I did it!

Yes I walked the two laps of Princes Park in memory of my loved Terry. I walked with my good friends in Team Terry, and their support buoyed me up and along. (Also, I watched kids and dogs go past and thought “If they can do it, then so can I”!)

This was taken under the finish banner, and I don’t look too exhausted, do I?! (I am second from the left.)

There were a couple of thousand people jogging and walking, which shows how many people are touched by dementia in some way. The event raised over $450,000 to go to research and support. My wonderful donors helped me raise $3,448 of that. So a big thank you to everyone who generously donated.

As is the way with these events many individuals and teams dressed up or wore T-shirts with their loved one’s photo and name. However, no other team had sparkly headbands like ours! We created a little bit of a stir, and attracted the photographer who took the photo above.

Each participant was given a sticky labels that said “I am walking for…” and we filled in the space, and put them on our backs. It was moving to read about the people we were walking for. And there was this lovely tribute. A girl of about 11 had “I am walking for my Nanna” on her sticker. Beside her was another young girl whose sticker read “I am walking for my friend’s Nanna.” So sweet.

If you should happen to be in the awful situation of living with dementia, either your own or someone you know, you will probably find some useful information at the Dementia Australia website I found their information sheets, about a range of topics, really useful. They also have a number to ring if things get desperate (and I have been there too). Alzheimer’s Society in the UK also has a very useful website, and I am sure there are similar organisations in many other countries.

Remember, you are not alone with this terrible disease. Reach out (and that includes to me too if you like.)

The house

We are clearing out my Mum’s house. We know we need to sell it but the house has been part of us for 67 years. Mum had a big input into the design and Dad built it. She wanted a kitchen that was immersed in the life of the place, not tucked away in a separate room as so many were back then. We had an open plan kitchen/dining area before it was a thing. And she wanted to be able to look out the window onto garden.

She wasn’t one to declutter, so there are many things in the house that are part of the fabric of our lives. I am looking at things afresh. For so many years this china plate, that side table, those books had just been in the background; now they have jumped to the foreground as we think about where they are to go. And it is these things that have been the trickiest for me.

I thought Mum’s clothes would be hard to deal with, as clothes represent the person. Who we are is expressed in our choice of what we wear. However, they ended up being the easiest for me. Bundled up and off to the op shop (or they will be when I get them there!). Maybe it was that they weren’t my size (Mum was always a wee dot of a woman) or often not my taste.

Mum loved scarves, and usually wore one every day. I have kept a number of them, as I have a project in mind. More on that at another time.

She also loved jewellery. Nothing expensive, necklaces, bracelets, brooches, ear rings. She never wore makeup, except for lipstick ~ that was compulsory ~ but every morning she selected jewellery and scarves to match what she was wearing. And perfume, always a spray of perfume.

There is a part of me that feels like we are dismantling her life, separating all these things that together made up who she was. It has to be done, I understand that. I also understand that my memory of Mum is not an accumulation of all these things. I don’t a shrine to remember Mum and Dad. They are within me. I am the person I am because of them, and they will be with me for the rest of my life.

My cousins have had a chance to go through the jewellery and select pieces to keep.They were delighted with their selections. I am comforted by the thought that each time they wear those earrings, the bracelet, the necklace they will think of their sweet Aunty Ro. Memories of Mum are widespread.

However, the dismantling is more complicated because this was our home for all our lives, the hearth of our family, where we would gather. Our place to return to for Christmas and birthdays and just to be together. So, letting go won’t be easy. But without Mum and Dad it is not the same place, and now it is time to let another family build their precious memories there.

(I was going to tell you about the embroideries I have brought home However this post has headed off in an unexpected direction and has taken longer to write than I expected. So the embroideries will be for another time. Maybe a series on “My Mum’s Things”!)

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I respectfully acknowledge the traditional custodians of this land on which I live and remember – 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.

Memory Walk progress

I am slowly building up my fitness to be able to walk 6kms for the Memory Walk for Dementia Australia in May. I am walking in honour of my Terry. If you would like to know more, follow the link. I continue to be moved by the generosity of people who have donated.

Each month I am aiming to add an extra kilometre to my walks; that’s 4km in February (so I had better get my walking shoes on!)

By January I wanted to be able to walk one circuit of Princes Park, that’s the blue line in the photo. (The Walk is twice around.) And I was able to do it…and even have a little breath left over for chats along the way!

I’ll report progress at the end of Feb, as you are helping me to get off the couch and out the door.

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I respectfully acknowledge the traditional custodians of this land on which I live and walk – 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.

Butterfly time

Early this year I wrote a post that mentioned Dragonfly Time. Dragonflies, which were so prolific at that time, symbolise transition, change, adaptability. It helped me get through some very difficult times when Terry moved into residential accomodation.

Now it is Butterfly Time. Again, they are prolific visitors to my garden, and especially love the statice. Butterflies are symbols of rebirth and metamorphosis, which again is just what I am going through.

Finding my feet in this new life is a process, I understand this. I am learning that grief is a strange thing. Mostly I am fine but can get teary quite easily. Some days the exhaustion of the stress from the last years overwhelms me and I curl up on the couch. Some days I am able to get most things on my To Do List done and other days having coffee with a friend will exhaust me. However, I am gentle with myself and try to have time to bobble along at my own pace.

A big thing to think about ~ and this comes back to the butterfly metaphor ~ is the shape of my life in the years to come. What might I become in this new world? What’s my purpose? For the last 5 years or so it has been Terry and his declining health. Before that it was art. Before that it was teaching for many years. Now I am not sure. Definitely art in there somewhere. But at the moment I don’t need to be sure. I just need to be open to ideas and thoughts, and listen to what feels right.

It’s not as if I don’t have things to do. My life is about dealing with Stuff ~ physical Stuff and task Stuff, so much Stuff (another post about all of that!). And I have some plans forming in my brain. My house is in dire need of maintenance and a good spruce up. I am gathering ideas about that. I am doing some sewing, and have a few more plans about that.

I have a big plan, and it is exciting, and I want to tell you about it.

I am doing the Memory Walk in 2024, in memory of Terry, and also to raise money for Dementia Australia.

https://www.memorywalk.com.au/fundraisers/annelawson/melbourne

In May I am going to walk 6 km (twice around Princes Park in Carlton, there’s a map below), along with friends who have joined Team Terry. I am being sponsored by anyone who wants to donate money to this excellent cause. I am blown away by the generosity of people so far. If you follow the link to my page you can see that I am well over my target already!

I mention the 6 km figure because at the moment I can, on one of my good days, walk 2 km. Only a third of the distance. My plan is, by the end of each month between now and May, to have increased the distance I can walk by a kilometre.

So there is a good reason to pull on my shoes and get out the door for a decent walk each day. No excuses. And we know how important regular exercise is to being healthy, including/especially brain health. I may even shed a couple of the way-too-many kilograms I am carrying. That would be a bonus.

At the end of each month I am going to update you on my walking progress, so you will be an important part of my team too 😊

The blue is the 3km circuit. By May I will need to be able to do two of these! The black loop is my progress so far. A few more steps to go!!

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I respectfully acknowledge the traditional custodians of this land on which I live and walk – 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.

Finding my feet

I am beginning to find my feet in this new(ish) world I am in.

And I am taking it slow, listening to what I need.

I have a wonderful group of people around me who understand that I am moving at my own pace. It is reassuring to have that support, with out the pressure of expectation. Like meeting friends for coffee, or have them ring to see how I am doing or knowing I can drop in for dinner anytime I don’t want to cook for myself. Or my sister travelling across town in peak hour traffic to go to dinner with me. I am so thankful for my crowded table.

I am tired at times, and energised at others. I know the last years have taken a big toll, especially emotionally draining, and it will take a while to recover. Then the difficulties of this horrible year, with the deaths of both my Terry and my Mum.

Two funerals are too many, but with both we celebrated the loved person that each was.

Terry’s was only small (I am going to organise a larger memorial for January) and informal. I had the structure of recounting Terry’s life, and asked people to contribute their memories along the way. So it was full of Terry Tales, of which there were many, including ones his brother in the UK had sent.

One of our friends said “Everyone is unique, but Terry was even more unique”. He was a proud, fiery, passionate, opinionated man, and you were never in any doubt about what Terry thought about anything (especially the Liberal Party!). Many who came across him could only see that as brash and abrasive. However that passion carried over into friendships. If Terry was your friend he would be loyal and generous, with his time, his money and his advice. He loved helping others, spending time with sick neighbours or mowing lawns or welding things that needed fixing. And he loved a chat ~ with anyone! He knew way more neighbours than I did.

So, we laughed and cried and remembered as we stood around his coffin, with the photo tribute playing behind us.He would have loved being the centre of attention! Then we wrote farewell messages on the coffin, so our love could go with him.

Not the usual funeral, by any means, but perfect for him, and especially perfect for me. I wondered about leading and speaking. My brother-in-law is very accomplished MC and would have done a brilliant job. However I realised it was important to me to do it myself. My Terry and I have been together, side by side, through so much….I knew we had to be together this one last time.

So moving into a new life without him.

My Terry

It is with great sadness that I tell you that my loved Terry (aka ‘the Fella’) died a fortnight ago.

He was frail, both mentally and physically, so his death was not unexpected. However it was a shock. I was with him, in the residential care home, for a little while in the morning, as I always was. While his behaviour was odd and he was very weak, needing a wheelchair to get him back to his room, I didn’t expect that that would be the last time I would see him. The nurse rang a couple of hours after I left to say his pulse was very weak and I needed to come in. By the time I got there, only 10-15 minutes later, he had died.

It’s been a shit year….the emotional turmoil of Terry going into care, Mum’s death and now the death of Terry. While I no longer have these two key people in my life, I am not alone as I have so many supportive and caring people surrounding me.

And I am doing okay.

Of course I am grieving for Terry. However it is a clean grief, not tainted by regrets or guilt. I know that the choices I had to make on his behalf were made from love. I was with him almost every day he was in Gregory Lodge, the nursing home. While I wasn’t there when he drew his last breath, as I left that morning I told him, as I always did, that I loved him and wished him sweet dreams. So, there is a deep sadness and I miss him, but I have no regrets.

My life moves on, as it always does. I can feel the changes that are brewing in me. I have begun a crafty project that I hope to tell you about soon and my hands are itching to get embroidering. My decluttering continues and my garden is getting more care.

All that is still to come. At the moment I am sitting with my Terry, remembering.

Does he still know you?

My partner Terry has severe vascular dementia and now lives in residential accommodation.

When I chat to friends and neighbours a common question is “Does he still know you?”. (The second common question is “How are you doing by yourself?”, which is a post for another time.)

I understand why people ask. It is something we know about the various forms of dementia. And it is something we dread. We dread that blank reaction, or a hostile “Who are you?”. We dread that the person we have loved for so long has gone so far away from us, into a world that excludes us.

Fortunately my short answer is “Yes, Terry does still know me”.

The longer answer is, of course, more complicated.

I know he knows me because there is always a reaction when I come in. Often it is a smile, a kiss and a hug. Or it could be straight into continuing a conversation he is having with himself. Or a complaint based on his own skewed perception, usually about other residents. He always recognises me.

So he knows me; he knows that we are a couple with a strong bond. He has the memory of me as someone who helps him, who loves and supports him. I suspect he sees me as the person who can bring him back to the real world.

There are times when he rambles on about something, and often I have no idea what it is. I interrupt him ~ “I saw Mum the other day” ~ and we have a brief conversation about her, and then he goes back to his rambles. For that short time I have been able to have him come back to me.

However, he doesn’t remember my life or our life together. For example he has been obsessed with ‘the boys’. I don’t know who they are, or why they crop up in Terry’s world. “Where are the boys?” “I saw the boys this morning and then they ran away.” “Who is looking after the boys?” When I said “Their mother”, he said “But you’re their mother.” Today he asked me how many children I had, thinking I had 6! Each time he asks I tell him I don’t have any children, but obviously ‘the boys’ are the stronger idea.

Another common question concerns me working, and again the idea that I retired quite a few years ago doesn’t stick. Or where do I sleep? Sometimes he seems to think I am sleeping somewhere else in the facility. He doesn’t remember our house or the lives we lived there.

My life when I am not with him is beyond his understanding.

And I am okay with that. He remembers the essence of me and our relationship. I treasure that. He knows that I am there with him, supporting him, holding his hand, as he tries to navigate this confusing world he is living in.

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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.

I strongly encourage all Australians to vote Yes for an indigenous Voice to Parliament in the upcoming referendum.

Still okay!

I am intending to write a post that may be intense, so I thought I would send out this message to let you know that I am okay. I am finding myself again. This year I have had to work my way through lots of things, and I want to write about some of them.

I also want to say that I enjoy reading your posts. I may not always comment, but know that what you write means a lot to me.

There’s no need to comment!

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.

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.)