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New to being a carer - Carers UK Forum

New to being a carer

Tell us a bit about yourself here.
Hi.

My husband was diagnosed with FTD about 18 months ago and I have struggled on my own as he is not bad enough to get any help at all and is in total denial.
If you met him you would see nothing wrong, but behind closed doors its very different with the mood swings, memory loss, hoarding and general personality change.
I am alone and isolated with as all the groups cater for the sufferer as well as the carer, but he does not display any signs and what I need is something just for me, to help me cope with the living bereavement not having any control on our lives due to him still functioning as in his mind normal.
I have forgotten how to sleep and am heading for total meltdown.

Whoever reads this thank you
Welcome to the fourm.

FTD? - Frontal Temporal Dementia?

How old is your husband? This will affect the help available.
What benefits are being claimed?
Have you sorted out Power of Attorney?
Exemption from Council Tax on the grounds of "severe mental impairment?
Frontotemporal dementia ... for other readers , over to the Alzheimers Society :

https://www.alzheimers.org.uk/about-dem ... l-dementia

Frontotemporal dementia (FTD) covers a wide range of different conditions. It is sometimes called Pick’s disease or frontal lobe dementia. This page explains what FTD is, its symptoms, and who gets it. It also describes how it is diagnosed and the treatment and support that is available.

The word ‘frontotemporal’ refers to the lobes of the brain that are damaged in this type of dementia. The frontal lobes of the brain, found behind the forehead, deal with behaviour, problem-solving, planning and the control of emotions. An area of usually the left frontal lobe also controls speech.

The temporal lobes – on either side of the brain – have several roles. The left temporal lobe usually deals with the meaning of words and the names of objects. The right temporal lobe is usually involved in recognising faces and familiar objects.


Needless to add ... UK wise ... the Alzheimers Society offers help and advice on this condition.

We , on this forum , can help with the caring aspects ... as mentioned by BB ... and ... there will be a few !
Hello Bernice i read your post and had to reply
i know how very hard it is on a daily basis i have been a carer for my 85 year old mother who has
had vascular dementia for over 10 years after suffering a stroke in 2005 my mother has been a window for 40
years so i have allways looked after her since i was 16 when my father died
and i know how very isolated it can be i do get very down at times as you must get
but there is a fantastic surpport network out there to help you
should you need it
i hope i have been of some help to you
you take care now
kind regards martin.
Hello Bernice, welcome to the forum.

I care for my wife, who has mixed dementia, and fully understand the behaviour you describe, which is known as 'Host' mode. Adopting these periods of 'normal'(whatever that is!) behaviour takes a lot of effort on the part of a person with dementia so they can't maintain it and are frequently tired after the event. This tiredness makes the dementia worse and so the carers get the brunt of that and the frustration that comes with it. I experience the same.

Host mode is just the person trying to put on a brave face so it's well intended and they won't realise the frustration that is caused to the carer. We have to give them a 'by ball' and accept it.

I just started posting a couple of days ago but intend to be around the dementia section of the forum quite a lot from now on so feel free to ask questions or just have a rant/vent as I will try to help when I can. I guess we're all here to help each other. :)

Don't be afraid to talk to your GP about how things are as some of them can be good - mine has been useful in recent weeks.
Thank you for the advice, I suppose I just need to find a way to cope as I know I am one of many but it makes it no easier
Your welcome.

The Alzheimers Society ... time to explore their services ?