So this is something I’ve been thinking about a long time. Ever since I started caring, and became aware of what dementia really is and means I have been getting more and more wound up about the misconceptions I have encountered. So I asked around, and found I was not alone. And sadly, we rarely seem to argue or fight the people who are misconceptioning (yep, made up words. Just because I can).
I get so cross because sometimes I do argue back, but I’m thinking why should I have to justify myself? It’s most likely none of these people’s business. I should just tell them to get lost. But no, their judgements and wrong ideas sit and rot in my brain. Which doesn’t help towards having a stable state of mind!
So what are some of the misconceptions that are encountered by (young) carers, people with dementia, families of those with dementia?
- We found that people are being judged for how long they spend on their laptop. This makes me cross as Twitter is essentially my support network. I wouldn’t be without them as they understand what I’m going through. So I can understand why so many of us feel physical/emotional attachments to our personal internet devices. It’s our lifeline! The people on Twitter are always there for me, and I want to be there for them. That’s part of why we get on so well because we stick by each other and never judge. if you want someone you can garuntee someone will be around to give advice, pick you up or make you laugh. I like knowing im a part of that and im not the sort of person who needs the help then buggers off.
- I struggle when people seem to think that I should be coping better because it’s only my nan. I haven’t known her as long as say a life partner or parent and so can’t be as attached. I try not to swear in this blog but you know what? Just fuck off. I shouldn’t have to explain my bond and closeness with my grandparents, and I shouldn’t be made to feel that this is somehow inferior.
- Being judged for not putting a relative on medication – against said relatives choice. That because there is much press about the miracle results, everyone should be put on medication. I think though if the individual, family and doctor agree that it would not be beneficial that we should not be having to explain. The misconception seems to be that if medicine works for one it will work for another, but of course we all know that’s NOT true!.
- I keep experiencing people treating me like a child, like I can’t do proper care because she’s only my nan and so I can’t be suffering as much as if it was someone I had known for 50 years. Like I have it so easy and caring for nan is some cushy life I’ve chosen because I don’t have to pay rent and if I want to stay in my pajamas I can, because I chose to care for nan I don’t have a right to complain about because I knew what I was doing. I have these feelings deep down anyway and I don’t need people dragging them up to the surface. I know nan is easier to care for than others. I’m lucky she sleeps in to 8 when other people are up all night, or have to be up at god knows what time of morning for work. But I am constantly thinking of nan and her welfare from 8 till 11 and I’m still thinking and worrying when I sleep. If I hear any sort of noise, I am up. So when I have time away, yes I sleep until 10 am, but it is worry free sleep and I feel like i need it.
- It makes me so cross when people act like some sort of expert when I have studied it (briefly), worked with it, cared for and lived with the by-effects of it, write about it, talk to people who care for and experience it first hand, and I KNOW i am hardly scraping the surface with my knowledge!
- The people that think there is just one sort of dementia and that those with it are selective about what they remember
- Companies who have a telephone script and despite explaining your mum has dementia they still fire twenty questions at her.
- Care company carers who are paid to come in and cook a meal and ask the client if shes eaten then leave without checking, she has dementia she doesnt remember !!!
- Mainly that people with dementia don’t matter as they cannot remember anything anyway. Despicable!
So anything to add? Any misconceptions or judgements you’ve had to listen to? How did you react? How would you have liked to react?