I Never Want To Feel Like This Again

Today was the fourth anniversary of my mum’s death. It is always a very hard day for me. I was so unprepared for her death. So unprepared for her new life. I needed more time. And today time is all I had. And memories. And photos. And more time. Sharing photos and those memories to Facebook. My friends doing their best from a distance to make me feel better. I have the best friends. The best network. The absolute best son in the world. And a wonderful partner.

However my partner was unable to be with me today, even for a short time, as he had a previous commitment to a weekend birthday bash. A sleepover one filled with all sorts of people, interesting and average and quite a mix of ages. And some of his family.

Usually we communicate throughout the day fairly regularly. And we say good morning and goodnight by telephone, a prolonged goodnight, over three hours last Friday night. Perhaps I should be happy with the time we do have together, such as last weekend where we had a fabulous, romantic weekend away together.

But I am cursed with wanting more. I did not have enough time with my mum, I am conscious of time and how things can change in an instant. I want more. I want to meet all his kids, his grandkids, his friends. Have heard so much of them but they seem to be denied to me, for now anyway.

Earlier today I was interviewed by ABC Newcastle about my Hernia Mesh. I have been in hospital again this week and it was stressed to me that I should really come in with all my bowel obstructions. I hate it though as they seriously cannot get my veins and then there is the dreaded NG tube. So I treat myself at home, always ready to go to hospital quickly if the pain worsens or if I start vomiting. As it did in 2015. It is serious and not to be messed with.

The reporter was fantastic. I have met her before. We did this over the phone as she wants to get this report to go National ASAP. We had a good talk then she did the thing where she said she wanted to know how it really affected my life. So I told her. She is excellent in getting to the absolute heart of the subject.

And it is one of the reasons why this thing about time is so important to me. To grab life now, because I do not know if this will kill me one day. I really don’t. And before then I want to see all my friends and meet my lover’s family. And not feel like the other woman. Because that is how I have felt all weekend. As if I am someone who cannot meet most of  his family. Must not let his family know we are together. That his obligation to this female friend exceeds his obligation to me.

It might seem stupid to him but it is how I feel, and how most women in my position would feel I believe. I have given myself heart and soul to this man, and maybe that was wrong. Anyone who cannot be there or even find the time on such a day as this to let me know he is thinking of me, of my son, may not be worth my love. I have a lot of thinking to do and we need to talk. I never want to feel like this again. I need that to be very clear.

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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.

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.

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.

Dirty Sweaty and Dishevelled

On This Day five years ago my then estranged husband came with a police escort to collect his belongings. I was quite apprehensive and my son stayed in his room so as not to see him.

He was dirty and sweaty and dishevelled looking which took me back thirty years to the first years of our marriage when he would have periods being a bit odd and not looking after his personal cleanliness.

When he came through the door he would not make eye contact. He was flustered and uneasy, possibly because the police escort were not buying his little boy lost act that he used to manipulate people. That can be fun in a young boy but not in a sixty year old man. I heard him asking them for a lift in the police car as he had not realised how much clothing he had. ( Bought by me I might add) They did not take too kindly to that, told him to take it all downstairs and he could call a taxi.

He made no arrangements to have his thirty years of gifts, furniture, art and collectibles packed up and stored. The real estate agents said if they were not picked up they would organise a house clearance and charge us for it.

Was very relieved when it was over and he had gone. I did not know this man anymore, and wondered if I ever had. I was then able to think about really gutting the place, taking as much as possible to charity shops before we left so they could help others by making some money out of our things.