Providing constant supervision... exhaustion

[Lisa74]

Hello,

I'm in my twenties and have been looking after my Gran full-time for 2 years (since March 2012).

At first I fell ill so moved back with my parents (after a few years of living 300 miles away) but was accidentally landed with the job of caring for my Gran whose dementia was rapidly deteriorating (she had already been living with my parents and a dementia diagnosis for 5 years prior to this) and now 2 years later (apart from 3 months I spent in hospital) I am still stuck here.

Social services would charge an enormous amount to provide a tiny little bit of care (they proposed thousands that we don't have for 3 carer sessions a week) and as a family we don't even get away for a single night without my Gran, get out for meals/cinema trips or go on holiday and most of my old school friends are living away from this town now so I'm always here with her.

We don't have any financial resources for respite. The only time we had without caring responsibility last year was when my Grandad (other side of family) passed away and my uncle took her for the night. Really every single day is spent stuck here with my Gran and it's exhausting.

I am really struggling with a few things just now:

Toilet issues and underwear
My Gran soils her underwear a lot and needs help replacing them and then encouragement/cajoling/forcing to wash her hands afterwards. She has also had a prolapse of her back-passage so has needed continence pads and got poo on the floor and around the bathroom a lot recently. Every time I have to deal with it I feel really stressed out!

Constant questions and talking to dead people
In the past I didn't really mind listening to my Gran talk about her stories from the past. She would happily do it for 2-3 hours at a time, which was tiring but it made sense. Now she cannot really remember stories but instead is constantly asking about where she lives, where her parents are, when her friend (who passed away years ago) who "phoned her this morning" is coming, when she is supposed to leave for school, why the baby is upstairs. Why I am "keeping her hostage when she has to get back to her parents/baby"!

The problem is Granny needs near constant supervision I can't leave her if I get tired of the constant questioning after an hour or so. When my extended family visit they can't stand it for 10 minutes.

Escaping
Granny tries to leave the house several times a day to see her family and is always very angry if she cannot do so (e.g. threatening to break the glass in the front door).

I just needed to rant about it all. I am actually compassionate and kind to her but it's so exhausting!

Any advice or similar problems?

 

[jeany123]

If your gran has had a financial assessment they will not charge her more than she can afford for day centres, respite or home care,

also only your gran will pay it not you,

 

[Miss Merlot]

Another "accidental" carer of similar age to you here!! (I'm 32)

SS should not be charging you for care, and neither can you be "forced" into this position. If it is not her home, it is not your family's fees to pay (if she has her own home / savings they may have recourse to these).

With the wandering, aggression, incontinence, unsustainable burden on the family, it sounds high time for a care home, which you don't mention as an option in your post?

Surely your parents are feeling a similar strain...? What do they say on the subject?

 

[loveahug]

Hello Lisa

I'm not surprised you're exhausted, if you carry on like this you'll end up with carer breakdown and then there will be 2 people needing to be cared for! I'm going to keep it short:

1 You can't be forced to look after another adult, it's not your job, and you can give it up at any time.
2 You are entitled to a carer's assessment of your needs, have you had one?
3 If your gran can't pay for her own care then Social Services need to be involved to fund it. I'm sorry but thousands for 3 carer visits a week is incorrect, average at
£12-15 per hour.
4 Does she get attendance allowance, council tax discount. If you care for 35 hours per week or more you should claim carers allowance. The attendance allowance would pay for more than 3 care visits per week.
5 Investigate day centres to give you a break.
6 I agree with Miss Merlot, she really should be in care now.

So that's just for starters. There will be lots of others with useful advice, take a break and read through them and decide what you really want to do about it all.

Hugs x

 

[DawnB52]

Ask questions....

Hi Lisa,
Have just read your post and my heart goes out to you, in February I was in almost the same place your in, but it was/is my mum. I got to the end of my tether trying to be a one woman care system and started to make some calls, have you tried the carers helpline? I don't know where you are but there are quite a few volunteer services running nationwide aswell. Chin up