Her Final Birthday

The other week, it was Auntie's birthday and it will be her last one. Short of a miracle, she will not see her next birthday.

We had an excellent day. She was quite bright that day, and there was a lot of laughter. Uncle P, her and my mum's brother, was up from Sydney and he bought the entire family fish and chips. He even bought me a different meal because he remembered I don't like fish. Auntie ate some chips.

We were all there: Mum, Dad, Brother, Cousin, Uncles, Grandmama... in the afternoon a friend of ours with an accessible van brought Grandfather out to visit too. My auntie's goddaughter (who went to school with me but was a year above me) was there too, the first time she'd been at one of our family functions - she coped wonderfully. I have seen her a couple of times since as well, and other people who I know are very important to my Auntie. These are the people I will see at her funeral.

It almost feels like a dream now.

We had champagne and I tried to drink it in the spirit of it all, but I really couldn't. Uncle C was more than happy to take care of it for me. I think he also took care of Auntie's.

We spent way too much time talking about how it's so strange that we have the cutest pets in the world. We clearly just pick well.

We all spent a lot of money on her, and I would do it again in a heartbeat.

The evening was very difficult, and not all of my friends understood that. After being positive all day, I cried like a flash flood in the evening. Because we had just celebrated her last birthday, and I am so happy to say it had been excellent.

We got no respite because the next week was Mother's Day (respite came later), and it has always been a celebration for Auntie, Grandmama and my own mother. It's a team effort; raising me, Brother and Cousin. The celebration was at our house and it was a bit quieter than Auntie's birthday. She was also much, much sicker. She lay in her recliner for most of it and rested. But it was Mother's Day and we got to celebrate it together.

A Mother's Day Montage

There is a lot of lasts going on, but also some firsts. I knitted her a scarf the other day and it's the first time I have successfully completed a knitting project. I'm meeting some people for the first time (or the first time in a long time) and I can see why they are so important to my aunt.

There is sadness, there is crying. But there is this strange sense of peace. You can't spend your life being sad all the time, because it is not really living. It's a sad situation, but you cannot be sad all the time. Otherwise you will die too.

So today, Mum went to Meals on Wheels for the first time in months and she's going to see two friends for coffee. She'll go see Auntie in the afternoon. Grandmama had a fall last night so it is important that she goes to the doctor and I will take her, and I don't know when we will see Auntie. So Uncle C is taking care of her this morning. And that is okay, we can just take it a bit at a time - and dwell on life, not the death.

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Dear World, Thank You for the Respite

A lot has happened lately, and I haven't had the energy to blog about it. The days are long, and each is different and each is so similar. Palliative Care is a strange kind of in-between. A drawn out waiting room. There is some beautiful about it. I continue to hate it, on many levels, and on so many others I have grown used to it.

I see a lot of people who I don't normally see, and the thought crosses my mind: "These are the people I will see at her funeral". It's a strange sort of thought. In some ways a terribly dark thought, in some ways a very comforting thought. Her goddaughter is someone I have known from school, though she was not in my grade, and I have been able to talk to her and it has been a great comfort for me.

Auntie was discharged from hospital and is now under palliative care for another hospital, but as an outpatient which is great news.

We do some things that I'm sure psychologists would say are not healthy. Spend a lot of money on her. I don't care. Nobody can tell me otherwise. What I did learn thought was it's okay to have 24 hours away, and recently I had a 24 hour break to Sydney - about an hour plane ride away.

I saw my cousin who lives down there. We ate food. We drank. We went and saw Lion King at the the theatre. My friends and I sat at Starbucks and drank and read our books for a couple of hours.Forget the rest of the world. Pure Bliss.

It was a kind break the world gave me away from the explosion of stress the world has given me - good stress and bad stress. In the past week, I am now employed in three different places. I am so thrilled. Every single one of these employments are in the disability field - one of them is specifically in speech and communication, and is with Charmaine. These are all excellent things. I can't wait until I can tell you about them properly.

Uni continues to throw never-ending study at me, and in amongst all of that we've had my Auntie's final birthday, the final Mother's Day (both of which I will talk about next post) and never-ending issues with Grandfather...

And so, the world exploded with stress. Blogging became a distant dream.

But I was given 24 hours. 24 hours to breathe.

24 hours without guilt. 24 hours with sunshine. 24 hours with friends (who I am frequently neglecting).

Thank you for the respite world. Now I can return to it all. Discussions of how many milligrams of what medication Auntie has taken or should take are back. Cleaning the house is back. The days that are so similar, yet so different are back.

But I got a break, and it was fantastic.

Give yourself a break sometime soon, too.

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Dear Internet: I am an Idiot...yet again

Some days suck. There is no need to put it any other way. Of course, I always try and find the good in all of the days but you are still allowed to say: overall, that day sucked.

Today is one of those days. 

Even as I try type this, my beautiful boxer dog is behaving as an inquisitive toddler and won't let her snout be out of anything except for of course those things she is allowed to have. 

Some of you may have read my recent post about my aunt being in palliative care. Thank you all so much for your support. She is keeping on, her spirits seem bright and my mother has made sure she has about 14 different sets of pyjamas complete with matching bed socks. 

I think that is getting me down a bit today, but it's not the only thing. There is a bit of this stuff still lingering, and superficial though it may seem it is having an effect on me still. The daily stresses of uni and work seem to be piling on and today I was feeling like this:

Except my figure isn't early that good.
Picture Source

But I am not an idiot for feeling like that and I do not need to apologize, I know that much. 

My reasons for being an idiot are similar to the first time, except this time I have been taking my meds like an angel child. 

This doesn't really help if you're not taking the right meds. 

Last time I saw my neurologist, I got a script for a higher level dose of medication. Unwilling to up my medication yet, I was taking one of the higher dose once a day instead of my usual lower dose twice a day. 

It really sort of sucks when you mix up the bottles and start taking the low dose once a day...

Dear Internet: I told you I am an idiot. 

The effects of the lower meds are starting to show. I couldn't make it through uni today. The lack of function of my left side combined with my general feelings of crap, really meant today was not sunshine filled. 

Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture. I even have had moments of aphasia when I couldn't think of the English word for wash cloth but I could get the Afrikaans one out (shame nobody in the house spoke Afrikaans).

So, now it's time to reset. It's not an easy task. It's exhausting. I am already exhausted and I feel like the world doesn't understand there is only 24 hours in a day and 7 days in a week (does anyone else feel that way?) but we will get there.

It's okay to need to push reset. We do it with our electronics enough, and it is okay and necessary to do it with ourselves.

I am so grateful for everyone's support - near, far and cyber.

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Palliative Care is Beautiful and I Hate It

My aunt is dying. I have  written that sentence out many times before and I have even said it a few times, with a dull feeling of numb acceptance.

Sometimes I don't know why they have started a new treatment. The other day they started chemotherapy. Do they honestly think it will work? Really?

My aunt is dying.

 

Mum, Me, My Auntie - late 2012.

             

The room is beautiful. There is artwork on the wall and, short of a funeral, I have never seen so many flowers for a single person at one time. I signed to my mum, when my aunt was sleeping just now, "which ones do you like best?" But she replied "I don't know" because it doesn't really matter. They are all beautiful and I hate them all.

The room would've once been a 4 bed ward, back in the day. There is a large and not totally uncomfortable couch, two Regency chairs (think of special needs recliners), another recliner, other chairs - no shortage of space for visitors. My uncle stays here every night and the mattress, as far as I can see, doesn't look like your run of the mill back breaking hospital mattresses. It looks like it may actually fit him and his long legs.

An awkward family photo - my 19th birthday. (Uncle is taking the photo)

      

Nobody writes "get well soon" anymore. Nobody buys those sort of cards. They write that they are always thinking of her and they are sending all their love. Perhaps there are even people praying for her, I don't know.

I know she has had a good life, but it wasn't meant to be like this. Nobody knows what the future holds, but I can assure you this isn't good. She will not attend her son's or nephew's or niece's weddings. I doubt she will see her son or myself reach 21, my birthday is in 5 months time.  Our dogs will both out live her. Her elderly parents will likely outlive her. No grandchildren.

And I simply hate it.

She is so much more than my aunt. She shared the place of mother along with my own mother and maternal grandmother. I could not figure out why I was not one for the general Mothers Day dedications on Facebook, until I realized it didn't feel right until I included all three women. They are all significant in raising me.

We do selfies and gosh don't they look good! This is the photo I use for my Mother's Day dedications. It was taken on Christmas Day, 2011. My Aunt, Mum, Me, and my Grandmama.

My aunt is dying.

Palliative care is beautiful and somewhat serene. But no matter how many flowers or presents people send, no matter how large and comfortable the room and no matter how many prayers are said: my aunt is dying.

And I hate it.