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My journey across the small corner that is my universe. The flailing, wailing, laughing, snort rumplingness of it. The hurt, pain, and the tears. All of it. Since my Dad's diagnosis and turning 30, i feel like i have had a very small, but very real ep
Is it easier knowing that the end is coming or not?
Is it easier because you can prepare? You have a chance to say
your final goodbyes. Last touches, last hugs, last kisses? Or is it easier
having the proverbial plaster ripped off in one swift painful movement.
I don't know. Part of me wants it to be quick. The other part doesn't want it to be true. Part of me wants the news, 'Darling, he went suddenly in the night.' The other half wants to be able say, 'He was given three months, and look, its 6 months later.' *headdesk*
What I do know is that I appear to be trapped in a
cycle. I'm anger, blood boiling, spitting nails angry. I want to stab at
something repeatedly with the over whelming urge to destroy something pretty.
To tear something apart with my bare hands. Then I cycle round to soul
destroying sadness, where I feel so completed smothered by my emotions that It
seems as if I am drowning in them. So lost and cast into this choppy sea with
no life belt do I feel, that it already feels like I am going down on the third
count. Then this grim defiance settles over me. Which see's me clenching my jaw
and tilting my chin down as if walking in a strong wind. My shoulders back, stood
tall prepared for battle. Then I'm angry and the cat has taken shelter under
the stairs again, and the cushions on the sofa are crawling backwards from
me in terror.
I know WHY I want to tear things apart with my bare hands. To feel
Powerful. Because in this situation I HAVE no power.
I know WHY I am so completely overwhelmed because this is a
massive thing to be processing. My Father is dying, that's a pretty big bag of
nasty right there.
I know WHY I square my shoulders and stare down the beast, because
I need that steely determination to carry me through what are surely going to
be the hardest longest 3 months of my life.
I know the reasons behind the cycle. But it doesn't stop me from
feeling like I am loosing my mind. But its the boiling rage that frightens me.
Because it is so sudden, and so volatile that I am scared I might do something
awful. And I think its because I don't do loosing my temper. I might shout a
bit sometimes. (Mainly at the Cat) But I don't full on chuck-a-mental. I'm not
one for throwing things across a room. Or balling my fists and punching a wall.
I don't spew venom or lava. I usually have a heated, slightly raised voice
discussion. And its not because I am weak or pathetic, its just that when you
are full on screaming at each other, not much is being achieved apart from the
raising of blood pressure and tearing strips off the person you love, is not a
past time I enjoy. Deal with it. Discuss it. Move on.
So when these hot flashes and surges of anger suddenly course
through my body, leaving my thrumming to point where I am bouncing on my toes,
I don't know how to process it. I don't know what to do with it. So I've
screaming at the top of my lungs, and punching the pillows in a manner I
haven't seen or experienced since possibly being a toddler have a
I am disappointed that my logical and methodical brain ISN'T doing
what it usually does. I can be SO clinical, SO scientific in my approach to
nasty things. And it’s not working. Usually I go into shut down mode. And this allows
me to cope. But I am jabbing that button and nothing is happening. I think its
because I am not being given the opportunity TO go into shut down mode, because
I simply, am doing to much. OR people keep fracking prodding me. They keep coaxing me back out of my corner.
You know when a submarine goes onto silent running? And its using
minimum system to get by. THAT is what usually happens. And THAT is what I am
failing to achieve. And it’s WHAT I NEED.
I can't keep going through this cycle. It’s playing havoc not only
with my senses, but my intellect as well. My stress stutter its going bonkers,
and my OCD seems to have taken a turn for the worse. I am loosing threads on
sentences, Missing parts on conversations, and more alarming, have recently
lost the ability to spell, or even think in ANY type of cohesive string. I keep uttering the words, 'What was I saying?' and I have completely lost what I was going to say. My Mind is a wall of white noise, and nothing is getting through.
Ground Control to Major Tom..........
Houston, We have a problem.........
*tap tap tap* Is this thing on?
And if someone manages to find the pause button for the world, let me know, because I really could do with getting off............
Have just read your blog, if its any consolation I am not as articulate as you but I could have written every word . I feel exactly the same as you. So sorry about your dad, hope you do end up having a long time with him. Love Denise xx
Thank you. I have a feeling that this is going to be a repeating event......
Now I thought my wife was bad tempered, with a touch of
Hannibal Lectar thrown in. But you seem to be a bit of a pussy Cat, with the killer instinct of a tiger. I cant find the pause button either. Look after yourself.
Take care and be safe Big Hugs Sarsfield.xx
Sarsfield - BAhahahahaha!!!! Oh my larwdy that tickled me!!!
You certainly have a way with words!
I think you are describing how most of us have felt on this terrible journey. I was angry like you and I could have punched someone's lights out just for being happy. How dare they?!?
But, there comes a point when you accept what's going on (sort of) and just get on with it day after day. You focus on trying to make life better for the person you love so much and staying strong for them because that's the only thing you can do.
I still feel angry but most of the time I feel sad. A piece of music, a walk by the beach, a cuddle from my dog, a simple cup of coffee with friends - anything can bring on the tears because I know John won't be able to enjoy these things much longer and some things he can't enjoy now. All I can do is go back to him and tell him what I've seen and experienced and share it with him.
But staying strong is emotionally draining and sometimes I feel like going somewhere where no-one can hear me and having a good, long SCREAM! Trouble is, I don't know anywhere like that and I don't even know if I'd have the energy to scream if I did.
Thinking of you sweetheart and totally sympathising with how you're feeling right now.
Love and *hugs*, Madge x x x x
Hi Vampi, like our other mac friends ,you are not on your own with these feelings,i dont go in town anymore on a sat afternoon ,i cant bear seeing couples laughing and holding hands and my pete laid on the sofa,i go out when nessasary,hope you have a long time with your dad.hugs Chris.xx
Madge anc Chris.
Thank you both. AND **hugs** to you both. This certainly is bleedin crap.
You know what. The blogging helps. Its all just a bit. well, What the hell do I do NOW? So i've re-started this Mars to Houston thing we had going when i was at Uni. Houston, this is Mars, am I clear for landing. That kinda thing.
It makes us smile. So i guess, well that's doing something. Right?
Ps - Insomnia is a BIATCH.......
Sorry tried to post this several times yesterday but it never appeared so one day out about blogs.
Read your blog yesterday and today and do feel your pain. You write with true love and passion but at the same time also so eloquent. Right what I am going to say may sound like so many clique's and even irrelevant and I will not be offended if it ends in the bin OK ? Most of this is meant as an answer to todays question about what is the easier. The quick answer is neither is good and it depends on the person as we all come up with different answers, maybe even the same person will come up with different answers at different times.
Yesterdays Blog was about what Dad had to say - a quiet gentle dignity, 'Its not good news darling. I've got until Autumn. Its spread to my brain.' Heart rending I know, simple words but a stab through the heart to those that love him.
OK here goes the first clique, Yesterday is gone, we will never get it back, NO ONE is guaranteed tomorrow, all any of us have is today. If you look you will something to make it special
We all live our lives knowing it only ever happens to the other guy. Following recent events, think 20,000 Japanese could disagree with that. When we get out of bed in the morning and head to work we do not know if we will return, even those big red buses are dangerous and lurk around corners.
In my case I wanted to know, yes all the things you said, a chance to tell people you loved them, a time to repair friendships a time to say sorry to those I hurt. But also the selfish bit - I had a wake up call, rather than drift from day to day with no real purpose, except maybe feel sorry for myself, in the face of death I found a reason to live - sometimes the walk in that dark lonely place does lead you into sunlight, you look around and realise just how good life is - you can live more in a month when your eyes are open than in a year hiding in the dark.
For others the opposite applies, ignorance is bliss and if told would end up watching a calendar, not living a life just crossing days off.
So how do you know which group each belongs to ? Hard but sometimes others make that decision for them, probably less often these days than in the past. The other way, depending on relationship, is to ask early on would they want to know or not if there was bad news.
Think all of the above applies more to the Patient than the Carer. I know some will disagree with my position, the patient may go through more physical pain, but in this day and age they have to have the best possible pain relief and there should be no compromise on this.
The role of the carer is so much harder in so many cases, depends on the relationship of course. The universal truth is in almost every case the Carer will suffer for longer than the Patient. The Carers walk the same route, step for step and giving support on that journey. They may suffer less physical pain, their pain being more emotional, but then there is no effective medication for that.
They sit up all night, maybe dozing in a chair or a camp bed but with one ear and one eye open waiting for the least sound. They are tired, worn out and may neglect their own needs, forgetting to eat, sleep, and not a critism, personal care. They change bedding in the middle of the night, clean and make the Patient comfortable, then repeat in a couple of hours, spend the day washing and drying the bedding, cooking, cleaning and crying. The good days become less - the heart ache harder - the one they love is slipping away and being replaced by a stranger in front of their eyes - but this is just the start not the end.
The Patient finds rest at last, no more pain, well not for them anyway - but we are talking Carers now The partner left alone in a world of couples, the sympathy, help and invites will end too soon as people think they must of got over it now after all it was 6 months ago. The Son or Daughter - so many first to feel, the the Patients Birthday, their birthdays, the Fathers or Mothers Day, Xmas Dinner, then the last first but maybe the most painful, the anniversary of their passing The empty toasts - 'To those who can't be with us'.
OK Time for a message - not a lecture honest - maybe just a gentle hug and nudge in the right direction. You asked the wrong question never mind is it better to know or not, no real answer as it changes day to day, maybe the real question,
'Rather be a Patient or a Carer', no contest huh ?
Not sure, but maybe as usual gone off on a tangent. The support for Patients is getting better day by day - but then the real victims, who are ignored, are the Carers, we need to improve the care for them now !!
Love and Gentle hugs to you and yours and all Carers
Just read your reply. And thank you. I like the fact that you're to the point and your thought process is captured as you write. And no, it didn't end up in the Bin.
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