Common Circus Belmont

Yesterday I had a flu shot administered by a medical student under the expert instructions of my GP. We all survived, I still have my arm, though it is a tad sore at the site which is usual.

The student was male which was unusual as we get a lot of female med students and he did an excellent job for a first injection!

I felt in need of a coffee as I always do if I am in the vicinity of Common Circus, the wonderful homewares and coffee shop opposite Belmont Lake.

I have been coming here since I moved into my home in 2015 and really love sitting at the large communal monk’s style table. I blog my memoirs, surreptitiously people and baby watch and chat to people from all walks of life as well as these days assess who is a tourist.

I remember the first time in 2016 when I was asked if I was a local! By a tourist. It was incredible and I felt really proud of my beautiful region. Then I chatted about Words With Friends and other things and yesterday I observed a lovely interaction with some young mums at the table.

One mum had a newborn in a sling which the other mum nursed for her. Her little toddler was hidden by the plants in the middle of the table so I could not see what he was doing. He was very quiet.

I asked if it was okay to take photos for my blog. Assured them it was anonymous and covered women’s health etc and coffee shop reviews! They liked that I think though the gorgeous young mum was concerned she looked awful as was sleep deprived and had no make up on.

You can judge for yourself from the photos below. There were lots of people coming and going. Business types in suits getting their take away coffees. Older people reading newspapers while they savoured theirs. And then the younger ones perched on the stools looking towards the lake.

There is a lovely outdoor area with a communal table and the staff is always perky. And not as a result of the coffee. They are naturally inclined that way! And. They know the names of most of their regulars!

I highly recommend this place, not least for the service they provide but for the way they make use of recycled paper boxes and napkins and cups instead of plates and cups and saucers. Their coffee and food is unparalleled too.

The decor is gorgeous with patchwork panelling and colourful coffee machines. Currently pink. Used to be aqua. I prefer the aqua but that is just my taste and the pink does not nauseate me as it may some people I know. Think fifties kitchens. Pretty.

Five star review. Excellent and has remained so, even improved if that is possible.

Advertisements

I Got That From Her

On This Day five years ago G and my son and I had a great shop at our local Vinnies in Swansea. We stocked up on lots of clothes for Mum as we knew she would need a lot for when she went to Respite in the Care Home. She needed warm clothing, nightgowns and dressing gowns and shoes and slippers.

She loved cardigans, indeed one day a gorgeous softest silver grey boucle cardigan arrived for me from eBay UK and when mum saw it she beamed cheekily and grabbed it and said its mine. Of course I gave it to her instantly. As she had with me as an adult. She would literally give me the clothing off her back. Come to think of it I got that from her as I do that too!!

Shopping was pretty exhausting as we trotted off to Coles to stock up on food for the folks. Mum had eaten us all out of house and home again! When I got back I left the youngsters to unpack and escaped to my little retreat way downstairs where I read and knitted each afternoon after getting everything for my parents organised in the morning. I loved it down there though it was starting to get very nippy.

We brightened and personalised the empty space by rearranging the furniture and adding a cube bookcase, a big faux leather storage ottoman and some affirmation plaques. Very much needed after what we had been through for the last year. G has them now in her flat, I no longer need them as I am on the other side of everything now.

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.

 

 

Resigned, Not Panicked

Today I went to the local Dental Clinic to have my mouth assessed for dentures. It is a difficult place for me to get to. The local bus that connects has a forty minute wait so I walked up to the shops via Belmont Citi Centre where I had a very nice coffee. Then I popped into two charity shops, scoring three gorgeous jackets for myself and a gorgeous dress too. I made it to the bus stop as the bus pulled up and it was a pleasant trip around the lake to the Dental Clinic.

However getting off the bus was problematic as it was not accessible so did not have a ramp and the driver pulled up right on the road. I tried about three times to get off then climbed down backwards, hoping my good leg would reach the higher curb.

Then began the walk down the really uneven unkempt sidewalk to the Clinic. I asked for a glass of water as soon as I got there as was feeling a bit rattled and the lovely Sarah got me one straightaway.

Then the male dental assistant…a first for me… called me in. I was sitting sipping water and quite well dressed and well presented if I do say so myself, wearing an art deco styled tunic in greens with black leggings and a bottle green tshirt under the tunic. Black sandals and an off white lace cardi coat completed the outfit. So it is always a surprise for medical staff and others when they see me get up and attempt to walk.

This lovely male dental assistant took my handbag and everything off me to assist me immediately he saw me hobbling. He commented that was some incapacity and was it recent. So I explained the mesh implant and how it had entrapped my nerves causing Drop Foot and other issues. Angharad the dentist and the lovely chap were pretty stunned.

My mouth is looking pretty good apparently. Apart from a chunk of bone Angharad picked out after numbing that side of my face with gel. She then arranged for me to see a Dental Technician to have two dentures fitted, one top and one bottom. And also a referall to Sydney Dental Hospital for implants.

I then started to make my way back to the bus stop to return home and found I was having a lot of trouble moving my left leg. It is the one with the drop foot but this was more the whole leg would not work which is the Cervical Stenosis at its worst. Lesson learned, too many dental appointments not good for me and I need to get a taxi or a lift back.

For some reason it reminded me of when my dad and I were in Swansea after seeing his GP and having a coffee in Cozzies. We waited outside Cozzies for over two hours for a taxi. I called and called and not one of them would come down from Belmont to Swansea. I was getting frantic as I could not leave dad alone as he had no road sense due to dementia but I could feel my Colostomy Bag filling up. I was really horrified when it burst open. I rang one final time and let Newcastle Taxis have it, telling them I had a demented man sitting waiting beside me near the Pacific Highway and I had just burst my Colostomy Bag.

Of course dad was horrified by my bag bursting. He said I could go find a toilet but I could not leave him and I could not take him into the disabled toilets nearby as he would be even more horrified if he saw my stoma and what I had to do to clean up the mess.

Luckily a lovely taxi driver who works out of Belmont took pity on me then and was there very quickly and drove us the short distance to Cave’s Beach. He ignored the awful smell and apologised and gave us his card so we could call him directly in future.

Today I waited outside Belmont Citi Centre and again there were no taxis as it was changeover time and the few cabs there were usually picked up schoolchildren from various places. I decided to try to walk home but needed to rest. The looks from people had been horrified as they saw me dragging myself across the carpark.

So as I sat I reflected on the fact that this time I was resigned, not panicked as I had been five years ago about getting home. This time I did not have a demented dad relying on me for everything and who was unable to get the bus or walk up the two hills.

This time I only had myself to deal with. However my precious son came and met me at the Centre. Looking very concerned at my face. He does not have to look at my legs or tummy, he can read everything on my face. I so very much wish he did not know how to. But he has been exposed to so much pain and suffering since we have been up here that he just gets it. And how proud I am of him, the way he went and bought me an iced coffee to sip while he popped to the post office. Knowing that when he came back we would be able to get home without a taxi as there are lots of benches on the way home to rest upon. Which is what we did, he had brought my walking stick with him and I walked on the grass verge and it was a lot easier than the pavement.

Am resting now, thankful for the lesson my body gave me. And eternally grateful to have such a wonderful son.

Mother’s Day 2018

Wishing mum’s everywhere a truly wonderful day, while thinking of the people who no longer have their mothers. There is also the unspeakable grief of the mother’s who have lost their children. I know a few and my heart goes out to them. Usually I find they are the first to wish me a Happy Mother’s Day.

This is the first Mother’s Day since 2014 that I did not cry when I awoke. My mum passed away mid that year. I never thought I would be able to get over the unrelenting grief but life is full of possibilities. It goes on regardless of our feelings or of what is happening in our lives.

I had one Mother’s Day with mum in her large home, just before she went into care and one the next year, where we spoiled her rotten before celebrating our own little family. I bought mum a beautiful aqua boiled wool jacket which she wore for one outing with me after that. She died suddenly a few weeks later.

I have added some photos of my mum throughout her life. She was full of fun and cheeky at the beginning and end of her life and I was truly blessed to share those years with her.

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.