Who's dementia is it anyway?

It's been busy just recently, and it can be difficult to find the time to write, but the difficulty of telling someone they have a dementia, and the vital importance of having the right help and support with this essential conversation needs to be understood, and talked about!
If you don't know you have a dementia, you won't have a hope of understanding what is happening to you.  Your family who love you very much might think they want to spare you the pain and 'devastation' of a diagnosis.  As your dementia evolves, the symptoms increase, the fog thickens..........you will know something isn't right, you just won't know what it is.
A well meaning health professional might agree with your family, your carer, your partner. They might say 'Its better not to say at this stage'  The doctor, the nurse, the support worker, they might not quite know how to have 'that conversation'  Its tough.  Really tough.  Of course this is a situation I have encountered in my professional life, but how do I really know what families might think? After all, it's so easy to wax lyrical about having the right conversations at the right time when you have the safety net of being the 'professional' in the equation.
We, as a family, have never really talked to Gran properly about her diagnosis - it came for her at 95 - she had been living with the presence of the symptoms of Alzheimer's disease for around two years before this.  She had watched my Grandpa rage against the thunder of his vascular dementia.  My family like so many others just wanted to spare her the pain.
Gran often asks me, 'Am I going mad?' She says 'I don't know what's happening' - I hold her hand, reassure her, tell her she is ok, and we are all here.  I find it incredibly tough to speak frankly with her about 'dementia'  - when the word can trigger such powerful emotions.  I am more comfortable accepting her reality than perhaps other family members are - I know when to gently validate, when to simply just join her in her quiet world, not to challenge the things she says.  What we as family needed, just as much as anyone else- was a health professional or supporter, such as an admiral nurse to guide us.  I might be a dementia nurse, but I also love my gran - that makes it hard be the health professional for her, or my family.
What would they do?  We could have been supported with planning and having that essential conversation.  We could have explored and then come to understand why it felt so difficult, and come to a point where we COULD sit with gran and really talk to her.  A way to reach her in the lonely place Alzheimer's dementia has taken her to.
A person with dementia, speaking publicly at the Dementia Congress last month puts this issue into a very important perspective - 'We might not want dementia, but its OURS, not yours (health professionals) or our families - It's OURS so we need to know' We as health and social care professionals - advocating for and supporting people with dementia -need to really understand the importance of our role in this part of the dementia journey.
Having that essential conversation at the right time, and carers having access to the right people to help them - we can be better at empowering the ;person with dementia right from the start.

Who's home is it anyway?

So, here we are, Sunday evening.  I'm just looking at the diary for next week - It's a day on the 'shop floor' tomorrow - my favourite sort of day.  I get to be with people, families, carers, and it feels like that matters.  Later in the week its a focus on educating.  You might know I'm something of a fanatic about the power of education - It's a real way of changing the face of dementia care.  If we empower carers,nurses, hospital staff,support workers - whoever you are - understanding something about dementia will help you.  I;m not talking about understanding the relationship between plaques and tangles - I think we should all feel a little better equipped to know what to say to a person with dementia who reaches out to you for comfort.  If we understand better the ways a person might do this, or how to just take a moment before we respond, or to feel we can just 'go with the flow' - that is the power education can hold for us.

I want to say something about what happens when someone with dementia moves into a care home.  My gran moved into a care home in August.  She left her home where she had been for almost 40 years.  She can't really remember falling for the 4th time and needing surgery to repair her fractured hip, she dosen't recall phoning for help sometimes more than 25 times in a day because she was scared.  What she does recall is feeling like her HOME has been taken from underneath her - that safe warm feeling only your own home can bring you.  Gone.  Her heartbreak goes on.  Today, she said quite simply 'I want to go home, I miss my home'  All I could do was comfort her, reassure her, tell her that we will do everything we can to make *****feel like home.

It's the same for many people living with a dementia, their carers, their loved ones.  That decision to move out of a loved and cherished home, into the unknown of a care home.  The decision hastened by a crisis, a hospital admission, the progression of a dementia to take a person's decision making capacity away.  Whatever takes you to that decision, it can tear you to pieces.  It can make others judge you, it can make you wonder constantly if it was the right thing.

The care home...why doesen't it feel like home?  It dosen't belong to you that's why.  It belongs to the proprietor, the provider, the company etc.  The best care homes are those that grow a sense of community, a sense of belonging for each individual.  In such a place, you have a chance of feeling like you are truly at home.  For care home staff, feeling a sense that it is HOME for people they care for, and really respecting that is critical.

For us as health professionals and nurses, we need to understand what a wrench leaving your own home can be, and what a totally gut wrenching decision it can be.  I've heard many many times in thousands of handovers as a nurse 'Mrs bloggs, fall, etc etc, for nursing home placement'  Saying it like that - it sounds insignificant - just another fact about that person.

We should all remember the individual impact of moving from own home to care home, and think carefully about how we are going to support the people we look after through that transition.  We should also remember that this change is a lasting one.  For gran, her sadness is still real, it still hasn't eased.  That's what rips my heart out as a grand daughter.  As a nurse, it makes me understand the absolute need for unconditional support, empathy, and knowledgeable health professionals who really understand......

'Dementia is everyone's business'

Lucy

How do you sleep at night?

Well, I have taken the plunge into the whirlpool that is blogging!!  I've been meaning to for quite some time, but have struggled to find the right moment.  I am also conscious that there are already some EXCELLENT dementia blogs out there, and I certainly don't want to muddy the water with mediocrity.
So, what to write?, I ask myself. Who knows if there's anyone out there who will want to read my dementia nursey ramblings!! In case there is someone (you never know), I decided its time to start writing.

Dementia has an ability to hit you like a football in the face, it takes people to places that they really don't want to go.  We still live in a society where too often a person with dementia is just that - a person with dementia.  It still feels as though everyone else thinks life stops - work stops, socializing stops, the variety and vibrancy of life stops.  I do believe this is slowly changing, you can see this if you look in the right places, but the change needs to pick up pace!!

At the Dementia Congress in Nottingham last week (more on that to come), we heard from a man, a doctor, a husband, a dad, general enjoyer of life!  It was quite literally a case of diagnosis on a Friday, and by Monday he is revoking his licence to practice with the GMC - In a weekend, dementia came, the inevitable after months of worry, and made its presence felt with all its might.  If there was ever a way to make explicit the impact of a dementia diagnosis, this brave man made us all think very long and hard.

I was asked today 'What's in your job that stops you from sleeping at night?'  A tough question, and I thought about it for a little while before I answered.  Then I realized, the answer was actually simple......
I replied 'Dementia'

The blogging adventure starts here!!