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newbie - Carers UK Forum

newbie

Tell us a bit about yourself here.
Hi all, I'm new to this site, i'm 50 and my mom has dementia.
I find it very difficult to understand.
I have so many questions.
Hello Tina and welcome to the forum :)

Many of us here are caring for, or have cared for, someone with dementia so ask away. We have a lot of experience of this dreadful disease and may be able to answer your questions or give advice based on our own journey.

If your Mom has been newly diagnosed then a good source of information is the Alzheimer's Society's website:
https://www.alzheimers.org.uk/ (despite the name they cover all the different types of dementia, not just Alzheimer's).

We also have a section further down this forum Index dedicated to dementia; have a quick look through there as well.
Hello Tina
Welcome to the forum.
My husband is in a nursing home because of strokes and vascular dementia.
Dementia is a complex disease and very heartbreaking to see.
Please ask away, as this is a very supportive forum, non and you can vent as much as you want.
Hi Tina,
Welcome to the forum. There are lots of people here who are caring for someone with dementia.
Feel free to ask anything you like.
How much support are you giving mum at the moment?
Have you claimed Attendance Allowance for mum?
Has anyone told you that mum is probably entitled to Council Tax exemption? This can be backdated to the day of diagnosis!
If Mum has a Needs Assessment from Social Services, and you, a Carers Assessment, you will have the opportunity of finding out what is available in your area for mum, and what support there is for you. For example, in my area there are regular day trips and events for carers and their carees.
Hi Tina

I am a similar age and caring for my much older husband (78) whom I feel has some sort of dementia - he had significant brain atrophy 4 years ago. I agree the Talking Point ring is very good. What kind of dementia does your mother have? BB advice is very good and please get all the help you can now as sadly it is progressive. My only advice is to make time for yourself and your hobbies and put some kind of infrastructure in place now as things may get worse quite quickly. Do not be afraid to ask questions. There is a huge amount of support and help and compassion here and none of us will judge you. Tell us a little more about your circumstances - do you live with your mother?
Hi Tina
Welcome to the forum, I care for dad with Vascular Dementia and would completely agree with Susie- the Alzheimers Society are a fantastic source of knowledge and advice. Here is a link to their free downloads and factsheets
https://www.alzheimers.org.uk/info/2003 ... factsheets
Hello. I am 41 and my Mum has recently (last week) been diagnosed with dementia. Although we have suspected for some time something was wrong. It is so much to get your head around, isn't it? I spent the weekend looking at the Alzheimer's Society website which has some excellent fact sheets on it. I also really liked the blog posts from those caring for loved ones with the disease and from those suffering themselves.

The memory clinic who diagnosed my Mum have also been really helpful in helping us start to understand the illness. They have referred us to some support groups, which I am hoping will help her find ways to remain semi-independent for as long as she possible can.

It has been a horrible time, but in some ways the diagnosis has helped us move forward and get some practical things in place like Power of Attorney, an SOS alarm, key safe, apply for Attendance Allowance, apply for exemption from council tax and having a needs assessment done to get her some support in the home. Before we had a diagnosis we were all just struggling on whilst she denied there was a problem and we felt annoyed with her for being vague and forgetful.

I hope you can get the information and help you need. It is out there, but you often really have to look for it and this forum is amazing.
If you are self funded - useless as a chocolate teapot- they can tell you what you need and do zilch about any of it .
Welcome to the Forum, Tina. I cared for my mum with dementia from the age of around 40 (me, not my mum!). Whatever questions you have, fire away. We are not experts but between us, we probably know an answer of two.
Tina, you may find it helpful to think of dementia as a 'serial condition', as in, the different stages of the disease require quite different types of care.

To begin with, in early stages, the person is still 'pretty good', but there will be signs that they are 'different'.....for example, they are likely to become almost emotionally 'needy'....they need 'someone else' to be with them all the time, they can't entertain themselves any more - they 'regress' almost to being like a toddler. You can put them in front of the TV but they can't follow what is on, you can give them a magazine and they can just stare at it blankly. They can't read books any more. They can't 'do' anything useful any more, like make tea, or have a shower on their own. If you are doing anything else, they can't just watch you, they need you to stop doing what you are doing and pay attention to them, and 'entertain' them.

They seem as if they have become very 'selfish'. They aren't doing it deliberately ,but they are losing the mental ability to realise than anyone else exists, that you, for example, have things you may need to get on with, They will start to appear as if they are 'taking you for granted'....my MIL at this stage never ONCE ONCE ONCE EVER EVER EVER said 'thank you' to me - not for anything. For a while she could still say 'thank you' when I gave her a cup of tea, but she never noticed I was spending all my days looking after her. She lost 'the big picture'.

It took me a long time to realise this was not her being 'ungrateful' she just didn't notice any more. I used to get irritated as hell that she did less and less for herself - eg, called for me to make her evening gin and tonic, even though I'd left it all out for her.....but, again, this was because she was forgetting how to do it.

In a way, I think this stage is the most testing for carers, as they can 'seem' just 'old and a bit forgetful', but in fact it's much more than that, and some of the thigns that can seem so exasperating and, as I say, 'selfish' are simply because of the disease getting into their poor brains.

If you read some of the posts by people looking after someone with dementia you can see how it gets to them - one of our posters recently got upset/exasperated/angry because their partner with dementia, when she challenged him about whether HER being upset was upsetting to him, simply said 'Not really' and asked when dinner would be ready.

Now, that can seem like you'd want to yell and clock him one (!), but, of course, it isn't 'him' that is saying that - it is the dementia inside him. They lose the ability to feel for other people at all...

In a way, by the time they get 'really bad' it's obvious that they are 'not themselves' but in the early stages the symptoms can be 'exasperating' and 'upsetting' because they seem so callous and selfish and ungrateful. It isn't them, it's the dementia. Not their fault. But hard to cope with all the same.....