It's Been A While...

Hello ladies and gents,

It's been a few days since my last post for a multitude of reasons, but as I type these words to you, I already feel better. YOU save me.

So...where to start?? Let me start with this photo to show how truly exhausted and exasperated I am after this week (don't judge, I know it's terrible for me, but this is a one off-promise!)

 

The past week has been ridiculously hard. Every day we have had one person after another coming in; either delivering Zimmer frames, stools, or a multitude of other devices to make home life easier for mum.

When last I left you, mum was heading to my aunt's to give me a break and get mum out for some time. Well, while there she fell again, and it was made apparent to us all mum needed more help and I just couldn't deal with it all on my own. They told us that effects of radiation will get a lot worse before it gets better. We are now 3 or 4 weeks after the last session and her weakness, exhaustion, mobility and cognition are pretty poor.

We have met with social workers, physiotherapists, occupational therapists,  district nurses, bowel and bladder nurses (lovely, I know...) Careline representatives, financial assessor, people installing lock boxes it goes on and on...

All these people are employed by the NHS or the town council and they could not have been more kind, efficient and helpful. I mean, it is astounding it was all free, and they installed everything so quickly, they were all fantastic, but the emotional effect of their visits and the never ending questions were outstanding. Having to repeat the same thing over and over again and hearing the reality so bluntly from an outsider was devastating.

One particular district nurse really impeded upon my iron clad emotional lock down. 

She came in as a crisis nurse after mum's fall on Sunday to immediately put help into place. She was here several days and accompanied a social worker who had to asses mum's current situation and get her (and myself) more help. She asked so many questions and when she began talking about "diagnosis...long term prognosis...long term care...hospice" I got sweaty and hot and I'd just had enough. She was being tactful, but it was all just too much.

After she had finished, I went into the kitchen and just started cleaning...everything and anything.

The nurse came in, and asked how I was. I can't remember the last time in a few weeks someone asked me how I felt. She reached out and placed her hand on mine and I instantly backed away and tears began to rise. She understood instantly and said,

"I'm here"

As I've said before, the kindness of strangers is sometimes the type of kindness that can break you. 

Confession Time...

I was considering boring you all with an account of my dreams last night...it's very possible I still will, but first a little confession...

I've been scribbling for a while now and it never ceases to amaze me that you are reading this, emailing me, tweeting me and keep supporting me. You are all pretty fucking awesome and keep me going when the blues hit home.

However, I have suddenly realized I have not told you all that you are privy to information the majority of people in my life are not.

I began writing this believing it would simply be for me, myself and I, but it has quickly gained momentum which I hope will continue. As it has built and you, dear reader, kept...well reading, it has now become words between me, myself and you. I have set up an Instgram (@TheBirdsThatSingAtNight) and Twitter (@TheBirdsThatSing) just for this blog and you. My personal Instgram and Twitter are completely separate and barely used since I've been back here in the UK and writing this.

You will notice throughout my entries that I don't use names of any of my friends, family members or others because none of them know I am writing this. I have kept these scribblings secret from everyone around me both here, and back in LA. 

Even though this is an open forum and anyone can view this, I have shied away from telling anyone for several reasons. 

I have a feeling my aunt and uncle wouldn't understand why I am writing this and feel it might violate mum's privacy. They barely use their computer and certainly don't have the word "blog" in their vocabulary; and I don't know if my mum knew she probably wouldn't fully understand it as she is right now.

I haven't mentioned this to my friends, put it on my Facebook, my personal Twitter or Instagram; even though they would read it, it would boost numbers for the site etc. but I don't want to. Perhaps, it's because it is easier to tell strangers the truth rather than those we feel closest to. Yes...I think that is it. 

When I speak with my friends and they ask me how I'm doing, I fill them all in on different things at different times and it would certainly be easier to just direct them here, but I cannot.

They know what is happening, but the words I write to you are like secret scribblings that I don't need to answer questions about.

When my friends do end up reading these lines-I love you, you are my family, but sometimes the raw truth is a little too

hard to tell x

A Slight Change Of Plan...

Sooooo...

I went to have my highly valued shower and sometimes your greatest realizations come when you have your hair full of lather and you are left alone with your thoughts.

The past few days have been a lot,and I kept thinking of going to my aunt's house  and as much as it is a second home to me, I'd have to get dressed, get mum ready and be on my guard while at my aunt's. Checking to see if she needed the bathroom, if she drank enough, was she just saying she was ok or did she just really want to come home? I just couldn't.

Earlier, when she went into the kitchen, she was in there for a while and when I went in and asked her what she was doing she said nothing. I checked and she had taken the a coffee jar, emptied it out and filled it with water. She has no idea why she did it, couldn't explain it to me. It may seem like nothing to you reader, but it was the straw that broke the carer's back.

This incident just reinforces the fact that she is just so different than what she was and frustrating that I could ask her a thousand times why she did it and she would just respond, "I don't know."

I got out the shower and called my aunt and told her the situ. I told her I was tired, I was frustrated and I just wanted time on my own. She started getting emotional when she said she understood and it was hard on her too. Then, of course, the guilt came in and that made me cry as my aunt reassured me,

"We all feel guillty".

It never ends, you feel guilty if you ask for time out, but can't continue doing everything you do day in, day out, especially with some days a lot worse that others.

As I got mum into my uncle's car, I felt more guilt than ever, she just seems so vulnerable and you can't help but question if you really are doing all you can.

With time on my hands, I've done laundry, cooked lunch...and bought some more coffee.... X

Sunday-The Day Of Rest...?

Happy Sunday Birdies!

We are heading over to my aunt's house for Sunday lunch in a couple of hours. I'm a bit nervous as mum hasn't been anywhere since New Year's Day and since this UTI her balance has been so off-but the antibiotics are helping.

Every day things just take so long it can be unbelievably frustrating. When you put  on your socks you don't give it a second thought-today it took my mum 15mins to put in her socks. I can't just do everything for her or else she won't push herself to get back to some sense of normality. Watching is so frustrating and just telling her to lift her leg, or lean this way or that can be unbearable. 

She goes into complete dreams especially in the morning due to the extreme tiredness, I presume, so getting her up and moving can take a LOT out of me.

But, hey ho, she is up now, she has had breakfast and I can go and have a shower-a little luxury for a few minutes. 

Who Wants A Ghost Story?

It's cold outside, it's late at night, I'm lying in bed and thinking of a story I was told today.

Today, my aunt recalled a ghost story she was told when she was training to be a nurse in the 1960's by a colleague. 

While training, my aunt and her fellow nurses used to have all night shifts, their break would be in the middle of the night when all the children on the ward were asleep. It was already dark, quiet and only dimly lit due to all the children needing uninterrupted sleep. 

While in the break room, as the children slept and the tired nurses downed coffee to stay awake, they began to tell each other ghost stories; this is one that was told to my aunt by a woman who was from a remote location in the Scottish Highlands. Her mother told her this true story from her own experience as a nurse in the 1930's..,

"My mother in her younger days was hired as a private nurse for a man who didn't have long left to live. The man did not have any family, no children, no siblings, only one housekeeper that hired her.

He was living on a very isolated island off the coast of Scotland, his house was in the middle of nowhere, only accessible by boat. 

Upon starting work for the man, the housekeeper informed her that her patient had lived a "very evil life". My mother would never elaborate on the details of this "evil life" but it was so extreme he was now living alone on this desolate island to escape his past.

My mother nursed him for weeks, he was barely conscious most of the time and she knew his time was coming to an end. She realized that this one particular night would be his last so decided to stay with him throughout. 

There was no one left in the house, just my mother holding the hand of the dying man. While staying by his side, knowing there were mere moments left, the bedroom door swung open and a jet black dog entered and skulked under the bed. That moment the man took his last breath. Shocked at the invasion of this unknown dog, my mother looked under the bed to remove it from the room. The dog had vanished from under the bed, was nowhere in the room and was never seen again. 

It is a common belief in the Scottish Highlands that the devil disguises itself as a black dog to enter the room of the dying to take the soul to hell."

Simple, short and bloody terrifying...I'm now going to attempt to sleep....night night Birdies....x

The Story Of A Saturday

I've just come back from an unexpected break in my ever continual "carer" routine.

My aunt came around and suggested we went to town for a drink. I couldn't have had my jacket, gloves and boots on faster if you'd told me I had an audition with Ricky Gervais...actually, I would have been faster but with no boots...

We sat and spoke of my aunt's research into the family and how she went up to the Scottish Highlands to track down the home of my great, great grandparents called 'Rose Cottage'. 

Quite a romantic story about this home that was surrounded by a raging sea which my aunt had been told stories about growing up. At 60 years of age she stood in front of the cottage where her great grandparents raised 9 children: no town in sight, one road, on top of a hill overlooking a temperamental sea. I told her next time I will be with her.

There is something about that isolation which is so appealing, just you, nature and your thoughts. Sounds pretty good.

I came back and Mum had a visit from neighbor and friend S, which she said went well. I'm sure it did, the problem is you can never be sure about accuracy with stories my mum tells, there is still a fog about her-but I'm hoping it will dissipate soon.

I'm attempting to get my arse off the sofa to cook a decent meal tonight; as it a Saturday night and the tv consists of D-list celebrities either jumping into a swimming pool or being locked up in a house begging to regain a career-I'm sure they'll be another post or three later....

My Twonk Of A Landlord

What beautiful birdies you are...

So, I'm not going to make this as depressing as the last couple of posts-purely because I'm sick of it and I don't want you to get sick of it too. So on the depressing scale of 1-10 I'm aiming for an even 5.

Yesterday, I recieved another big package from my client in LA filled with luxury biscuits, their generosity is unending. Needless to say this means I'm heading for new cavities and an increase in my chocolate addiction...

  

Mum was better with the antibiotics she is now taking as she has developed a UTI. This *hopefully* will get rid of the weakness in her legs and no more "jangly legs" -that's what I named her tendency for the scary tremors and weakness she gets...plus it reminds me of the song "Mr Bojangles"

I was up until 2am this morning dealing with my landlord back in LA which has been a royal shit show of a time. 

The time difference is so hard to co-ordinate speaking with people. I will not bore you with the whole saga, but I ended up having to contact my amazing best mate A, to drop off a check to them ASAP.

I don't want to use my situation to gain sympathy or special treatment so I originally just explained to my landlord that I was in the UK due to a "family emergency". When I was forced to explain further, I did, everything, and the email I got back said,

"Thank you for your email, please drop off your check as soon as possible"

TWONKS. 

But, what are you going to do? I wrote back,

"Not a problem, thank you for your kindness at this time".... #KindnessIsMagic

I was speaking with my best friend since high school, K, who is one year into her nursing degree. Her and my mum are very close, she came to visit me in LA a lot and takes the term "partner in crime" to another level...she is my love.

She was asking if I wanted to go to Sweden with her in the summer. YES, I would love to, but I can't plan anything in my life, not a week's time and certainly not the summer...but I can dream...

I am so knackered and am the master of cat naps...going to try 15mins so I can last the entire night without passing out....Plus, I have this beast on my lap keeping me warm...

Good Day, Bad Night (Part Two Bad Night)

Onto the night...

I got home to my aunt and mum having tea and all seemed good. I had a delivery from Amazon waiting for me. I was so happy to receive a surprise parcel (I LOVE getting mail) and it was from my amazing clients back in LA.

It included this book called "Devoted" about amazing dogs and how they have helped to heal and care for their owners. It was so kind of them. I love them.

My aunt went, the evening carried on as normal until my mum needed to go to the bathroom. She has been so,so weak recently and getting off the sofa is a huge deal. I got her up and as I was walking her to the toilet, she seemed to glaze over and suddenly her legs gave way and  she just fell to the floor. I was holding her under the arms so she didn't hurt herself and just fell on her bottom-but Jesus, it was scary. 

I immediately asked her if she was ok and what happened and she said she just "passed out". 

The problem now was how to get her up. I called my aunt-my mum was telling me not to, but I told her I had to. My aunt suggested I get M&M (amazing next door neighbors) to come in and help, but instead I left mum to rush across to get mum's good friend S to help me get her up. S has been an amazing neighbor and friend during this time and came straight over.

It was horrible to walk in and just see mum sat on the floor utterly helpless. I could tell S was shocked but she hid it well. After about 15 minutes we managed to get mum up. 

Sue stayed and is great at making light of any situation, but as soon as she put her hand on mine to comfort me I felt the familiar burning hot tears stinging my eyes, and picked up a mug and took it into the kitchen to compose myself.

I ended up having to set up the sofa bed downstairs as there was no way mum would be able to get up stairs.  

As I left her downstairs, I went upstairs, my neck ached, my back ached and I was scared and exhausted. I then had to go through my US bills and try to pay them.

Like I said, good day, BAD night...

Good Day, Bad Night (Part One-Day)

Heyho Birdies-

Firstly a monstrously HUGE thank you to all of you that continue to email me/tweet/message me your deeply personal stories and thoughts on my situation and my scribblings. Please keep them coming; I love reading everything you write and enjoy writing back even more!

Anyway...onto the cancer thing...sigh...

Yesterday (Wednesday) was a mightily crap day (or night, rather). My aunt came over to take charge for the day. I think she can see how desperately I need a break. 

I took my time to shower (luxury) got ready and went into the local town. 

To be honest, I had to do one thing-go to the bank-I did that, then had no idea what else to do. I didn't feel like shopping and really, I'm not in the position to be spending money on clothes right now, so I just walked. I don't know the town too well (I grew up down south, and my mum now lives up north) and it's a small town with not much to do, but to have the time to wander was pretty odd. I didn't know what to do with myself and ended up in a coffee shop trying to carry a ridiculous shaped cup to my table without spilling it.  I sat and read YOUR awesome correspondence, drank my latte and watched life going by. 

While sat drinking out of said ridiculous shaped cup, I couldn't help but notice the amount of people sat outside. It was freezing outside and it didn't click straight  away but the reason was that they were having a smoke. As I've said before, I used to be a smoker and cannot stand ex-smokers preaching about the dangers of smoking; yet, I looked at them and wanted to say, "come and see the effects of cancer, the people it effects-it fucking sucks. Why don't you do yourself a favor and just quit now. Please"

It is not my place to tell anyone what to do, if you wanna smoke-it's legal, you can do what you like, but I couldn't help but wonder if they saw cancer first hand (which we know for sure smoking can cause) if it would change anything. Who knows, but it made me keep watching them until both parties were way too uncomfortable...

I left and headed back to mums-feeling a lot lighter as I'd had a mini escape from reality, but worried in case anything had happened when I got back...

I Can't Be Blue, I Have You...And You...And You

All these posts are about me, my life, my problems...blah blah blah. Granted, this is a blog that began life as my open diary but this post is about how YOU allow me to cope with days like these.

I was in tears before midday-not a good omen for the day to come. It all got a little too much today, I woke up exhausted, stressed,teary and worried (and that's before I'd even crawled out of bed)

Many of you beautiful birdies are in similar situations to me, or have been, and you will understand what I mean when out of nowhere it can all get a bit too much.

It was hard getting her out of bed and I just seemed completely useless. My aunt turned up unexpectedly and I just said tearfully, 

"I need to go upstairs"

I went and just cried. I just needed time. Time to sit alone, not talk to anyone and just cry. 

There were so many things on my mind, I couldn't even list them to you.

My aunt told me to just stay in my room and have some time to myself as she dressed my mum and I did.

I hadn't felt so despondent since mum first came home-I think things are taking their toll. However, I had no choice but to get myself together after my aunt left and I did-and it was thanks to you.

I sat in my room staring at the unexpected hole I found in my leggings, and thought about your emails; your tweets, your comments on Instagram and as cliched as it may sound it gave me the energy to get off my arse and carry on. 

This shitty, shitty situation in my life cannot be drowned in my self pity it is about making my mother the priority and make life as amazing as possible; and you all are making that happen.

When I see emails from you telling me your most personal stories, when I read your tweets, from continents away, telling me you are sat by your mother's bedside in her last hours-it makes me feel just that little less alone.  

It makes me realize other people are going through extreme struggles too and I cannot falter in making my mum's life as happy as possible. 

No one is exempt from pain-we simply have different levels of it. So, if you are reading this and you are feeling as though you've had enough-it's ok to feel that way-I may never have met you but I'm here listening, the way you have listened to me. 

Strangers can become the best listeners and thank you for continuing to listen to me.

If you feel like allowing me to return the favor, contact me here and let's make life a little bit more beautiful. Thank you x

Email: TheBirdsThatSing@gmail.com

Twitter: @TheBirdWillSing

Instagram: @TheBirdsThatSingAtNight

Your Thoughts Please, Dear Readers...

Today was  tough, not sugar coating it, it was fucking rough. Probably the hardest day since before my mum's brain surgery. Days like these remind me how much of my Mum is missing right now, there are sparks every so often of her coming back to her old self, but they are fleeting, but they are there.

So, here is a question I have for you and I would love your honest feedback in the comments below or, you know the deal, you can write to me at: TheBirdsThatSing@gmail.com or tweet me: @TheBirdWillSing

So...my aunt has been talking to me about heading back to Los Angeles for a bit. I haven't worked in nearly two months and obviously have my life in Los Angeles that I have built for the past 9 years which I need to keep going. I suggested going back for 2 weeks this month to work and get some things settled back there, she didn't see the point in such a short amount of time and suggested going back for longer.
We have a review meeting with Dr T at the end of this month just to see how Mum is feeling, then a scan will not take place for another 4-6 weeks to see how the radiotherapy went. This will be a very important meeting and I obviously would never miss that, but my aunt suggested that I go back in the interim.

At the moment Mum needs me here 24 hours a day, we are hoping to see some more improvement as the weeks go on, but still she would need a lot of help. My aunt can come once a day, but not provide  24 care, so she has contacted my mum's GP who then called me.
The district nurses let me know that the local hospice has respite care and day visits. I could have vomited at that word. The nurse assured me that hospices aren't what they used to be, but I can't let that happen-mum would hate it and I couldn't let her go anywhere she didn't want to be.

My problem is a tough one. I don't want to leave here, I want to be with her as much as I possibly can, but life is getting in the way; I have bills, an apartment, a car and I don't know what to do. Now, this is where you guys come in...one wonderful reader of these scribblings of mine emailed me to tell me their story and suggested I check out a website called GoFundMe. Have you guys heard of this? Donated via it? Used this?

It is a great idea, basically a forum for people who need help in different ways in life (mostly medical from what I've seen) they tell their story and people donate to help them reach a goal.  I have no idea how comfortable I am with thinking of doing this myself, however, it is a beautiful idea that people out there need help and generous souls do just that.

I'd love to know your experiences with it, what you think, and if you think it is something I should even consider to allow me more time here with my mum.

I will be reading your comments with great interest!

x

Sunday Funday...Or So I've Been Told...

My first blog of 2014...it feels so shiny and new and different and...wait...nope...it's just exactly the same.

Anyway, I woke up today after dreaming about rats-naturally I looked this up and found the following:

"Dreams about rats and mice usually reflect the worries which are "gnawing" you. Seeing a rat: you will go through some unpleasant experience with other people."

Cheers for that, subconscious. 

We were supposed to head out to a pub in the country today to get Mum out and give us a change of scenery. Dare I say it, I was actually looking forward to see another set of four walls and drinking some good beer.
I woke up and knew it would take a while to get mum ready as the end of radiotherapy has seen her lathery and fatigue get worse. I made her breakfast as usual and brought it upstairs. What follows was her complete inability to get out of bed.  She doesn't have any problem usually but it was as if she couldn't remember how to. 

I kept saying, 
"Just swing your legs out and push yourself up"
"I know...I can't, my back hurts" she'd reply

I finally had to pull her out and once she got up she seemed fine. She headed to the bathroom and I waited...and waited for her to get up and she simply couldn't. It was the most bizarre thing, she was talking to me coherently enough but just not able to get herself up; seeming to be a mix of tiredness and inability to figure out exactly how to stand up.

I ended up calling my aunt who had to come down and help me get her up and sat downstairs. Needless to say the pub (and my escape for a few hours) will have to wait.

Incidents like these are uncomfortable and awkward and frustrating for both parties. It is undignified for my mother and unpleasant to talk about. I don't particularly desire to go into a lot of the really unpleasant things you end up having to do when you are looking after someone on a 24 hour basis. In my case they are things you never imagined or wanted to have to do for your parent, but this is what comes in hand in hand with caring for someone on a daily basis.

We had been warned that the effects of radiation will become worse before it gets better, and what's ironic is that she was in better shape during radiotherapy than she is now it has ended.  She seems ever so out of it and distant. 

Today I even asked her rhetorically,

"Where have you gone Mum?" 
She sighed and said, "I'm not sure darling, I don't know..."