Gemma Bot­trill was only a lit­tle girl when her mother Zoe was taken away in an am­bu­lance and never came back. With­out a fa­ther to raise them, Gemma vowed to look af­ter her baby sis­ter

Friday - - REAL LIFE -

Star­ing at the framed pho­to­graph of my mum on the desk in my bed­room, I smiled. With long, wavy, auburn hair and a huge grin, she was the epit­ome of the per­fect, happy mother. That’s my mum, aged 27, care­free and smil­ing – ex­actly as I want to re­mem­ber her.

But that’s not Mum as she is to­day. Now she’s 43 and ly­ing in a care home, un­able to com­mu­ni­cate or move, as de­men­tia slowly steals her away from us all. We visit, but she has no idea that we’re there. I hate to say it, but she’s just wait­ing to die. Her per­son­al­ity, her soul, the woman that is my mother – well, she’s gone.

When I was lit­tle, Mum was a fun, sweet woman. She had bad hear­ing, so when she wanted to play mu­sic, the whole house would know about it. I’d be in my room and sud­denly the walls would start shud­der­ing to the sound of Madonna’s Like A Prayer. I’d sprint down­stairs to see Mum dancing around the kitchen, smil­ing that in­fec­tious, big grin.

My dad didn’t stay around for long and I was four whenMu­mandmy step­dad hadmy lit­tle sis­ter, Louise. I was ec­static to be­come a big sis­ter. “I want to be her mummy,” I said, beg­ging to cud­dle her, gig­gling at her screwed-up face and flail­ing arms and legs. I loved look­ing af­ter her, and would rock her to sleep, whileMum smiled at us. I didn’t re­ally no­tice any­thing was wrong with­Mum, thoughmy grandma Julie would come round de­mand­ing to know why we hadn’t met her as ar­ranged. Mum would agree to take us to her home or on an out­ing and then com­pletely for­get. And then one day, when I was six, Mumhad a funny turn.

For no ap­par­ent rea­son she started pac­ing around the house, scream­ing and shout­ing and throw­ing things

around. She’d never done any­thing like this be­fore, and didn’t seem like my mum. I was fright­ened, see­ing her so out of her mind. It car­ried on for a few min­utes. My step­dad yelled at me to call an am­bu­lance.

“I need help formy mum,’’ I said to the op­er­a­tor. “But I don’t know where we live.’’ I be­gan to cry, but then Louise started cry­ing too. I ran to her side and fo­cused on pre­oc­cu­py­ing her. My step­dad then gave the op­er­a­tor our ad­dress. Paramedics ar­rived in a few min­utes and forced Mu­minto the am­bu­lance against her will. She was scream­ing and strug­gling, and I wanted to run and save her, but some­how I knew that it wouldn’t help her. I sobbed as I watched her be­ing driven away.

Mum was taken to St Peter’s Hospi­tal, Chert­sey, about 20 min­utes away from our home in Heron Walk, Sur­rey, in the UK. We vis­ited her shortly af­ter. She was dis­tressed and clung to us. She looked very scared.

“Why am I here? I want to come home,’’ she cried. None of us un­der­stood what was hap­pen­ing and nei­ther did the doc­tors. We just waited to be told that Mum was go­ing to be OK and would come home. But she never did. Be­cause she was so young – only 26 – it took the doc­tors a long time to di­ag­nose her. Three years af­ter that first in­ci­dent, when I was nine and Mum was 29, we were told she had de­men­tia. Doc­tors ex­plained to my grandma that it was a term used to de­scribe a con­di­tion where pa­tients pro­gres­sively lost mem­ory and think­ing skills, leav­ing them un­able to per­form nor­mal func­tions.

By then she’d been moved to a psy­chi­atric hospi­tal – Abra­ham Cow­ley Hospi­tal in Wim­ble­don. My step­dad, like my own dad, had dis­ap­peared and our great nan, great grand­mum Ruby, then 71, had moved in to our home to take care of us.

Mum had begged her mother – Julie – to prom­ise to look af­ter us if any­thing hap­pened and it was a prom­ise Grandma stuck to. She lived just across the road so helped Ruby.

I didn’t know what de­men­tia was back then. It was just a word – the one that ex­plained why Mum was in hospi­tal. I just knew her per­son­al­ity was drift­ing away. I thought you went to the doc­tor to get fixed and came home but as the months turned into years, I learned that wasn’t al­ways the case. With­out Mum around, I felt it was my job to bring up Louise and I be­gan show­er­ing all my love on her.

Within a few years, Mum stopped recog­nis­ing us. We’d visit her ev­ery week and she’d just stare blankly, not even aware we were there. “Who are you?” she’d ask us when we stood by her bed­side. Al­though it broke my heart to see her that way, we’d made a de­ci­sion to visit her of­ten.

She was no longer the beau­ti­ful, smil­ing woman she once was, the woman in the pho­to­graph. She couldn’t move or even speak be­cause the part of her brain that con­trolled move­ment was fail­ing as de­men­tia was tak­ing over. Louise, mean­while, was my whole world. She was so young when Mum was taken away that she didn’t re­mem­ber it, which I was grate­ful for.

I taught her how to ride her bike and tie her shoelaces. I plas­tered her knees when she fell over and watched her win races on sports day. ‘I’m so proud of you, you ran so fast!’ I’d say, think­ing up the kind of things I guessed a mum might say. Louise never knew any dif­fer­ent, so she was happy to have me there, her big sis­ter, cheer­ing her on.

Ididn’t talk to my friends in school about Mum be­cause I didn’t want to do a lot of ex­plain­ing or be judged.

If Louise was bored I’d play with her, if she was hav­ing a nightmare, it was my bed she’d climb into for com­fort. She may have been too young to re­mem­ber Mum, but she still felt the ef­fects of not hav­ing her around. She’d have days when she’d just want to cry. I be­came adept at mak­ing her laugh.

“To­day, I spilt yo­gurt on my shirt. So I changed my shirt. Then I spilt yo­gurt on the new shirt too!” I’d say. Louise would burst into laugh­ter at my mis­for­tune.

Other times, jok­ing around wasn’t ap­pro­pri­ate. I knew when Louise needed a laugh and when she needed some­one to hug. Some­times no words can help, only a hug will do. We ac­knowl­edge that we can’t fix things. But we have each other.

“You’re my lit­tle Timon,” I’d say. She was Timon the meerkat, and I was Pumba the warthog from The

Lion King. They had each other’s backs and were there for each other even though they were com­pletely dif­fer­ent. That was us. My lit­tle sis­ter and I.

Be­cause Louise doesn’t have her own mem­o­ries of Mum be­fore she was hos­pi­talised, she grills me for ev­ery mem­ory I have. She misses Mum more than I do in many ways, be­cause she’s never re­ally had the real Mum, the Mum be­fore all this.

What was her favourite colour? Her favourite smell? I tell her ev­ery­thing I know and I try to fill the void for her. Sadly, I didn’t know much ei­ther. But I did have a few more mem­o­ries than Louise and I knew the lone­li­ness in not hav­ing a mum around, and I wanted to take that pain away for Louise. “She loved mu­sic,” I’d tell her. “She’d play Madonna all the time – loud and proud!” We’d laugh as we imag­ined it, putting the same tunes

Within a few years, Mum stopped recog­nis­ing us. We’d visit her and she’d just stare blankly

on and dancing around. We’ve both had to grow up so fast. Our friends can’t work their wash­ing ma­chines – I’ve been do­ing that since I was eight. I knew how to cook a de­cent meal, how to wash up. I kept our house tidy and made sure we al­ways had food in the fridge.

There are times when not hav­ing a mother around blind­sides me. When I was get­ting my GCSE re­sults ev­ery­one was crowd­ing around the re­sults board at school, ring­ing their mums – I called my grandma. When they’d com­plain about their moth­ers an­noy­ing them I’d think to my­self, you don’t know how lucky you are.

I’d give any­thing for one shop­ping trip with my mum. For Mum to fuss over my out­fit or tell me I have to be home by mid­night. Those lit­tle mo­ments are lost for­ever.

We al­ways had Ruby, but she’s had Alzheimer’s – a type of de­men­tia that causes prob­lems with mem­ory and for which there is no cure – for the past six years and in June this year, she moved into a care home too. So now it’s just me and Louise at home, with grandma Julie across the road.

Louise is 16 and I am 20 now. We visit Mum in her care home ev­ery two weeks be­cause we love her, not be­cause she knows we’re there. She’s an empty shell. If I could fix her with love, Mum would be right here be­side me now.

Some of our ex­tended fam­ily and friends have stopped vis­it­ing Mum. They find it es­pe­cially hard to see her in this state and I don’t blame them.

We don’t know if we’ll get early-on­set de­men­tia like Mum. That’s why we have big plans

But Louise and I know if it was us in that hospi­tal bed, Mum would visit. We’d rather have these ter­ri­ble mem­o­ries than none at all.

Liv­ing with de­men­tia in the fam­ily has made me who I am. I live for the day be­cause I don’t know what to­mor­row will bring. There was an op­por­tu­nity to go to Africa in the sum­mer of 2013 on a tour to raise funds for a lo­cal char­ity and while my friends said ‘maybe next year’ I seized the op­por­tu­nity. Life is too short to put things off. I’ve learned that you have no con­trol over the big things life throws at you, so you have to ap­pre­ci­ate the lit­tle things. I’m at my hap­pi­est hav­ing what Louise and I call ‘fam­ily time’ – when we climb into my bed, eat pizza and watch TV. Ev­ery­one needs fam­ily time. Ours might not be text­book, but it makes us so happy. We don’t know if we’ll get ear­lyon­set de­men­tia like Mum. That’s why we have big plans. I want to travel the world, but I can’t be with­out Louise, so she knows she’ll be com­ing with me. As for Louise – what­ever she wants to do in life, I’ll sup­port her.

Our friends say they’re scared of dy­ing. But I’ve seen worse – death is not as bad as liv­ing like Mum. It is dif­fi­cult at times to see her in the state. I haven’t had the chance to see her do all the things amum does for her child. But one thing is for sure. Louise and I will be vis­it­ing her as of­ten as we can. I don’t have a ‘mum’ in the con­ven­tional sense, but I have amum of sorts and a beau­ti­ful lit­tle sis­ter who makes me com­plete.

I share a close bond with my sis­ter Louise

My mum aged 27 and, right, in the care home

I’ve brought up Louise like I would my daugh­ter

I can’t bear to be away from my sis­ter

We’ve both had to grow up fast

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