Hi,
Welcome to TP, this is an amazingly helpful place and has been a real life saver at times for me and the advice from folk here has helped me in so many ways.
Dad has Early Onset Multi-Infarct Vascular Dementia. He was diagnosed in 2008 after being incorrectly prescribed drugs for arthritis which caused mini strokes and we had to fight tooth and nail to get the Doc (same one who prescribed the wrong drug) to refer him for tests. In the end Mum paid for Dad to have a brain scan which showed up what had happened and the Consultant immediately transferred him onto his NHS list.
Mum cared for Dad at home until he had two hip breaks at the end of 2011. Since then it has been even more of a nightmare, but that's a whole other story
Looking back, Mum now says that she should have accepted the help that was offered i.e go to carers meetings, have Dad go to a day centre etc because when he was still at home she would get so frustrated with him and at times very angry and bitter about the fact that this disease was robbing her, and them as a couple, of their life.
Now she would give anything to still have him at home but at the time she often used to get quite snappy and have a go at Dad when he couldn't do something or if he asked her for the umpteenth time about the same thing etc. She also got very unpleasant and bitter towards me (never my brother, again that's a whole other story
) and my husband and regularly told me with delight how she had had a go at people she bumped into who knew Dad was ill but hadn't phoned her to ask after him (usually distant family members).
Fact is, Mum coped extraordinarily well with the practical stuff, Dad was always looked after, well fed and comfortable. However, she as his primary carer clearly needed emotional support but that wasn't available in our area unless she went to a group or had Dad put into respite (no way would she do that, she point blank refused). Mum would not 'allow' us to sit with Dad to give her a break, the only time she would let that happen is if she had to go for an appointment herself. Mum doesn't use the Internet either so apart from their CPN and us when she would let us, she had very little support and the system was happy to let her get on with it.
Everyone has different needs and coping abilities but the one thing that shines through from almost everyone who is a carer is that you need some time for yourself, even if it's only an hour to wander aimlessly around the shops. That hour can make all the difference, I just wish my Mum has listened and accepted that she needed to have a break.....maybe now she wouldn't feel the way she does as she keeps beating herself up about all the times she lost her temper with Dad.
X