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| MsNemi |
I'm writing this because I need to get this out there. Over the last few months there have been a succession of hard, horrible things happen to myself and to people I love dearly. Now is not the time or place to go into them.
It's been a very hard few months, over the last 18 months everything I knew, everything I relied on has been tugged out from under me. A few people know some of what has been going on, it's been really, really hard but I thought I had turned a corner, especially after a recent hard won victory.
But today I was told something I hoped never to hear, nobody does. So this blog isn't about me. It's about an amazing, brave and wonderful person who deserves a far, far better hand then she has been dealt and she has never moaned or complained. And she deserves credit for that. If I ever wrote about this under my real name she would be unbearably distressed, but here on IC I have the luxury of anonymity. And so does she.
My mother is an amazing human being. A tiny little woman in her fifties, quiet and unassuming yet so full of fight and quiet calm she amazes me and those around her.
In her twenties she cared for my brother, who grew up with a life threatening birth defect which was later fixed by a great deal of traumatic surgery. In her thirties and forties she cared for my Gran during her long and slow decline. Another wonderful person who bore her troubles and illnesses without complaint but who lived a full span and finally died surrounded by those of us who loved her most. During all this my parents worked hard and made sacrifices so they, and us, their children, could have a better life than the one they had had in their youth.
They worked hard and were lucky, they came from nothing. They made a little money, enough so they could retire early and travel and otherwise enjoy themselves. And then my mum got sick.
She was very ill, we thought it was cancer. She was so thin and pale and exhausted. It wasn't, it was something else, rare and nasty, but with the right medication she would live a full and happy life. And so she did. Although it was hard and she couldn't do quite as much as she could before. But this was her time and she was determined to enjoy it.
A few years later she started finding little things hard, her arm didn't seem to be her own. We didn't know, she never told us.
Two years later she had a diagnosis. 'Don't get upset,' my Dad said, 'We have some bad news, Mum has Parkinsons.' It was very early onset, she was only in her early fifties. It didn't seem fair but the doctors said the medication would help and she would probably live a pretty full life, perhaps a little shorter and tougher at the end than we thought it might have been but a good one nonetheless.
And so we got used to it. And they travelled and had fun and experienced wonderful amazing things, and she sung. Oh, how she has kept singing. And we all got used to the idea. But slowly it was clear the medication wasn't really helping, things seemed to be going pretty quickly. So many small (and big) things she couldn't do anymore, like putting her coat on, making dinner without help, finding the right word for things, picking things up, not spilling a drink, writing her own name. But three years have passed since then, we expected it would get harder.
About a year ago, the doctors told my parents they suspected it might not be Parkinson's. They would have to run some tests. They needed to be sure.
Today my parents visited me. 'Don't get upset,' my Dad said, 'We have some bad news, Mum doesn't have Parkinson's.'
She has something very different, a form of dementia related to Alzheimer's. But it attacks the areas in the brain that control movement. They had looked at the websites and they told me not to look. 'They all say six to eight years,' said Dad. 'She's already had it for five, she should be in a wheelchair by now but she isn't'.
They've known since May, but didn't want to say anything, possibly because of all the other things that have been happening in our lives, maybe because they wanted some private time to get used to it. I don't know, I'll never ask.
None of us cried. Well, a little, me and Mum leaked a bit. We looked forward, to filling that time with amazing and wonderful things. To my family being together, to holidays and special times, things to fill the long slow days, which there will now never be enough of.
And then they went home, and I rang a couple of friends, and I rang j_b, who has problems of his own right now and I spoke to one wonderful special person on IC and I went out to meet up with a friend I hadn't seen in years, as planned, to take my mind off things and hear about his finally meeting a family of brothers and sisters that has filled him with so much joy it's contagious. And I smiled. Because life goes on.
And now I sit and think about my mother; my wonderful, amazing mother, who has never asked for anything for herself, but has looked after others and been strong for all of us. There she stands, looking at a future filled with immobility, wheelchairs, feeding tubes, pneumonia and sepsis which will kill her in the next five years, and she never complains and she never whines. And I wonder how I can be strong for her, how I can hide my tears, how I can be for her what she has been for so many people and fill her life with wonderful things.
She will want for nothing, neither love nor care. She will have everything but the life she should have had.
As she fights this with all her courage and dignity, I want to rail and scream and cry at an angry God I don't believe in. I want to be strong for her, and I will be, but tonight, I'll have a drink and cry a little. But most of all I want people to know how incredible she truly is, because she will never tell anyone.
| 29 Jul 08, 6:38 AM x_Raven_x UK(CR), 6 yrs |
I can't offer words of wisdom I'm afraid. All I can say is that I found your story very moving and that I hope you find the strength, courage and support to continue to be the person your parents very obviously love. Live your life in such a way that when
Your feet hit the floor in the morning,
Satan shudders and says:
"Oh Shit! She's Awake!" |
| 29 Jul 08, 7:41 AM Red_Shoe_Toy 4 yrs  |
Brave comes in many different shapes and forms, you're both heroes in your own way. Big hugs I will be thinking of you. xx If you can't be a good example - you'll have to be a terrible warning |
| 29 Jul 08, 8:47 AM Pierced_Knight 5 yrs |
You know where I am if you or j_b ever need a chat or a shoulder. My thoughts are with you two and your parents. PK x x x "I'm just a bloody normal bloke. A sarong-wearing normal bloke who likes a bit of torture and cloud formations" Mark Brandon 'Chopper' Read (and a little bit added by me). |
| 29 Jul 08, 9:15 AM Crystal_Eyes UK, 5 yrs   |
Beautiful blog honey. Stay strong, keep writing here if it helps, and you know where i am if you need a shoulder. Huge hugs. x ------------------------------------------ |
| 29 Jul 08, 9:42 AM just_the_two_of_us 4 yrs |
My Husbands Dad had this, they all said it was a stroke, the doctors and the hospital said different, we had a feeling it was not a stroke The only words I can give you is to start to look for help and as much as possible, now rather than later. http://www.alzheimers-research.org.uk/ This is a good informative site, there are many out there I wish you luck with this, sending you hugs, and make sure everyone knows so you can all receive help as and when needed. |
| 29 Jul 08, 10:08 AM jukejointjezabel 5 yrs |
I read this last night, blubbed for about an hour and then couldn't think of a comment to make that even came close to how this blog made me feel. It's just a beautiful blog and the bond you have with both of your parents is very obvious from your words. Big hugs to you x |
| 29 Jul 08, 2:07 PM mini_velvet UK(EH), 6 yrs |
That's one of the most beautiful blogs I've ever read, your love for your parents shines through. You know where I am if you need an ear chicky xx No colours or shapes |
| 29 Jul 08, 8:41 PM Shell_Bell 4 yrs |
Beautiful. Sending Love and Hugs. You know I'm always here to chat too my love. X |
| 29 Jul 08, 9:50 PM MsNemi UK, 4 yrs |
Thank you all so much, it's lovely to know that so many people here have such big hearts. I appreciate this more than you can know. Hugs N One of God's own prototypes, a high powered mutant of some kind, never considered for mass production. Too weird to live, too rare to die. |
| 30 Jul 08, 12:06 PM Enigma73 UK, 3 yrs |
I dont know you personally, but as somebody who has worked in hospitals around people who suffered this, and other very cruel conditions, i really do feel for you and your family.. Unfortunatly it seems it is the nicest people on the planet that get illnesses like this, whilst the arseholes of the world skip by unscathed. Times will be hard, but your family sounds amazingly strong. A bond my family has never had. Use each other.. Laugh, cry, scream, shout... whatever it takes... Be strong, but most importantly, let others be strong for you too. Enigma... |
