I have never written In a forum before but I am so stressed I am wondering if there is anyone in a similar situation.
I am 74 years of age and caring for my chronically ill daughter, 2 grandchildren and a husband
My daughter spends her life at the moment in severe pain and there seems very little that anyone is able to help her she has many drug and chemical sensitivities so is unable to take most of pain killers that are available. My granddaughters are 12 and10 years so need me to care for them. My husband although mobile has many health issues. We moved in with our daughter family to enable me to care for them all. I am worn out and stressed there seems to be no help for any of us. I am finding sleep and rest extremely difficult as I am constantly on the go and woken up at night when she is in severe pain.
Can anyone give me any advice, is there anyone out there who cares for their 40 plus daughter I feel desperate and do not know where to turn.
Hi Maggie, welcome to the forum, you are not alone. There are a. Few people on here will help you with advice on your matter. You can contact the carers helpline for further information and advice if you want to go into depth about it. @Melly1, @Charlesh47 would say the same thing.
All the best.
Welcome to the forum, that’s all too much for you.
What would help you most of all?
Have you had a Carers Assessment?Are the girls getting help as Young Carers? I know in Hampshire they do various activities.
Thank you yes I have had a carers assessment, as far as the children are concerned they are deemed at present not to be young carers as I do all the caring.Some of my problem is that I am on the border between England and Wales I live nearer to all that is on offer on the Welsh side but as I live in England I can only access the English facilities which are too far for me to travel. At times I feel so isolated, and do wonder how much longer I will be able to cope and there is no one to take over.
My son lives right on the boundary between Hampshire and Dorset and it has caused really stupid problems. It was OK for a social worker t drive over 40 miles to the other end of Hampshire but not to drive a few miles over the border!
@Maggie167
Goodness, that is a HUGE caring load you carry at a time of life when you should be taking it more easy.
As your daughter cannot take many meds has she tried various alternative/complimentary therapies? If her pain was better managed she’d be able to take on more of the parenting. She may be able to get access to some via the GP or pain clinic.
Are the granddaughters’ school(s) aware of the situation - they may be able to refer the girls / your family for extra support - a mentor/ befriender to do activities with them; after school clubs, play schemes etc They might not be doing the hands on caring but they are still affected by their Mum’s condition.
Have your husband and daughter had Need assessments? Are they getting any outside support from care workers/ other professionals, to take sone of the pressure of you?
Also, how are you managing for money? Is your daughter claiming PIP and universal credit and your husband Attendance Allowance?
Could you spend some of the benefits on a cleaner for example.
Do you manage to escape the house/ have a relaxing bath / take time out / meet a friend for coffee etc at all?
Do you still have your own home elsewhere?
What is the cause of your daughter’s pain?
I have severe arthritis, only one kidney, so also have to avoid some good pain relief, but have found other non medical things that help.
Does she have a really comfortable rise and recline chair?
Hi Maggie, I’m very sorry to hear how difficult and stressful your situation is at the moment. I hope you know that you’re not alone. I just wanted to add to the very helpful suggestions others have made to offer some support.
First of all, this is a really useful guide that summarises all the various types of support you’re entitled to including benefits and ways to get extra forms of practical help: Looking after someone guide | Carers UK.
I know your time must be very precious, but if you want to and can, you could come along to a Care for a Cuppa - it’s just a chat online with other carers and it might help to share what you’re going through or you could just come along and listen - either way, you are very welcome: Online meetups | Carers UK.
There are also some good tips here to help you look after yourself too - it’s really important you don’t neglect your own health though it’s so easy to: Looking after yourself | Carers UK.
Finally, the helpline email service is very useful for getting specialist info and knowing where to go for support: advice@carersuk.org
I hope some of this helps… please take care of yourself and know we are here for you.