Awareness,  Dementia,  Family,  Personal

Its our dementia world.

Caring for someone with dementia has made me realise there are two different worlds within this journey;

  • The Dementia sufferers world.
  • Their lucid real world.

Dementia interacts…

Occasionally these worlds interact with one another and these are the good, simple and fairly easy days. Then there are the days where the only world that nans knows is the dementia world and this can be difficult and frustrating on my part. I don’t mean for it to be. However,  repeating myself 20 times in the space of an hour without losing my rag takes a lot of patience building and has actually been developed through lots of practise.

“What is for tea?”

“Many people about town?”

“What are you having for tea”

“Many people about town?”

My biggest bug bare is that people outside of the family seem to think that they know best for Nan in their once a week or once a fortnight visits. When all they see is a snapshot of life. They take Nan as she is, which is fine but they believe every single word that comes out of her mouth. Even if it is;

“No-one visits”

“I like being alone”

“There is no food in the house I like”

The reality…

Nan doesn’t like being alone, but I can see why in the moment she might say she likes being alone. She does like a little bit of peace and quiet like the rest of us. However, that does not mean SHE WANTS TO LIVE ALONE. She told someone last week that she likes to be alone and they told her that my uncle should move out then. I mean, yes OK lets have an 88 year old lady with dementia live alone. This is despite the fact my uncle provides company each evening, makes food for my Nan and is there for support where needed. All because Nan said in that single moment of time she likes to be alone.

Believing the no-one visits comment is really REALLY infuriating because I visit daily, sometimes twice daily and my uncle lives with Nan and these people know this so I don’t understand why they go stick their beak in where it is not wanted.

Listen to Nan…

I understand that you have to listen to what Nan has to say and believe it to some extent. This is not in the context where you start to believe bad on the carers. Maybe I am conscious because of my mental health issues and it increases my anxiety. However, it really does frustrate me that interfering in things that it isn’t their place too. They can visit Nan, they can be her friend but that is where things stop because their interfering can have an impact on Nans well-being. Just last week someone came and put ideas in Nans head about house security (locked windows etc, something quite obvious that we check ourselves) and I spent the afternoon before Nans birthday trying to reassure Nan that she was totally safe. Something Nan shouldn’t have to worry about.

Nan cant see the bad in anyone really, and I am not saying that anyone who visits her are bad people but I don’t fully trust the way they go about things, this is because they don’t understand Nans dementia in the way I do. How can they? Do they see it all? No.. I do.

I guess the point of this post, because I feel that in a way it lost a bit of its context in my ramble. The carers for someone with dementia probably have the best idea of what will help the person they care for. They are the ones that clean up the mess daily, control the mood swings, enjoy the good times and cope with the bad times, all of the time. This isn’t just a once a month visit for them.

To conclude…

Dementia is hard and it doesn’t need to be made harder by interfering busy bodies.

That is all.

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