It’s Also About Life

During the last week of March in 2017 dad’s pain was shocking. He had phoned me repeatedly daily, crying. Friends who had demented parents on Facebook were telling me that his reality is different. Others like the lovely Janice knew my dad through my posts and just knew he was in agony. I had told the staff many many times I felt he was in pain from his metastatic cancer. So had the Hammond Care Team (DBMAS) and Morag the team leader who came out to see him after I spoke to them in despair about his behaviours the previous year.

So fortunately did the new NUM. He phoned to apologise after we were told by an RN that dad had not got out of bed after crying the day before. He was crying and crying in pain. My son and I were feeling angry, upset, horrified and powerless. So we got in a taxi and went straight to dad. When we got there he was approaching the dining room from his bedroom. It was a hot day and he had on cord pants, two woollen sweaters and one of his lovely Irish tweed jackets. On his head he had a thick woollen beanie I had knitted him. He was totally out of it, as white as a sheet and was unaware of his surroundings.

The ladies were very worried, especially Betty the non verbal lady, who always sat closest to his room, as he always stopped and asked her if she was okay, did she need anything? The other lady who was really upset was the food prep lady. They all loved dad and knew he never ever stayed in bed unless he was in pain. It is totally against his Irish work ethos to laze around anywhere in the daytime. Indeed when I was younger my mum would save a lot of her housework for the weekends so as not to feel lazy around him!

It took about forty minutes to get dad zoned back into why we were there. My son went down to Kmart to get him some computer stuff and I stayed and soothed dad until he was back to a semblance of normality. He said he had not wanted to worry us.

We were so exhausted after settling dad and from the emotional impact of seeing him so weak that we also got a taxi home. Over $120 in taxis that day but it could not be helped. When safely home with a cup of tea I emailed the NUM and we chatted the next day. He apologised that dad’s pain had not been correctly charted over the weekend and he said it’s not good enough. He contacted the GP who was against Mater Palliative Care being called but the NUM insisted and said I had been after that, as his Person Responsible, for some time.

A week or so later the Team from Mater had been out, dad had a Morphine Patch on for pain and Respiradone for the anxiety and fear that was keeping him up at night. Dad is not silly, he knows. And was frightened of the pain meaning he was going to die soon. Whereas the Palliative Care Team is also about life, and living it well until the end. It has been a year this week since dad started the patches and he is a different man. He now needs it boosting with Panadol, which I had to suggest and insist upon, but his endurance is incredible and a testament to his strength of character.

I have always been proud of so very many aspects of dad’s life, and maybe the way he is approaching his death may yet be the thing I will be most proud of.

 

 

 

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The Face Of Grief

My mum was not able to have a funeral. For some strange reason mum and dad were allowed to sign forms with P Funerals even though mum was clearly in mid stage Alzheimer’s and Dad had brain damage from a stroke. They both signed for cremation only with the notice of their deaths to be in The Herald the Saturday after they passed. They were both under the Trustee and Guardian NSW at the time and any decisions they made about spending money etc would have been fairly suspect.

The day mum died my son and I were at dad’s house comforting him and he came out with two suits to choose from to wear to mum’s funeral. He clearly expected a funeral. He is Irish Catholic and it is Canon that ashes are interred etc. I was expecting a funeral, I was so shocked and went slightly crazy with grief when I found out we would not be able to give people who loved her a chance to say goodbye.

After a short period of time I contacted the care home and asked them if we could have a Service Of Thanksgiving for mum’s life. The care home had a lovely little chapel which was perfect for the amount of people who would be there. I phoned P Funerals and they said they could arrange everything for us and NSW Trustee and Guardian said to send the accounts to them.

We were advised to not advertise the service so we asked relatives who were unfortunately unable to come. Dad was there in his green tweed suit, my son and his girlfriend, the wonderful neighbours Norma and Norm came and Michelle the NUM and Greg, the lovely AIN who had found mum that morning, when she had passed in her sleep.

At the last moment we were unable to get a Catholic Priest as there was a Conference in Newcastle and there was not a spare priest to be had! We ended up with a Funeral Celebrant. I actually overcame my terror of public speaking and told them I hoped the wonderful poem Two Mothers Remembered by Joann Snow Duncanson that I read would help comfort them.

I thanked Greg for being so wonderful to mum and being so kind. Mum actually thought he was a policeman. Because of the keys he had on his belt, and his uniform. She once said that he was such a clever policeman, that he even showered her and gave her cups of coffee! She was amazed at his versatility. I also thanked Michelle for everything, she had welcomed mum to Respite Care and then welcomed her to the care home to live a month later and then had the awful task of informing me that my beloved mum had passed. I told them how I loved to see the person mum had become. Totally full of fun and laughter and feistiness.

My son, mum’s much loved first grandchild read out Daffodils by Wordsworth and we had some of mum’s favourite songs on a CD player. Mum had a favourite saying since she had mid stage Alzheimer’s. She would say well then they will sure see you coming whenever I wore bright coloured clothing and it never failed to make me laugh with delight. So I wore a scarlet knitted cardigan coat to the service. However, there was no laughter for me that day.

Later on I was shocked to see my face in photos, it was weeks and weeks since she had died, but it showed on my face, the sheer depth of my grief. Still. But perhaps the grief had deepened because there was no way to say goodbye to her. Nowhere to go to pay my respects. To show my deepest love and devotion. And there still is nowhere to go, but over three years the grief has abated and I can even forget for a while that her ashes are in my food cupboard.

 

 

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Ever Spreading Tendril

I had an appointment today with my dentist. As I was almost forty minutes early due to the strange timetables of Newcastle buses I popped into the coffee shop that I have had my eye on for a while.

Big mistake. Though the lovely Lisa the proprietor was well intentioned she is basically deluded. Anyone who thinks they can repair mesh damage, namely a drop foot, with antioxidants is totally out of their mind. And dangerous to the unknowing, the uninformed, the people finding their lives unendurable.

So good to know that her 80 year old husband who is twice her age is as fit as her. I mean would he dare be otherwise? I tried to explain it was not age related or arthritis related. And that my medications are a necessity not a foolish luxury like the antioxidants. But I know a lost cause when I see one.

I managed to get away and limped, trying not to dammit, to my dentist. Where I had a longish wait. Somehow, and am incredulous as to how this keeps happening, one of the receptionists told me she has a TVT (trans vaginal sling) and was very interested to hear how I became meshed up.

I was able to give her Professor Vancaillie’s name, explain everything to her and encourage her to get a 3D Trans Vaginal Ultrasound. As only around 20% of cases cause issues it is good to know if the mesh is still in position, and to get a referral to discuss options with a Urogynaecologist if needed.

She was very open, informed and intelligent. Asked me how my bladder surgery was done using my own tissue and also how the rectoceles were repaired also using my own tissue. So perhaps the situation with the unknowingly ignorant Lisa was meant to be? Or perhaps the Sisterhood is indeed an Entity, with many tendrils, spreading out around the world to share, to inform and to protect women from being mutilated, butchered and meshed up. I thank God, The Universe and The Sisterhood and am indeed humbled to be part of this ever twining tendril spreading around the world to release and protect fellow sisters from ignorance and cruelty.

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Fright

On This Day five years ago I had been up until late packing ready for our move away from Sydney. I had been packing British Crime DVDs which must have taken some time as I have so many. I started fasting at 2 am for a blood test and went to bed quite late so as to keep my son company, and also to see if I could sleep through so much of the morning that had been spent retching lately.

Once I awoke I was able to get dressed, though still retching, and make my way through the back alleys behind the shops in Randwick to Dr M who had been our family doctor since 2001. I was there right on opening time however there were three patients ahead of me. Typical! Usually this worked really well for me rather than getting tests done first thing in the morning. I chose a magazine and settled in to read after chatting with Eleni the receptionist who had become my lovely friend over the years.

Something made me look up and I got a literal shock as my ex was at the door about to come in. Our eyes locked and I realised what my son meant about ‘the look’ which terrified him. He stood there for some time with the most awful look on his face then he went away.

I was so frightened I started crying. In front of the then full room of female patients. Eleni came over and asked me what was the matter and I told her. She said she would ring me in future if he was there but it would not help if I was already here.

I went into the doctor and he easily took the blood and then I told him what had just happened. And that we had only been to court the day before and the AVO’s had been issued. He sat back and said this is a problem Kate. He said D cannot take change. He will not go to another doctor. That C and I would have to find another GP until we moved north or risk this happening again.

He had never seen me rattled before, even when I popped in to see him after I saw Professor Newstead the bowel surgeon to tell him I was having a Colostomy. Or when my surgery in 2000 went so badly wrong. He loved my pick myself up, dust myself off and get going attitude to life, so this was very hard for him too.

So that was another thing taken from us by this person we had supported for so long. My son’s and my own medical needs were very complex and required authorities for medications most GPs were not happy to write scripts for.

I left the surgery and started walking up High Street towards Brumby’s Bakery to get C some finger buns. As I approached the corner I saw my ex stand up and walk towards me from the direction of High Cross Park. He was sticking to the AVO literally by keeping 500 metres away from me. However I started having palpitations and became very panicky. No stopping in coffee shops for a break any more. I bought the finger buns and walked swiftly home.

The blood tests showed the palpitations I had thought were stress related was really my thyroid being over medicated and that I likely had diabetes. A great time to start with a new GP.

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No Contest

On This Day five years ago my son and I were in court as Apprehended Violence Orders were taken out against his dad/my husband of 29 years.

It was a sickening experience for us. C was so upset he had to go to Emergency the day before as he was feeling overwhelmed. Luckily a young Psychiatrist saw him and understood what was happening.

He advised us both to emerse ourselves in something that night, before court. So we did. Watching the latest Star Trek film on DVD, snuggled under afghans on his leather chairs, sitting beside each other.

The next morning I had to get up well before the court appointed time as I was still retching until three every day. It took me ages to swallow my medications.

I was immediately shown to the Women Only room however there was nowhere for male victims to go so my poor son had to stand and watch as his father walked by him and up the stairs to the courtroom. We were beyond grateful that his friend G came to stand with him and support him. Especially since his girlfriend broke up with him that day. Or her parents did, she just followed blindly, as always. When he needed her she was never there for him.

My then husband pled No Contest though he had wanted to deny the charges and fight the AVO. He was advised by his lawyer not to fight it. And that day ended our lives really as we knew them to be. It had always been the three of us. Though since his breakdown seven years before it was really unbalanced with us being more in the carer role to him.

Regardless of the hurt and fear he had caused us we still hoped that he would become well again one day. After court we walked up to Bondi Junction to the wonderful “Curious Cafe” and talked with G for hours, sitting in the sun, watching life go on for everyone else.

 

 

 

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Moving On

Late July 2014 my mum died and a few weeks later I was royally screwed in my financial settlement prior to the divorce later in November. It was an incredibly stressful time plus I was battling a then unknown massive (see the size of my tummy) parastomal hernia and the pain that went with that. Dad had gone into the care home where mum had lived in the last year of her life. Everyone was moving on and I had to try move on as well.

But it’s not that easy, one cannot just click one’s fingers and turn grief off. It would hit me out of nowhere. Sitting at the bus stop waiting for the bus to the shops I would realise there were tears on my face. I would wake up every morning crying, no dream, just tears of deepest despair. Because I had wanted to share so much with mum. She was so much fun and a joy to be with since moving into care. Her anxiety and fear had simply gone as the structured days alternately stimulated her and then soothed her.

There never seems to be enough time to do everything we want to do in life and I realised that I had to try to do something to help us all move on. Then I could concentrate on the two men who needed me so much. So I asked my son and his girlfriend if they would like a trip to New Zealand, to thank them for all they had done. And to ensure that they saw his girlfriend’s Grandmother while she was still well.

 

 

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Fifteen Minutes

One of the most important things to do as a carer is to take time out for yourself. Whether it is to go out to a coffee shop or creating your own little area on the verandah or in the sitting room or in your bedroom.

When living with mum and dad I liked to sit on one of their patios and look out to sea. The incredible beauty of Lake Macquarie went a long way to healing me of the trauma of my Silver Divorce. I loved seeing the way my parents dragged lightweight chairs around to catch the early morning sun and also to get the best views.

I liked to get a tray and some pretty china, in this case Magnolia, a set by Ashdene. Tea with a few diabetic friendly biscuits that can take up to fifteen minutes to nibble was heaven. No tech with it at that time, just blissful birdsong.

 

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