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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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.

There Goes My Open Mouthed Smile

Yesterday I had a tooth extracted. It had broken within weeks of moving up here and staying to look after my mum and dad five years ago. I had some kind of a reconstruction on that molar a few years before that but they told me it might not last. I was eating one of my son’s amazing chicken burgers when I got an excruciating pain in my top gum. I semi shrieked, luckily mum and dad had gone to bed already, or they would have called an ambulance. They knew I did not show pain unless something was wrong and an ambulance was their lifeline.

This was quick though, over with as long as I ate on the left side only. A few days later I got so fed up with the reconstruction flapping around and jolting me with pain when I forgot and ate on that side that I grabbed ahold of it and twisted. It really really hurt but I pulled it out. It seemed like half a tooth. No decay at all and I was left with a complete tooth on one side and nothing on the inside, with the gum sealed over it.

I could not afford either the time or the money that year to get my tooth fixed. My parents were a 24 hours a day, 7 days a week job then. And I was existing on a pension after my then husband locked our bank accounts down after I locked him out of our flat in Sydney due to his bizarre behaviours. Then there was the physical and mental exhaustion at the end of the day and also nobody to look after my parents while I went to the dentist or recovered from an extraction.

I ignored a lot of things that year including diabetes, however I would do it again in a second. My son was ill as well and developed Pericarditis, there was no time for me to be ill. One of us had to present a front to mum and dad that they were calm and in control of everything that could hurt or bother them. And that is what I did, though I did get on top of the diabetes later that year!

So yesterday I had my teeth cleaned, a molar filled and then a very difficult extraction. The tooth kept breaking and shooting off bits of tooth at high speed. My lovely dentist had to push my head to the left a lot to get at the tooth. Unfortunately I have Foraminal Cervical Stenosis on the left side. Quite severe too! When he finally got it out I was a bit shaky in the arms and my feet kept catching as I walked home. I sat down for a while on the way home and gradually covered the distance. Not sure how. Maybe the same way I coped with mum and dad in 2013. By simply putting one foot in front of the other and working towards the goal. In my case getting home and laying down. Chatting on Facebook to dear friends and in real life to my son C and my friend J. The two most important men in my life. And the most caring, considerate men that anyone could have the privilege of knowing. I have been rewarded over and over since moving up here by meeting wonderful people, deepening existing relationships and reconnecting with people I had lost contact with. All this aided by technology. Facebook, Messenger, Words With Friends and Texting. I could not have accomplished or indeed survived 2013 without these things.

I had quite a bad time with bleeding afterwards, it did not stop for some hours until J suggested small ice cubes. I then got to have a look at my mouth and face. Swollen and distorted from the hard physical work of removing something that just did not want to come out! And there goes my open mouthed smile for a while too! After next week I will have an up to date mouth, until I can afford implants and teeth whitening anyway. And then it is on to the long list of health things to address, and get on top of. Not just because I have people relying on me, but because I have people who love me, and I owe it to them to look after myself. And I owe it to myself too, I deserve to be as well as I can possibly be. We all do.

 

Easter

My son and his family dropped me at dad’s care home yesterday. I try to arrive around morning or afternoon tea time so I can chat to the staff as well. Calvary have wonderful staff, kind, caring and very professional.

I walked through the dining room to ask if dad had been in yet. As he had not I started down the long corridor to his room, meeting him on the way. His beaming face said it all.

We started back to the dining room, chatting all the way. Dad was checking my legs out as I usually wear maxis or leggings. He has not seen them in years! He seemed very proud as he kept pointing out to people I did not know that I was hs daughter.

I planted the Lindt chocolate bunny on his part of the table  and we shared an egg he had been given with our coffees.

Once  back in his room we had a good look through the photos I had scanned up with Photomyne and he explained to me the settings of the photos and who the people were in them. I will be writing dad’s work memoir if there is enough time before Stage four Prostate cancer claims him. I need to get names and dates from him while I can.

My family arrived and we went outside into the garden and took some photos. The cover photo was taken by my son. He is a professional however I cropped his watermark to protect dad’s identity and for his privacy.

The grounds are magnificent. Am thinking an autumn picnic would be fabulous there. Especially with the golf putting areas. Such a lot of fun for dad.

The previous year 2017 we took a chocolate mud cake and made an Easter cake with dad. He was bemused but felt very special. He had been having a terrible week that week, we really wanted to distract and spoil him. And the one with dad looking like all his Easter’s had come at once was Easter 2016. Michelle the singer playing Easter Bunny that year!

I hope everyone had a wonderful Easter. That your loved one with dementia felt the love and hope of the season.

 

Nothing Came Up

On This Day four years ago I dressed myself appropriately for an appointment with Anglicare Jesmond Grove. It was for a possible bed for my dad who was a danger to himself at home.

I walked up the back streets to the care home. It was only about ten minutes walk from our flat at the time. It was very nicely landscaped and looked to be well run. I also was fortunate enough to have a personal recommendation from our lovely neighbour Norma whose mother had lived there for many years. I was inspecting the secure dementia area.

I was quite pleased with it but unfortunately nothing came up for dad.  And we could not wait. He was unsafe, carrying bottles of gas bigger than himself. Getting up onto the roof. All with Hemiplegia. Unbelievable. The neighbours were at their wits ends!

So the search was on for another home suitable for dad.

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