My name is Connie00
I live with my husband, my 35-year-old Son, and my Nephew who
is 47 years old and has severe Learning disabilities. I used to be his carer
and appointee. now my Son cares for him and Me, my life has changed so much in
the last year and half.
I never thought I would need a carer or that I would have the
disabilities I have now. so, I wanted to talk to you all how things are from my
side of the fence.
MY SIDE OF THE FENCE
I'm in my Daughters house, four of us and four of them
daughter son-ln-law and their daughter and son. a house full and yet a feel
lonely, more lonely than I have ever felt, I'm smiling sharing the joke, but
they are talking over me they seem not to see me, they know I am there but they
don't want to hear what I have to say, because I might say something they don't
want to hear, I am a prisoner have be escorted everywhere. can't go out on my
own I can't be trusted.
I look at my Grandchildren, I feel sad they are so happy
their whole lives ahead of them, they don't know much about pain or heartache.
but they will and we can’t stop it, I see my life as over, or the life that I
once had, my memory is not what it was I know that for a fact
You see my brain is firing away but the signal is
all wrong they tell my lies, unreliable, I don’t know what’s truth and what’s
false. It’s easier to sit smile and nod, but inside you are crying screaming
shouting you just want the old you back. I feel so alone.
WHERE THE GRASS IS GREENER
Discreetly I find out how my mum is doing she doesn’t
look so well; I am so worried about the rapid decline of her. Just lately she
has been having episodes, she is waiting for a brain scan but it’s still
another three weeks away, we don’t know what these are but for now we will call
them dissociative episodes these are happening on average every three to four
days.
They last for about 20 minutes she does not know
that these are going to happen, they can be any time of day or night. She often
travels back to various times in her life. Depending on the era to if she knows
any of us. It’s very scary to see she want to be taken home try to tell her she
is at home. But she won’t have it. She now wears a SOS identity band just in
case she manages to get separated from us, when she come out of these, she has
a headache and closes her eyes. She is devastated when told she has had another
episode. She thinks she has a form of Alzheimer’s I really feel for her fear
for her. Our job is to keep her safe no matter what, take every precaution we
can, we have fitted an alarm on the door, she wears an ID bracelet.
We are looking to get her a watch that we can trace her if we
get worried more so if she does not take her Mobile with her, it needs to have
a panic button on the watch and possibly a phone or two-way speaker. We love
our mum and just want the best for her. Perhaps we don’t 100% know what she is
going through but we are trying. Its very
hard on all sides to know what or where to go for help.
MY SIDE OF THE FENCE
You are my family and I love you all very much, I can only
imagine what its like for you guys to watch your wife and your Mother slowly disappear,
become a different person argue and cry so much, my brain tells me I am right
and I get hurt that all seem to get angry at me, talk down to me treat me
childlike even though to you I must act like it.
But to me you are not grasping the fact that most of the time
my brain is okay and although I know and realise that you say and do what you
do is because you love me.
But I wont you to stop for a second think about your life
now, I’m going to take it all away from you. You can’t go to work you can’t go
out with your mates. You live in pain, your brain sends Signals that don’t work
you could harm yourself like fall or burn yourself. You could have one of your
attacks. You are a prisoner in your own home and in your mind. Please understand
me this is not my fault. Will I end up in an episode and not come out again. Will
my brain start to misfire more will I be lost forever.
