Where I Choose To Be

Yesterday was my late mum’s birthday. But that was not why it was such a difficult day. In the morning I rang my dad in the aged care home. He has dementia, stroke damage and stage four Prostate Cancer and he was very worked up and totally out of it with agitation. He told me he had manhandled and literally thrown a lady out of his room and that her friends had come to help her. Dad had swung at a man who used to be a fighter, who said he ducked. And dad told me he was going to get a man, later on. He has never been fond of people he finds stupid and these people are demented, bless them.

My son and I then set out after lunch for my appointment with Dr Russo of The Hunter Pain Clinic in Broadmeadow. It’s a level one pain service where medications and injections and ablations into and of nerves occur, unlike at John Hunter Pain Management. I went six months ago, found great success with my SFN and other neuropathic pain due to past surgeries and mesh. It is a lovely bus trip by the lake to Cardiff and then a train to Broadmeadow. Unfortunately it’s a long walk for me from the station, I know now to get a taxi from there. Silly of me not to, I was overconfident.

At some stage of the day the AINs told dad his blood pressure was up, probably to try to get him to stop fixating on the men he particularly hates. So he started phoning and when he could not get me he left messages. Three before I wised up and stopped taking the voicemails. Each was worse with him crying, wanting to go to hospital and beside himself thinking he was going to die.

Meantime my son and I waited over an hour for Dr Russo, who was brilliant as always. He said I needed to increase the Lyrica in my Neuropathy cocktail by 75mg. After that nerve ablation of the Femorogenital Nerve and the Illinguinal Nerve on the left side is all that is left to do. He also wrote that I could have a sustained release painkiller, Palexia. All I use at the moment is Panadol Osteo.

The trip home was a long one. To avoid the walk to the station we caught two buses, one to Glendale which was forty minutes and then a bus home which was around twenty. I stopped being a nasty snarly bitch to my poor ever suffering son once off my feet and on the bus and dropped into a ten minute retrospection ending in quite the insight. I have had moments of clarity before but never quite like this.

I was wondering if it was worth it. Really. To have Small Fibre Neuropathy pain so badly that I had needed a walking aid to get around. The pain so unspeakable I found it hard to describe it. And to lose that pain totally for four months only to have it start to return? With no real hope of it ever going or being controlled. More so with the unbelievable mesh pain beside my stoma. Would I have done it if I had known? Would I not have been better to not have that wonderful break, only to have to learn to deal with the agony again?

And yet, if I had not tried the cocktail, I would never have got off the walker, might even have been encouraged into a wheelchair by now. I would not have had the courage to meet up with my man of many voices, not in an intimate way. Would not have started any relationship at all. Talking to Dr Russo I realised how much had changed since I saw him in November. For the good. Life is full of joy for me, despite the pain. Or in part because of it I truly appreciate life and the beauty in the world.

So yes I would have tried the drugs, I would have knowingly tried them even if they had told me they would not continue to work much beyond the six months. Because where hope is is where I want to be. Where possibility is is also where I am meant to be. Where determination is is where I choose to be.

But for dad, my quandary is very different, to hear him at 4.59 this morning. Crying. Because he “does not know what is happening.” The catch cry, especially of the Vascularly demented. What is the point in prolonging his misery? His fear? His degradation? Should I have ever let the specialist put him on the Zoladex which is stopping the Testosterone which is fuelling the cancer? It will wear off by the end of this year anyway but it’s month upon month of agonising fear for my dad, a once proud, strong man. Can I in good conscience ask for it to be stopped? And let the disease take its course?

In other countries he might have been able to choose his death. But dad thought he was immortal and never prepared for old age. Now I am trying to look after us both. Making tough decisions for both of us. Mine is just pain, it will not kill me though the increase in Lyrica will likely affect my memory. But only while I take it. Whereas dad is going to die. A long, drawn out protracted death whereby he slowly withers away. Even now he is dehydrated. He could choose to stop eating at any time. It happens. And I will be here witnessing it, but thankful my mum did not have to. That she was taken before that. She always looked after dad, he was her first thought in the morning. Her duty was to care for him. Her duty born of love. Mine is a different love, but mum knew I would look after him. It is who I am. And who I am is very much someone who questions suffering. Suffering, the kind that does not enrich life, only demeans and terrifies our elderly. Our loved ones with dementia.




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.

A Few Brief Years

It is my brother’s birthday today. We are deeply estranged, his decision, not mine. I cannot help but think of him on his birthday. I helped bring him up. His many trips to the beach and Wyong Show were spent with me. I knitted all the latest fashions for him including the Starsky jacket in the seventies. I miss him, and the children, being an aunt, loving those children and wanting the best for them. We do have happy memories of a few brief years after dad’s stroke where we got along. Those are all I have now.

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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Inaugural Canon And Randwick Petersham Cricket Photo Competition

On This Day five years ago my son was presented with his prize for winning First Prize in a competition sponsored by Canon, and presented to him at Coogee Oval. He had taken several photos and the one the judge chose was the most art like. Mike Whitney loved it. He was charming as always, made my son so comfortable. Not easy as his father had reluctantly come along to the presentation.

He had been home over a week after his hospitalisation for attempting suicide at The Gap, but was being increasingly vicious with us and the trip from Randwick to Coogee on the bus was a nightmare. As was the breakfast treat at Macdonalds. He would not sit near us on the bus or at Maccas. He barely said a word to us.

When we got down to the oval I chatted to Mike Whitney whom I had met again recently in Royal Randwick Shopping Centre when he was looking for the doctor’s surgery with his elderly mum. That had been the first time I had ever seen Mike flustered so I had asked  him at the lift, if he would like me to take his mother and himself down to the surgery.  He breathed a deep sigh of relief and said yes please.

The other time we met him as a family was in Myer Men’s department in Westfield Bondi Junction a few years prior to that. He was charming then too. This time was no different and he was so delighted to meet my son, the winner of the competition. Said he had never seen a photo like it before.

The presentation went well but was marred my then husband’s disdain for the whole thing. He refused to talk, sat well away from us and sneered at my conversation with Mike. He was horrid and it was one of the few public displays, apart from Christmas Eve, where he treated us in front of other people the way he treated us at home.

Later on my son and I met his ex for morning tea, very glad to stay out of our flat. We would not let his father’s behaviour ruin the wonderful day. My son had turned to photography when his pain interfered with his writing, which is his first love. I admire and deeply respect the way he has adapted all his life to his health circumstances, though the whole thing with his father had really thrown him, hurt him dreadfully.


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Pre Admission Of Mum To Permanent Care

My brother was working away God knows where and my sister was, is, and always shall be a complete witch and had disappeared. So it was up to me to get everything ready for Mum’s admission to Permanent Secure Care. All within two weeks in late June 2013.

Me, the one so traumatised that I could not even fill in paperwork to arrange my own divorce or financial settlement!  Had to do realms of paperwork, with the my nerve damage in my hands!

*So I had to go for a long appointment the result of which is I basically read and signed masses of papers which literally signed the rest of my mother’s life away. The life that until dad’s stroke I had no say in whatsoever. It was such a huge shock to the system to be the one in charge. While making sure one’s parent’s thought they were of course. It was and still is like walking a tight rope.

*Tried to explain legalities and costs to dad. That did not go as planned.

*Organised transfer of her file her file from her GP to the facility.

*Same with her Webster pack, that had to be cancelled and all meds bagged up for the care home.

*Packed most of her clothes without mum suspecting anything. Had to say they were being washed, then took them with me to the facility when I did paperwork and while there also organised labelling of the clothes.

*Bought her lots of new clothes and underwear and nighties.

All the above somehow accomplished without a car or taxis. I just slogged it out over the hills to the bus stop and caught various buses. Had lots of great coffees at various places along the way. Carers need to take time out for themselves even when doing chores such as these! Could not have done it without my son and his friend gen, eternal gratitude and love to them both.