Saturday 14 June 2014

Carer's questions - Is this normal?

Welcome to the sixth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."

For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 

Day 6 - Is this normal?

As a carer with no medical background whatsoever, I found that one of the biggest challenges in caring for my dad was understanding what was happening to him during his dementia. I suspect that anyone who is caring for a person with complex cognitive problems is destined in some regard to struggle – even professionals can find it hugely difficult. In fact, taking that into account just imagine what it's like to actually be the person LIVING with dementia.

When you are a carer and your loved one cannot communicate easily or respond to you in ways you expect, finding an understanding between you both can be a steep learning curve. I managed to find other techniques beyond traditional speech to communicate with my dad (read my blog about expression), and in fine-tuning those it has hopefully made me a far more intuitive person. Finding the subtleties, sensitivities and sometimes tiny movements that indicate the communication of a particular message from your loved one isn’t easy though.

Whenever you are going through a rough patch, and encountering actions or situations that you find difficult to cope with, it’s inevitable to wonder if they are ‘normal’. Defining normal is almost impossible, since one person’s normal is another person’s abnormal (or indeed somewhere in between). Over time you do get a sense of what is your loved one’s normal, but that takes patience and involves trial and error.

No person is a behaviour, and whatever you are going through with your loved one underneath those immediate concerns is still the person. It’s easy to lose sight of that sometimes, and indeed overly stress about changes that we don’t consider ‘normal’. Trust your instincts; if you feel something is wrong seek help, but at the same time consider what you are really experiencing – the progression of dementia is such that either temporary or permanent changes in a person may be within what is their ‘new’ normal.

D4Dementia blog posts that I frequently signpost dementia carers to:

Communication: 'Talking the talk'

Aggression: 'Understanding aggression'

Swearing: 'Turning the air blue'

Disorientation/confusion/frustration/paranoia: 'Day-to-day with dementia'

Hallucinations: 'Another world'
Further reading:

D4Dementia: 'Caring for carers'

External links: 
Dementia Action Alliance Carers' Call to Action:

Carers Trust:

Next post on 15 June 2014.
Until then...

Beth x

You can follow me on Twitter: @bethyb1886

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