Settling in, sorting out

My life is different now. I am finding a rhythm to my days, which include visiting Terry in his assisted living place.

It’s a strange experience though. For a large chunk of time I am a single person, and yet I am still one half of a couple. An ‘Illness Separated Couple’ is our official description. So I am still mindful of Terry in what I do, even though we will never go back to the life we had.

I am gradually clearing away things, sorting out. And working out what I am ready to sort, including sorting out my internal life. The rug for example.

My house (interesting that I write my, not our) is a long one, hallway down the side and rooms lead off that. Then the back area opens out to an open plan kitchen, dining and seating area. This part has never had a proper room name (lounge room/sitting room etc), I always just think of it as The Back Area or Down the Back. It has large windows that look out to the garden.

When we were a proper couple our comfy arm chairs would be next to each other, backs to the garden, looking to the kitchen part. We would sit side by side, drinking endless cups of tea, chatting, reading, arguing. Or I would sit in the comfy red leather chair and watch Terry do the dishes ~ The Washing Up Fairy we called him.

This seating area was marked out by a green and reddish brown rug. It was a lovely thing, wool, made in India and suited the decor perfectly. Then we discovered the moths. Under the comfy red chair, slowly eating the wool rug. Even though we tried various things they gradually migrated from under the comfy red chair to other parts of the rug. I discovered that migration when I vacuumed.

Things got harder with Terry’s health and it was party time for the moths.

Now it was time for the rug, and the moths, to go. So I rolled up the moth-eaten rug, dragged it outside and dumped it for the hard rubbish collection. (The hard rubbish collection is another thing that will happen when the time is right. For now it is just a collection of hard rubbish.)

That left the open space where our chatting had happened. Let me say that I am not someone who rearranges furniture. Once something is there, it is there for many years. That’s why the moths could party on for so long. I was ready to put the chairs back in the original place until I realised I was ready for something different, an arrangement that suits my new Couple Separated by Illness arrangement.

The comfy red chair is now next to the window.

It’s a simple shift that resonates. The comfy red chair is much more of a meditative space now. I have my breakfast here and contemplate the day ahead. I have an afternoon cup of tea here and watch the light change. I read and write here and stop to watch the birds in the garden and the wind moving the leaves.

It’s a space for one, rather than a couple. My new rhythm.

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I respectfully acknowledge the traditional custodians of this land on which I live, garden and contemplate my world – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be, Aboriginal land.

How does my garden grow?

Firstly, thank you to everyone who commented on my last post. I loved what you said, and have taken all your good wishes and hugs into my heart. I am sorry I ran out of oomph to reply to each; I am learning to just accept limits to my time and energy.

I am doing okay. Terry is becoming more comfortable in his new home in residential care, and I am working out what I want my life to be like.

As you can imagine my garden has been a refuge from the constant turmoil of the last six month.

One big change was getting a new side fence. The old one was very old, very wobbly and I worried in windy weather that it would blow over. The neighbour was a very unpleasant man who we didn’t speak to. It was easier to pretend the fence was okay, and be thankful it stayed upright.

Then the neighbour sold up and moved (yay!!). The new neighbour said “Let’s get a new fence” and went on to say “I will organise it”. Thank you Tom! Not long after we had a new fence. And I had a chance to tidy up a very neglected area along the fence line.

The main issue was the Alstroemeria psittacina. It’s a pretty thing, especially the foliage, and the bees love the flower, but it is so invasive, wanting to take over the garden. It grows from tubers which are dense and very difficult to dig out, especially around the roots of the maple tree.

I dug up what I could, then smothered the area with newspaper, cardboard and thick layers of chunky mulch. It has worked. There have been some tenacious stems pushing up between the cracks of the cardboard, but they are easily pulled out.

I worked on this over time, as Terry was back in hospital in December. One small area at a time, what ever I could manage.

Instead of an eye sore I have an area that I can access and enjoy looking at.

And a wonderful new fence!

The rest of the back garden is doing okay. Laying down more mulch a couple of years ago was the right thing to do. The mulch in the photo below has suppressed the oxalis for about a year now.

I planted out this garden bed last year

and now it is flourishing. The statice, Limonium, has powered over summer. Something else the bees love.

There are lots of things to do, inside and outside the house. I am learning not to stress about these things, not to get overwhelmed by the tasks. Instead to do what I can, when I can, when I know it is the right time to do each task. If it doesn’t get done, then that’s okay. I am doing the best I can, and that is all I can ask of myself.

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I respectfully acknowledge the traditional custodians of this land on which I live and garden – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be, Aboriginal land.

The next stage

Last time I wrote Terry had come home from a long stint in hospital, and I was caring for him, with lots of support from many wonderful people. This continued on through January, until he had to go into hospital again. Despite my best efforts and despite all the help we had, I knew I couldn’t look after him at home any more. So he moved from hospital into residential care.

Oh my goodness, that paragraph covers so much heart ache, anguish, grief, anger and emotional turmoil. At the same time I had to come to grips with the complicated funding model for aged care in Australia, and that involved appointments with my lawyer, financial advisor, banks and Centrelink, the governmental department that deals with social services.

I don’t want this post to be about those dark times; be assured that I am okay now. I do want to tell you about three phrases that have helped me get through. Maybe something will resonate.

The first is from Brene Brown’s “Atlas of the Heart”. When you have so many emotions swirling about it is a relief to be able to name them, and this atlas helped me define what I was feeling. However the powerful phrase came from her introduction ~ The centre will hold. No matter how many emotional skirmishes and battles were happening within me, I knew that my centre, my core, the essence of who I am would hold firm. That I would find my feet and get through this. It was my crucial mantra and it helped me during some dark times.

The second phrase was one of my own making ~ Dragonfly time. December and January seems to be dragonfly season as I saw so many of these lovely creatures on my walks. To watch them flit around calmed my mind. Then I found that dragonflies symbolise change, transformation and adaptability, which was exactly what we were, and are, going through.

Terry has been in his new home for about 6 weeks now, and he is becoming more settled. However, it hasn’t been an easy time for him, or me. I know it is the best place for him, and our only option, but unfortunately he can’t always see it that way. It helps me to understand that this transition time can take a couple of months. On particularly difficult visits I remind myself that it’s dragonfly time, a transition time.

The third phrase comes from Ryan Holiday:

Success, at the end of your life, is a crowded table—family and friends that want to be around you. 

I don’t need to wait to the end of my life ~ I know my table has so many wonderful people around it. People who care for me, who listen, who understand. People who not only say “How’s Terry going?” but also ask “And how are you?”. I have friends who have said to ring them whenever I need to, even in the middle of the night. Or walk with me. Or visit Terry with me. Or feed me. Or drop in for a cuppa and help me work my way through all of this. Or organise surprise picnics. Or who are helping me work out what my new life is like. And who understand when I say “Thanks, but I just need to be alone.”

I have a very crowded table, and I am so grateful for every person sitting there.

And lastly I want to give a shout out for books. I love reading whatever my state of mind, but to be able to drop into someone else’s world has kept me upright over the last few months. To escape into a book is a tired phrase, but so true. All praise to books, authors and libraries.

I give thanks

It is time to introduce you to my Fella. His name is Terry, and we have been together for about 25 years.

I am introducing him now because our lives are so twined together it is impossible to write about my current life without details about him too.

When I started blogging I considered Terry’s privacy. I am sure we have all made decisions about how much information to give out about our loved ones. After all, they are not the ones that signed up for this blogging adventure. So Terry, as the Fella, stayed in the background.

The other consideration for keeping him more anonymous was that this was my space, where I could blather on about whatever took my fancy.

However, as I mentioned in the last post, Terry is very unwell. The decline really hit in 2019, and since then there has been one incident after another ~ 10 hospital visits for various reasons over those 3 years. In that time my life has shifted to being a carer. It’s not the life I want, but do willingly, and mostly with patience and love.

I will write more posts about what’s been happening, but for this time I want to give thanks for the amazing care that Terry has been given from our hospital system.

We hear so much about our medical system being at breaking point. For those of you who don’t know, the funding model in Australia, Medicare, covers all of the cost of public hospital services. It also covers some or all of the costs of other health services, like GPs and medical specialists. The funding is provided by Federal and State budgets.

What this has meant for Terry and me is that he has been able to access world class health care largely without cost.

So the system is under great strain, but there was no evidence of this in the care he has been given.

In November he was admitted to the Royal Melbourne Hospital (RMH). Before this we had struggled at home ~ Terry struggled with lack of energy, difficulty breathing, poor appetite, increased confusion; I struggled with a lack of diagnosis (nothing was showing up on anything the GP could test), and caring in a situation in which I was floundering. It was really hard.

For two weeks Terry was at the main RMH campus in Parkville, where they diagnosed chronic heart failure. His heart is only working at 20% efficiency. No wonder he feels breathless and tired.

Then he transferred to rehab at the Royal Park campus. Two weeks in the main part and then transferred again to a secure ward. You see, Terry also has vascular dementia, and suffers from hospital delirium. This last ward was the right place for him. He had his own room with a large window that looked out onto a garden. The day light would stream in, important for dementia sufferers. There were only seven patients, so way less noise and action than in usual wards. The staff were well trained and experienced with dealing with people with cognitive issues. And it was very secure. You can imagine how reassuring I found all that. I give thanks that he was able to access this ward.

However, in each ward every nurse, doctor and allied health staff was patient and caring. I really appreciated that they treated Terry with dignity and understood the cognitive stress he was under while in their care. There was never a sense of the pressure they must be under, being short staffed. There was never a sense that Terry’s bed was needed for another. And for that care I give many thanks.

Just before Christmas Terry was able to come home. And the support has continued. He was able to get a place in the RMH@home programme. This has been a game changer. It has given us a safety net. Technically Terry was still a patient of the RMH, so services were still available to him.

Each day either a nurse or an allied health practitioner ~ physiotherapist, occupational therapist, dietician, podiatrist ~ has visited. One day we had three come, and a phone call from the doctor, as well as a visit from the nurse on Christmas Day. There is 24 hour phone number.

The help has been practical things. The OT suggested moving the bed over to make room for the walker. (How obvious, but I hadn’t thought of it.) I mentioned that getting in and out of the car was a struggle, so she gave us tips while supervising Terry. The physio set up an exercise programme and has come to help him go through a few sessions. The nurse takes blood pressure etc, and checks in to see how we are travelling. The podiatrist changes the dressings on his feet. I have done that often in the past, but I am grateful that it is one less task at the moment.

The main help has been the reassurance, that someone is there. As I mentioned earlier, before Terry went into hospital I was struggling. This time I understand what his needs are and how I can help. It’s not always easy, and things change from day to day, maybe even hour by hour. However I am getting more sleep, and I know that there are options if I need to reach out.

And for that I give thanks to the wonderful people who are supporting me. I have been told that places on this programme are as rare as hen’s teeth, and only through the RMH, not other major hospitals in Melbourne. I firmly believe that it should be funded more widely and available for all. So I give thanks that we have been some of the lucky few who have been able to access this programme and have the right care, for both of us, at the right time.

You may wonder what happens when the RMH@home ends. Well, it is designed to be short term, a week to 10 days. Terry will be discharged today, but then move onto another wonderful programme run out of the hospital, the Transition Care Programme, before finally accessing his My Aged Care funding. So the support and the safety net continues to surround us. And again, for that I give thanks…..and breathe a huge sigh of relief.

I also want to give a brief mention to my wonderful friends and family, who are also great supports to me and Terry. Brief, because I want to write more about them at another time.

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I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be, Aboriginal land.

I’m still here!

I know it is ages since I posted last.

And for some reason my WordPress emails were not coming through. So it was time consuming to find out what you had been writing about ~ time and energy I often don’t have. I hope I have fixed that now, so that your lovely posts will once again flood my inbox, reminding me that there is another world out there.

So I feel like I have been in radio silence.

Life this year has revolved around the Fella’s health. He hasn’t been well at home and had a couple of hospital visits. You can imagine the stress and worry. He has been in hospital and rehab for all of November, and I am not sure when he will be strong enough to come home.

So my life at the moment is about supporting him in rehab, which is a daily visit, usually in the morning. And then getting some time to catch up with other things, including catching up with myself.

I have learnt that caring is a demanding job, and you need so many resources, internal and external, to help do that job. So I am looking after myself, and I am doing okay. (I know you will understand when I don’t respond to comments you might leave.)

The Queen and I

It may surprise you to know that I have spoken to the Queen.

In 1970 I became a Queen’s Guide. I worked hard to get that badge, the pinnacle of Guiding. I had to pass tests to get various badges, including cooking a 3 course meal for a family other than my own and taking my patrol of 6 girls camping for a weekend with only minimal adult supervision. I was 17!

I was presented with the badge in front of my Guiding friends and family.

Then later went to Victorian Government House and was presented with a certificate by the Governor, Rohan Delacombe.

The Queen visited Melbourne in 1970, and, as a Queen’s Guide, I was selected to be an Official Door Opener.

From memory there were about half a dozen of us, both Queen’s Guides and Scouts. For a couple of weeks before the tour we were taken by taxi to the government car park in Dudley St to have training in “how to open a door for a Royal Person”. Step, step, open, salute, keep saluting, step, close.

We were taught about the protocols of interacting with the Queen. Only speak if spoken to, then using ‘Your Majesty’, then Ma’am if the conversation continues. Well, I think that’s what I was taught.

In the front garden, before I left for my big day. I look rather excited; I must have been very nervous too. That’s my Queen’s Guide badge on my left arm.

My big day came when the Queen and Prince Phillip went to the Albert Park Sports Centre.

I was doing my best door opening and saluting when the Queen stopped and spoke to me:

“Are you a Queen’s Guide?”

“Yes your Majesty.” (Well, I hope I said that correctly.)

Then off she went.

To be honest that’s all I remember about the day. I suppose I was nervous and excited. Looking back on it it seems rather surreal.

One strong emotion I do remember was at Monday morning assembly when the head mistress called me out in front of the whole school to recognise my achievement. I was mortified! Not only didn’t I want to face all those people, I was outed as a Guide. That was a very uncool thing to be, and I tended to keep quiet about it. Again, looking back, there were probably lots of girls (it was an all girls school) who thought it was a pretty good thing to have done.

Maybe my republican values began here. I know I was amazed at the expense and organisation that went into just my little part of the event. I was also developing a social justice and knew that the money could have been used in so many other ways. Now I have a much better understanding that having an English monarch as our head of state is quite ridiculous. And that our Parliament is shutting down for 10 days is even more ridiculous.

Queen Elizabeth’s death leaves very large shoes for Charles to fill, and our world will be very different.

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I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be Aboriginal land.

A tiny adventure in Brunswick

I have Jill to thank for my tiny adventure today.

Jill blogs at Filosopha’s Word. She primarily writes thought provoking pieces about the state of the United States, with regular music and ‘good people’ posts. Every Saturday she has a surprise.

A couple of weeks ago I left a comment on her Saturday Surprise post. I can’t remember what she wrote about (sorry) but my comment was about the painted grain silos in Victoria that have become a tourist trail. That prompted Jill to devote a whole Saturday Surprise to them.

As I scrolled down my attention was grabbed by a stunning art work of Jacinda Ardern hugging a woman, from a photo taken just after the Christchurch massacre. The silo was in Brunswick, a trendy inner suburb of Melbourne, not far from me.

Caring for the Fella takes time, and so I am learning to find the pockets of time that I can use, like this afternoon. After going to a friend’s exhibition I went to find the silo.

I had the street and, as it was a tall structure, I could see it…but couldn’t quite find where it sat in the street.

This photo sums up Brunswick….the old grain silo is a nod to its industrial past, the sign for an electric bike factory is a nod to its present and future and the graffiti a nod to its grungy, edgy dishevelment.

So I wound my way around. On the way I went under the new rail overpass, built to remove a level crossing in Moreland Road. After a short walk along the railway line I had a good view of the magnificent art work by Loretta Lizzio. What a powerful moment of human dignity to capture.

It was lovely to be out and about in the Spring sunshine. And a thank you to my American friend Jill for pointing me to something on my own doorstep.

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I respectfully acknowledge the traditional custodians of this land on which I live and on which this silo sits– the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be Aboriginal land.

Let’s catch up

Yes, it has been a while (aside from a couple of days ago 😉 ). It would have been easy to let blogging slide, but I don’t want that. I love writing. Equally I love all of you, my online tribe, and I miss chatting to you.

When I last wrote I had grand plans for sewing each day and blogging each week, which I managed for a couple of weeks. The last couple of months have been rather strange, with some challenges I have had to work my way through. I am content with where I am now, and hope to be a regular writer….but we will see.

What’s helped me gat back on track?

Maybe it’s getting the right medication at the right doses. It has taken a while to get the dosage right for the Fella’s heart issues. It seems to be at the right level now. I have been changing and adjusting the medication I take for my polymyalgia rheumatica. Like many autoimmune conditions, one of the debilitating effects is fatigue. There was a period where I just couldn’t be bothered. Now I am full of beans and want to be active.

Maybe it’s trying to be more mindful, more in the present. When things are challenging it is so easy to slip into a mindset that looks for dangers, to anticipate what might go wrong, to imagine about worst case scenarios.

A little of that helps me see problems that might arise and to make plans. Too much makes me hyper-vigilant. I am trying to do the things that are good for me ~ taking time to be in the present, where nothing needs to be done, just be; to breath deeply; to engage my brain and notice things; to walk; drink more water; eat more vegetables. To create. To blog and connect with friends.

Maybe it is having had Covid, which happened a few weeks ago. I was lucky, only having a mild illness. I caught it from my mother, who also came through it okay. Amazingly the Fella didn’t get it, despite also being with my mother and then not being able to isolate from each other at home. I know the pandemic is not over; I know that I can get it again and that the Fella can get it; I know that it may be worse next time. However I also know that I can cope. It’s time to emerge, sensibly.

Maybe it is the improvement in the weather. Today is a beautiful day. The sort of day where everyone you meet says “I hope you can get to enjoy some of this beautiful sunshine today.” You can feel Spring on its way.

Maybe it is that my AFL team, Collingwood, is doing remarkably well. 11 wins in a row and 2nd on the ladder. (I am a very fair-weather supporter, and only get up and about when they are doing well!)

And maybe it is all these things coming together. The challenges are not over, but I have learnt that I have all I need within me to meet them. That’s a powerful feeling.

Now on to my creative work….

I finished the map of the Maribyrnong River that I was working on last time we met.

I am still thinking of stitching maps, and last week worked on this one of the wetlands near me. The first photo is when I thought it was finished, the second when it was actually finished. It needed to have more density around the edges, more reedy, soggy vegetation.

The tangled, tufty stitch is velvet stitch, which I learnt from my stitching wheel sampler. I like the 3D effect it gives to the work. And a close up:

I am going to do a companion to this one, and maybe more ~ I do like working a series. It’s finding the time to set it up, because caring for someone is very time consuming and what time is left is easy to fritter away. At least now I can be bothered.

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I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land I show in these embroidered maps was, and always will be Aboriginal land.

Goodbye Archie

While I have been thinking about posting some new work, I want this first post back to pay tribute to the most wonderful singer/songwriter, Archie Roach*

His powerful songs were written from his heart, about his experiences of being a member of the Stolen Generation, living on the streets, finding his family and his soul mate Ruby Hunter. His words bridged the gap between Indigenous and white worlds, helping people like me to understand the impacts of institutional and societal racism.

I went to a concert last year, and was moved by his generosity, humility and storytelling, as well as his wonderful songs. I thank him for those songs that have been a part of my life for so long.

I recommend you read this obituary.

Or listen to Archie’s conversation with Sarah Kanowski

However, if you only have time to do one thing, please listen to his song “Took the children away”.

You can feel the heartbreak in his voice, being taken from his parents at a young age. He was one of the Stolen Generation, a disgusting government policy where Aboriginal and Torrens Strait Islander children were forcibly removed from their families. This extract from Common Ground explains it more:

Under this policy, the forcible removal of First Nations children was made legal. Assimilation was based on a belief of white superiority and black inferiority, and presumed that “full-blood” Aboriginal and Torres Strait Islander peoples would naturally die out. It proposed that children with Aboriginal and white parentage, who were termed “half-caste” (now considered an extremely derogatory term), should be assimilated into white society. It was believed these children would be more easily assimilated due to their lighter skin.

Children were separated from their families and forced to adopt a white culture. They were forbidden to speak their traditional languages or refer to themselves by the names that they were given by their parents. Most children were placed in institutions where neglect and abuse was common. Some children were adopted by white families throughout the country, and many of these children were used for domestic work.

News of his death came at the same time as the Garma Festival in the Northern Territory, where our new Prime Minister, Anthony Albanese, announced a referendum to decide for an Indigenous Voice to Parliament. It flows from the beautiful Uluru Statement from the Heart, and goes some way towards acknowledging the racism on which Australia was built.

*The Indigenous tradition is to not use the image, voice and name of a person who has died. However his family has given permission for his name, image and voice to be used, so that his legacy can continue to inspire.

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I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present.

Sewing #3

I wasn’t able to sew every day this week, but I have made good progress.

I am working on the left bank of the river. I could have just continued on with the running stitches, French knots and layering organza used on the other side. However, the piece needed more drama, and some contrast would help.

So I tore some shapes from the street directory, not any of the suburbs next to the Maribyrnong River, just a random page. Then I over laid the organza shapes.

That started me thinking more about the concept of the piece. I want to encourage thinking about what was here before urbanisation. Huge swaths of western Victoria was covered with grasslands and the Maribyrnong River cut through this on the eastern edge. Obviously the vegetation was also riverine, with large trees along the bank, usually river red gums.

Then came intensive urban development along areas of the river. Not all….there are large areas of parklands and sports fields and Brimbank Park further upstream from me….but not enough of wha must have been a glorious, productive place for the Wurundjeri people. Another area stopped from development is the land on which the Ordinance Factory was built in WW2. Now the developers are eying off that area.

Meanwhile, back at the embroidery. Instead of the organic lines of the right bank the left needed the straight lines of urbanisation, like streets rather than paths.

However, the thread I chose was too light and you couldn’t really see it. The yesterday I had a good session, sewing with a darker thread, which worked better.

I am careful when I sew through the thin paper of the street directory. It is so different to sewing the thick paper I used on the previous piece. Pushing the needle through that was so difficult!

This week I will add more decoration, and I think it still needs more drama. It’s nice to be back into the rhythm of regular practice, especially with the cold weather we have been having lately. Perfect for indoor activity.

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I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present.