The Story Of A 29 Year Old British Girl Who Moved To LA To Make Her Dreams Come True; Only To Move Home To Care For Her Mother Diagnosed With Brain Cancer. Day-To-Day Thoughts, Updates, Love And Laughs (yes, I'm still allowed to laugh...)

Saturday, 30 August 2014

The Birds Are Singing This Night

You may think my need to write or simply the fact I am writing at such a time is bizarre or even unfathomable-but it heals me, and helps me get through hour by hour.
By writing, I don't need to talk, I don't need to speak-I can ease myself through the minutes by filling a blank screen with words.

There was no sleep last night, after my aunt and uncle left. I slept next to mum as usual, made my make shift bed on the crash mat next to her hospital bed in the living room. The district nurses ended up coming out four times in the night (last visit at 7am) to administer anti-agitation medication and some morphine.

The sounds that my mum is now making variate between whimpers and awful guttural cries. Listening to it is excruciating. I didn't sleep; I was either listening to her to make sure when her breathing stops it restarts, listening to her wails, calling the nurses out, or letting the nurses in.

Both the doctor and nurses say she isn't in pain, the noises are natural for end of life patients and more distressing for the relatives than the patients.

I'd rather feel the distress instead of my mum-but, it is horrific to hear and witness. Horrific.

Friday, 29 August 2014

"To Sleep, Perchance To Dream"

Sleep is my best friend, my enemy and my sweetest escape.

When my father died, there is a lot I have blocked out, a lot I have forgotten, except the sleep. All I could do was sleep. 
While I was still in England after his funeral and before my return to the US I remember just sleeping and waiting for it all to be over.  When I returned to the US, mum came back with me and I went back to work within a week-not because I had to, but because I wanted to, and I wanted distraction. I would sleep all day until an hour before work, shower and leave. I worked in a small Mexican restaurant in West Hollywood. I had a lot of regulars that would come in nightly and when I first went back to work the boss was great and just held my hand and made some jokes. A lot of the regulars knew and one man, called John, simply held out his arms and said, "a long trip-right?" and I was so grateful for that gentle welcome. When a world of people have no idea what to say stranger's words can mean everything.

The sleep is beckoning me again. I could sleep all night and create an artificial night for myself during the day. The stress, the pain, the fact my heart is breaking makes sleep seem such a luxurious escape.

Tuesday, 26 August 2014

When The Doctor Calls...

Out of nowhere a man pulls up outside of my mum's house riding a motorbike and comes towards the door. I'm thinking, this reminds me of an episode of  'Crime Watch' you know, when someone has a "hit" on them and a man in a motorbike helmet comes to the door and shoots them. Luckily for me it wasn't a hitman, it was mum's doctor. (Yes-I've been watching too much true crime recently)

I wasn't expecting the doctor, and certainly not on a motorbike-Anyway, he is a great doctor and came in to check on mum. Mum has secretions on her chest which can lead to pneumonia so the district nurses had prescribed an injection to be given twice a day to reduce the secretions. 

The doctor listened to mum's chest and asked a few questions. When he began to ask if we had found anywhere for mum  e.g. a home or hospice the tears began again. I think I've tried every trick in the book to stop crying in the past few months; deep breaths, looking up to the ceiling, laughing it off-none of it works-and it didn't work today. 

I told the doctor that there were no beds in any of the places we have looked in to. Believe it or not, the hospice is preferable to a home. My aunt and uncle have been in touch with most of the homes and there are no beds, the same with the hospice. The hospice is more like a hospital with the comfort level of being at home. The word "hospice" used to scare me, now I feel comfort within it. If mum can't be in her home because she needs extra care, I want her there.

The doctor left a letter entitled "Statement Of Intent". This is a form a GP leaves with a patient stating that the patient has days to live and a death certificate can be issued. I've never heard  of this before, and wish I still hadn't.

I pulled out the form after the doctor had gone and I read it. I knew I shouldn't, I knew I didn't need to see it in black and white but I did, and this is what it said:

"Statement Of Intent to issue a Medical Certificate of Cause of Death"

The first line after this begins, "This patient is expected to die within the next few days"

These words are so horrific. These words could have been written in blood or etched into skin and their impact could not be any more great.

When The Shadows Lengthen

The days are now being split up into merely hours, and I am grateful for every minute.

My darling mother seems to be at a stage now where the hours matter more than the days. 
I thought if you knew what to expect it would be easier somehow, but it is not; less shocking perhaps, but not easier. 

When my father was dying, he had hidden the extent of his disease from me, so I only really knew at the end. Days before my father died, he was still able to talk, communicate-yet his body was giving up. With my mum, she now lies in bed unable to speak for many months, but her body has been ok-meaning her organs have been functioning-but that doesn't seem to be the case right now.

Eating, drinking and swallowing have become near impossible in the past few days. Just being able to give mum half a yoghurt takes hours. Medication has now been cut and is being administered in liquid form instead of tablets to reduce the chances of choking. The doctors have been to visit, the district nurses-they all are recommending transferring mum to a home or hospice.  After consulting with my aunt-believe it or not, but, the hospice is the preferable choice. My aunt has had experiences with many homes in this area and says a hospice is a much better place-it has the specialized care she needs.

The noises from mum due to the secretions that lie on her chest, and the look when she tries to open her eyes, but her pupils just roll back,are so disarming and uncomfortable, yet these moments mean she is still here. She is still with me. The darkness has not drawn in yet.

A Weekend On A Wave

This weekend has been an emotional rollrcoaster in a tumble dryer on the Northern Sea in winter.

On Friday, due to much encouragement from all around, I set off down to London to see my most dearest friends on this earth and to get a break and a bit of a breather. The guilt of leaving was of course pretty intense, but I really felt like I was losing the plot.  
Two nights before I left mum had two seizures in a row, vomiting all over herself, eyes rolling back in her head. It was awful. We had the doctor out in the middle of the night to check her over. The carers had to cut her t-shirt off due to all vomit on her and not wanting to move her head too much. The doctor said the seizures may have been brought on by the fact she hasn't been to the toilet in a couple of weeks and the body is just expelling. 
It was a long couple of nights, as I was now terrified she would choke on vomit and I wouldn't hear her. 

I got on the train with a heavy heart and almost immediately got a call from one of mum's carers (one of my favorite-J) saying they couldn't get medicine down her. My aunt was already heading down and M & M from next door were in to sit with mum the second the carers or my aunt left.

I had an amazing time in London, I met with my friends who are my absolute rocks. I've known M since I was 5 and K and S are school friends too. It was so refreshing to be around people my own age, people that have known me for so long and people that know my mum.

They care about me so much, it shocked me. I am lucky enough to have friends that are so genuine, pure hearted and down to earth. I am caught up in a world in Los Angeles that is consumed with who you know, what you do, how much you earn and how you look. My friends are ridiculously beautiful, and not once did they start conversations about money, how much they weigh, or name dropping. Genuine love and friendship.

I wanted to be a tourist in London again so my friends luckily indulged me. I was brought up and went to school near London, when I moved to the US, my mum moved to northern England, so being back down south is home for me. As you can see, we really acted like tourists... can't go to London and not get a selfie with Big Ben.

We laughed and laughed...and cried-we each did a bit of that; on the tube, in a restaurant, outside The National Gallery-but it didn't matter. These are friends that will follow me to the gates of hell and back and I am so very lucky.

Monday, 4 August 2014

The Abnormal Normal

I've been back with Mum, and in the UK, for the past 3 weeks and the very horrifying reality of the situation now seems very normal.

It is interesting how we can manipulate the brain into becoming accustomed to such situations, that from the outside looking in, we could never imagine being ok with.

Feeding my mother, brushing her teeth, her hair, applying mosturizer, doing her washing while she is restricted to a bed IS abnormal-yet suddenly feels very normal.

I'm in the routine now and I am grateful of every second I am with Mum-but that doesn't mean it's not hard.
Luckily, the days are so packed with people in and out the smile I don to fool myself that I am ok becomes stuck to my face. I am the walking embodiment of "The Sad Clown"

The traffic of people through the house, whether it is carers, district nurses, sitters enable me to keep up the facade of being ok-the scary times are when you are alone and you think. You don't want to think, to contemplate tomorrow, just go hour by hour.  
I remember when my father died-I repeated the mantra "just get through the hour" If I could get out of bed, it was a good day.

We spend so much time planning and being told to plan-but as I get older and I keep being hit with unexpected traumatic events-I am convinced planning is an utter waste of time. 

Don't plan-just live and love. Always love. 

Sunday, 27 July 2014

Reality Taking A Big Bite

After 5 hours waiting at Heathrow, I caught my flight up to Manchester. I feel I am always prepping myself; preparing myself for the worst and taking a deep breath to "put on a brave face." I performed this familiar routine and left baggage claim expecting to see my aunt and uncle. They weren't there, which is highly unusual as they are NEVER late. Instantly, your mind goes to the worst case scenario.  Was I too late? Has there been some emergency and Mum is in hospital? Why is no one here?

I tried to remain calm and called my aunt's house, no reply. I figured I'd give them another 20mins-traffic, surely? It was. They turned up and I had prepared myself for most things except how much everything had taken a toll on my Aunt. I knew how much stress she was under caring for my Mum, but seeing her cemented it. My aunt looked exhausted, she had lost a lot of weight, and seemed on the verge of tears; her hair longer than usual, because presumably, she hasn't had a second to think about her own well being.

The journey back to my mum's house was long, rainy, and filled with more mental prep. I knew I would see a change, I knew mum no longer communicated, but when faced with it, it can be a whole other thing.  I entered mum's house, the comforting hall way, the memories of Christmas' and happy, excited visits gone before, when Mum would greet me at the door with a banner saying "Welcome Home!" and kisses and cuddles galore. Now it is a very different feeling, and a very different sight.

The hospital bed remains the same large grisly reminder of the situation-whirling every 15mins to help prevent bed sores. And there is my Mum-my beautiful, talented, intelligent, loving Mum. M from next door is by her side feeding her a cup of tea and automatically stands up as I enter to take his leave. He gives me a sad look, which I ignore and emphatically exclaim " Mummy! I'm home!" She opens her eyes and smiles-the best I can hope for and it means the world. M and M (neighbors of the year-actually millennium) are in and saying how happy they are to see me.

Mum's poor, battered body is covered in red welt-like areas. I asked my aunt what they were. Due to the steroids Mum is on, her skin is very thin meaning even a small scratch can result in blood loss and severe scarring.

Everyone left and I sat with Mum and stayed up until I couldn't stay awake any longer. It was a miserable journey over, but I was with Mum and I refused to be miserable with her-I am with her, she is with me, that is how it should be.