1)
How
much life changes
It
may seem remarkably obvious, but dementia changes lives. It REALLY changes
lives. The problem with telling people that is, until you've experienced
it, you don't realise just how much. Clearly dementia utterly altered the
course of my dad's life - last month he should have been celebrating his 90th
birthday. Instead, the last 19 years of his life were characterised by slow cognitive
decline and eventually a very marked physical decline too.
In a
very different way, my life has completely changed as result of my dad's
dementia, and it will remain so for the rest of my life. Those experiences
don't leave you, even if you don't go on to work with people who have dementia
as I have. For me there are two ways of approaching this change - either
embrace it, appreciating what you've learnt/are learning and making the
most of that knowledge by sharing it for the benefit of others, or at very
least, allowing yourself to be at peace with it. Or you can rail against it,
trying very hard to block it out, pretending it isn't or hasn't happened. I'm
yet to meet anyone who has successfully achieved the latter, but that isn't to
say it can't be done. As in all things, it is a matter for the individual, but
to at least have a genuine awareness of the way dementia changes lives is, for anyone
affected by it, the beginning of finding the path that is right for you.
The
great problem when my dad was living with dementia is that I wasn't a
researcher, or an observer of all things 'dementia'. I never Googled what other
people's dad's who were living with dementia really enjoyed. Nor did I attend
dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are
reading this means you are one step ahead of where I was!).
I
learnt what worked for my dad eventually but it was often through trial and error, and
when I think back so much time was wasted. For example, I would never have
persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the
TV on day one and replaced it with the CD player and music collection that
brought infinitely more joy to his life. I’d have made the environmental
changes that personalised dad’s room much quicker, and the life story work
staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too.
We'd
buy things, like CD's, for birthdays and Christmases thinking it was nice to
space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock'
as it were. Get as many lovely things as you can afford and enjoy every single
one of them as soon as possible so you have them for as long as possible. My
dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that.
3)
What my dad would have REALLY wanted
This
is tricky, because no one likes to think about a loved one
developing dementia and eventually becoming physically frail and needing a care
home or hospital care, or deciding about resuscitation and end of life
preferences. The problem with never having these conversations, however, is that
you are completely in the dark when decisions have to be made, and where
dementia is concerned, decisions do eventually have to be made.
The
most I ever knew about my dad's wishes? Dad would walk past a particular
churchyard and say he wanted to be buried there. And he would very occasionally
say that if he was very ill to 'take him out the back and shoot him'.
Basically,
we didn't have a lot to base our decisions on. Yes, a deep love for and
understanding of my dad, and a strong sense of doing right by him and
adhering to what little we knew of his preferences (of course the law doesn't
allow for what dad actually wanted!), but beyond that technically it was
guesswork.
So if
you have a chance to talk about Power of Attorney (in England this is in two
parts, Health and Welfare) or make advance care plans, do it. It's difficult at
the time, but even more difficult down the line.
4)
How much memories matter
There
is a massive focus on lost memories for a person who is living with dementia
(despite the fact that dementia isn't just about memory problems), but less
focus on how those of us around the person allow memories to slip away too. All
those minutes, hours, days, weeks, months and years I spent with my dad during
his dementia, and yet I have a comparatively tiny collection of photos, and no
videos or written diaries.
Granted,
I wasn't part of the smartphone generation back then, but when I think about
the amount of moments I capture as a mummy to our daughter, I hugely regret not
capturing more of my dad's special moments. And they were special, so very
special, even when dad's dementia was very advanced. There are no second
chances to record those moments, and even if you never look back at them, at
least you have them. I don't have that option now, and while the memories in my head are
strong and the photos I have very precious, I could have had so many more mementoes
of our time together.
5)
The lowdown on care homes
When
you are suddenly confronted by a doctor telling you that your father won't be
discharged home from hospital but instead must move to a care home, it's a
shock. It's even more of a shock when you're asked to find a care home and have
no idea what you are looking for.
We
first encountered that challenge 14 years ago. These days there are loads of
websites offering you advice, and I weighed into that debate a few years ago with this blog. Ultimately, my very top tip would be: Don't choose a
care home that looks the best, choose one that feels the best. Gut instinct is
crucial. And even if you never ever plan to go into a care home yourself, or
for any loved one of yours to go into a care home, it doesn't hurt to be
informed. You never know when life can throw you a curve ball, and dementia is
a very curvy ball.
So,
there is my 'Top Five'. Please share them, add your own dementia-themed 'Top Five'
in the comments, and together we can help to make this year's Dementia Awareness
Week more informative for all.
You can follow me on Twitter: @bethyb1886
Thanks for this post Beth. I will share your Top Five.
ReplyDeleteThank you Paul
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