New girl on the block!

Hello,
I’m a carer to an elderly gentleman whom I have known for 18 years. He is very quiet and kind, but has developed Frontal Lobe Dementia, diagnosed by a scan. This means that he has little or no initiative to do anything, can’t cope with day to day living without support, and is fairly unaware of his condition. Added to this he is incredibly slow at everything, and shuffles as he walks, rather like Parkinson’s. He eats very slowly and often spills; his speech is becoming very unclear and his thought processes are often slightly odd. He has a good memory and knows what is happening day-to-day. I visit him nearly every day, cook for him , organise shopping, clean, and take him out and about, organising his exercise classes and other social activities. I am like a mother to a young child.
I become very irritable sometimes and resent my input, as he has never showed me commitment or wanted to become my full-time partner.I feel trapped in a situation of loyalty and responsibility, but do not feel real love for him. He conversely is like a loyal dog and becomes more needy of me the more I draw away.
I live alone in a council bungalow and am on benefits, which does nothing for my self esteem. ! have started going to a carers group, and try to look after myself physically. I recently had some counselling. I discovered this website and am about to start some home study programs to try and make something positive of my role of carer. My previous work has always been around people ; nursing, midwifery and therapy as well as elderly care. But I’m now retired and feel I need more Me time too!
One of the problems I encounter is that many people know all about Alzheimer’s but don’t know how stressful frontal lobe atrophy can be! It is little known out of all the different dementias. If anyone knows about it, do get in touch please.

Hi Angela,

Welcome to the forum.

You have NO responsibility for this man, who really does sound like he’s been taking advantage of you, although by now he doesn’t realise what a responsibility he has become. You need to withdraw from the situation, or it will take over your life completely, if it hasn’t already.

So much is available to people in his situation. Does he have any family at all? Someone other than you needs to take control of the situation.

As he is living alone with dementia, he was exempt from Council Tax since the day of diagnosis.
He should also be entitled to Attendance Allowance, which would qualify you for Carers Allowance.
He should have a Needs Assessment from Social Services, and you should have a Carers Assessment.

Hi Angela

Have you looked at the Alzheimers Forum “Talking Point”
There are a lot of discussions about other kinds of dementia including Frontal Lobe. I just put in “Frontal lobe” into search

https://forum.alzheimers.org.uk/search/15132985/?q=frontal+lobe&o=date

but you could try some other combinations for more results

Even better - have you seen this link with fact sheets from Alz Soc

This is a strange sort of relationship, isn’t it? I appreciate that his mental faculties are failing now, but you’ve been involved with him for a long long time - may I ask if HE has ever thought of himself as ‘in a relationship’ with you?

In other words, has he accepted your involvement as not just ‘impersonal care’ (ie, that could have been done by ‘anyone’) but as PERSONAL care - ie, something you’d only provide if you were personally (ie, emotionally) involved.

I think, sadly, that as his mind is now failing, that whatever ‘might have been’ is effectively ‘no more’ and that more and more he will be ‘fading’ from you. In a way, you know, given the grim fate that awaits him, perhaps it is as well that you are considering ‘ending the relationship’ (ie, the ‘partnership’) (as oppose to the ‘employment’ so to speak of you being a carer).

(A divorced friend of mine, who was ‘dumped’ by her husband, went off and had a brilliant ‘fling’ with a man much older than her middle age, and he basically ‘lavished’ his time and attention on her etc, etc,…but she decided to call it time…and JUST in time too…she heard he was getting ill and so on, and to be honest, ruthless as it sounds, I’ve told her that she got out ‘just in time’!) (Yes, sounds ruthless, I know, but she’d have ended up being his ‘long time carer’ as he faded towards eventual death, and then shed have been facing her own ‘old age’ having ‘wasted’ these ‘last middle years’ so to speakl)

I agree that you need to identify in your case if there are children/ relatives for this man, and most definitely to get SS/GP involved, for needs assessemnts etc etc etc.

Very sadly, if dementia is now setting in, it is likely that he will need, at some point, to go into residential care. it becomes almost impossible for someone with ‘deep dementia’ to live at home, certainly if there is only one person to look after him. 24x7 care is just not on - not when someone is bedbound and doubly incontinent (as, grimly, will happen with dementia).

So, yes, maybe your relationship with him, has, finally, run out of road???

(If he does go into a care home, of course you can still visit and be ‘friends’)