The last few weeks have flown by. I now have 4 days until I
fly to Australia to speak at a conference, visit numerous Alzheimer’s projects and
the KOORI project. Nearly all of what I’ve achieved has been via twitter and I am
a convert -finding new friends and enthusiastic contacts that actively campaign
for the rights of others. I’ve been planning this for months, keeping in touch
with contacts and working hard to identify places to go. I haven’t actually written
my talk yet, although I have sent in the presentation. Typical me….I tend to
talk from the heart not from cards.
Living with dementia is a journey full of hills and dips. Living
with dementia can mean caring for, giving or supporting and in my eyes I have the
easiest journey. My father’s path is the uphill one and we simply bring some reprieve
to them and enable him to take a different turning every now and then which provides
him with an easier path or something lovely to look at.
We’ve been living with my mums illness for 7 years plus now
and watching her slowly and gradually fade away from us. What a shock then two
weeks ago to get the news that my mother in law, the stalwart one, the one who
would see her great grandchildren born and go to my children’s weddings be
diagnosed with terminal cancer with around 6 months to live, A woman who has never
smoked in her life and lived in some of the cleanest air the UK has ca lung, bone
secondaries and is living in excruciating pain. My role as nurse and conduit
between services has extended dramatically and I am now a relative experiencing
the frustrations and poorer aspects of Hospital care. But I have also found a
real nurse champion, a nurse who has enabled my confidence in her and the care
she can deliver, to enable me to confidently go to Australia next week without
fear. I have been struggling with whether to go or not and the reason I can ,
is because of a nurse. It’s a nurse who has met our family’s needs. This is why
I am “such a nurse” because we can provide the holistic care, kindness, care
and compassion necessary to ease peoples pain. Whilst this isn’t always the
case, we are fortunate and once again it’s
a community nurse that’s done this. It was a D/N who noticed my mothers change
in cognition and a specialist community nurse who is supporting us now.
Mt family is close and I feel a different type of stress and
strain leaving my immediate family behind for 3 weeks in such a time of
anxiety. Watching my hubby go through this pain and knowing I won’t be around is
extremely difficult to take. Now I have Anne though, we all feel better with
her daily calls or emails and ability to speak to me like a human being-
honest, open and gentle. This is what caring all is about for me. I don’t want to
be fobbed off, told we,ll know more after…..just spell it out so that we as a
family can gather our thoughts make decisions,making sure we don’t have any regrets.
So I am going to Australia but will be SKYPING and speaking
to my family regularly. I will do a
daily tweet, but my desire to look, learn and improve my own skills has been
dampened by the thought of not being here when family need me, the constant what
if……. and the guilt that one feels when you leave people behind who need you. I
am blessed with a family who genuinely love me without condition, I was brought
up by two people like that, acquired more when I got married and have a husband
who does the same. I am a very lucky woman. I will make sure my busy schedule provides
me with learning and love that I can bring back to support the people I care
for- not only my patients but also my family.
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