospital social worker in July 2012 had put papers in for my father after his then life threatening stroke and I was advised to do the same by ACAT and others. I was actually talked through the process in 2012 by the ACAT nurse assigned to my parents.

We were already traumatised by events in Sydney, leaving behind both good and bad memories there and to see mum especially like that was, well there are no words. She recognised me though and started crying bless her. Within a few days I had taken them to their many doctors and met their State appointed Guardians. Also many many lovely carers. Karen and Helen especially were brilliant and now are much treasured friends.

We were all taken to Cessnock by my brother to see his family and look at a house we were offered by the Department of Housing there. C had received a text as we travelled north to Swansea about the house actually. It was not suitable as it had too many steps and was in the Ice Capitol of Cessnock but we had a wonderful day catching up with my nephews and nieces.

It also clarified for us that we could not be that far away from my parents. After that I did not have time to dwell on anything. Looking after two demented people in a three storey house was not easy but somehow we did it.

Good indeed can come out of bad. Sometimes it seems that one cannot go on. Life can change in an instant. Putting my red lipstick on, gritting my teeth and just getting on with things when it seems it is impossible is second nature to me. Now however I can smile and enjoy getting on with things.

Life is so calm and peaceful here by the lake. I have reconnected with so many friends and made new ones, deepened existing friendships and now have a wonderful man in my life that I both am in love with and love. He is my best friend, my writing mentor, my life teacher. And such an unexpected gift of pure joy. Life is constantly evolving and I am so thankful for the lessons I learned care of dementia.

To live in the moment. To cherish those I love and to take time to visit them and show them that love in action. To take time to share the joy with others, who knows what it might mean to them? We did not know what was going on all those years we visited my parents but know that they were loved and treasured by so many people up here. I would like to think that I am part of the community, that I can be of use to others. The way strangers were so good to me five years ago.

Guardianship Tribunal Number Five

This week we had to attend the third NCAT Guardianship Tribunal in relation to my father. There had been two others while mum was still alive. Each time the process seems to be more stressful. When I went to the GP today for a prescription my blood pressure was quite high even though I have been on medication since 2000.

The stress in my case is caring for my aged dad, trying to help him with his feelings of abandonment by my siblings and the feelings of powerlessness this whole process brings up. I have tried so hard to help him to feel in control, as much as he can do in a care home, and these legal type proceedings take his power away.

I had thought that this one would be difficult, even consulted a solicitor for advice, but I had no idea how nasty my sister was going to be. She has instigated three of these and two times out of three there was no reason to appoint a Government Guardian. And the other time they appointed me Guardian, with a Co Guardian for accomodation.

Yet she keeps on doing this. We do not pay for these Tribunals, it’s ultimately the government who pays for them and it’s a huge waste of time and money. Not only the Government though, my own time and my money is wasted, the care home’s time is wasted. But most of all the mental energy wasted is considerable.

Over the years my sister has said some awful things about me but this time she exceeded herself. Said I had left my dad without anyone to look out for him at the care home and said the same thing had happened when I stayed with him in his home in 2013/2014. She has not seen him for five years, has no idea of the tough decisions I have had to make to help dad. I actually had to move out of his home as he would never have gone into care if I had stayed. And he needed to be looked after in a care home. He was not safe on the roads and in his garden, around the outside of his house. He was up ladders and on the roof before neighbours could stop him. It was a very hard thing to do, not as hard as putting mum into care, but it was difficult. However I still looked out for him, visited him and supervised Agencies involved in looking after him. That was the time when I was appointed Guardian actually, because it was recognised by the Panel that I do have dad’s best interests at heart and can make decisions in his best interest.

My sister cannot grasp this. We have a history of not getting on as children and it really turned into a toxic mess when my parents both became demented. My sister did not want to do anything useful for dad or even see him yet over the years she has said that I was unfit to make decisions etc. However decision making is a tiny bit of what we do for our elderly parents in care homes.

We talk regularly to staff, doctors, specialists, visit at unexpected times to keep an eye on things. Share morning and afternoon teas with our loved ones so we get to know their fellow residents who are their friends, indeed their family. We buy their clothing, organise storage of it seasonally, arrange internet and computer help. Outings are arranged with Nursing Agencies and regular outings for morning tea and shopping arranged. We do all these things without thought of recompense, from respect or loyalty or because there is simply nobody else to do it.

Though demented people can be difficult and often not understand that they do not have capacity any more, it is vital that they are treated with love and respect and as much as possible arrange things so there is as little disruption to them as possible. It is a constant juggling act, and these added stressors of Guardianship Tribunals do not help.

This panel was excellent. They were merciless in pursuing the reasons why my sister wanted a Guardian appointed. Because by law a Guardian is only appointed if there is a decision needing to be made. And there is not and has not been for the last three Tribunals. This time however they were tough on me too over Extra Services. I had to fight hard for dad to not have services that would make him physically and emotionally worse. I had to sell myself, a thing hard for my generation to do.

After a very firm talk to my sister the Panel withdrew to make their decision. The phones were still open as this was done via phone conference, and my sister accused me of some really horrid stuff. The RN and my son put fingers to their lips telling dad and I not to respond to her. Her mind is so twisted, or her soul. I do feel she acts in an evil way at times, I just cannot fathom why or how anyone could say the things she does about me, and now my son. And how she can talk about our father to others in such a cold callous way. While he sat there crying listening to her.

Saying you are doing this to protect someone is only true when you act out that protection in reality, the often brutal reality of Dementia.

 

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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.

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.