Hi. I’m new to this site. I’m a full timer carer to my older sister, who has very poor mobility and was recently diagnosed with dementia. She is 9 years older than me, but we’ve always been close. I’m on call for her 24/7. We live in the same house and have an intercom between our bedrooms, in case she needs help in the night. I’ve been managing all her care on my own, but am now finding it increasingly difficult due to the dementia symptoms. I’m getting counselling and finding it helpful, but feel so guilty when i lose patience with my sister. I’m hoping that this site will offer support and advice. Thanks so much for the forum.
Hi Janet and welcome to the forum.
First of all well done for being your sister’s ‘rock’.
Secondly, there comes a time in every carer’s journey when it starts to become too much. Dementia is a cruel thing and affects the family more than the sufferer. It cannot be managed by one person alone. Your sister has other problems too. You have to have help.
If there was a manual detailing every thing a carer can or should do to help themselves and their loved one, all the pitfalls, all the issues regarding NHS etc, it would be so thick we’d be intimidated just looking at the size of it.
So. one step at a time. Hopefully the forum members will help you through the ‘pages’.
If there was such a manual I would put on page 1 that no-one legally HAS to care for another adult. Not a spouse, adult child, sibling, relative, neighbour or friend. I am not advocating that you should desert your sister at all. Just reminding you of a ‘get out of jail’ card you might well choose never to use
because most carers choose to care. They are entitled to help but need to know how to get it, Often quite a fight. So many more things to consider too.
Have you anything in place at the moment? No point in telling you what to do if you have done it already. Have you had care assessments from Social Services for example?
Will you tell us how old you both are? Who owns the house you are living in, what benefits you are claiming (you are entitled) and what you are struggling with most? Do you have any help at the moment?
If your sister has been diagnosed with dementia the council tax can be reduced for example.
Remember we do not know you but are eager to help if we can. Taking one step at a time we will support you through this if you keep posting.
Welcome. I care for Mum with dementia and until recently my Dad with dementia like symptoms. I got lots of help when I was at breaking point 2 years ago. Hopefully we can help you too!.
Hi Janet … welcome to the forum ?
A kinship carer … sister caring for a sister.
Beyond what others will provide on the caring angle , another link which may be of use to you :
A thread designed to assisit kinship carers … slightly different when it comes to family caring.
I trust that there well maybe something of immediate interest in that thread for you.
Obligations in respect of support services are also slightly different !