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.

 

 

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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.

 

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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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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