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Hi, I'm New here - Carers UK Forum

Hi, I'm New here

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Hi, New here, just joined today and have been unofficially caring for Mum since she has had several mini strokes and, after recent tests and scans, there was a,probable diagnosis of CADACIL, understand this is a rare stroke disorder but, apart from being told she needs to keep with her medication, I am rather in the dark about what this will entail as in will she deteriorate: she does forget words and things , specially when she's tired and suffers from Reynaulds, search circulation problem so Mom suffers times when she gets very cold.

I am living with Mom and though at times she has good days and not so good ones , love her very much and sad to see how much of her independence has been taken away and confidence has been ebbed. When she does have one of her "woozy" turns , am there to help her as much as can be but am nervous at going out far or long as would feel awful if anything happened while was out somewhere and she had a turn, fainted or such.

Go out for medical appointments with Mom or for myself (medication controlled diabetes) . Am doing the very best can with control /diet and shop in the village store but feel restricted where can go or what can do.

Just got the Carers UK info pack but overwhelmed and don't even know where to start. Please help , any info appreciated and best wishes .
Hi Sue, welcome to the forum. Have you asked Social Services for a Carers Assessment for you, and a Needs Assessment for mum? It's absolutely vital that you have regular time off from caring, which SSD should be able to help you plan, and possibly provide. Mum should be entitled to Attendance Allowance, and once that is claimed, you may be entitled to Carers Allowance. SSD should arrange a Lifeline so you CAN go out, safe in the knowledge that mum can call for help if there is a sudden emergency. How old are you both? Has mum had an occupational therapist to visit to look at aids and adaptations? It's so important that you have everything possible to help.
Hi and thank you for the welcome, help and advice you sent in your very helpful reply :) Is there a special number need to ring to get help/assessment from Social Services ? How would I go about actually registering as a carer?

To answer your question, Mom will be 79 in September and I'm 50 now. Have one brother who has a very busy job as a doctor and two children with partner and he tries to do his best to help specially at weekend's when not on call and Mom has friends in the village who come to visit her too.

Thank you again for your advice and at least don't feel so isolated just from joining the forum . Best wishes
Hi Sue
Look for 'Adult Social Services' on your local authority website for the number and while you are on it explore to see what their promises and policy is towards care for the elderly.
Also, click on the red 'Help and Advice' button at the top of this page and follow the grey links to information and explanations which may be of help to you.
Read that pack too.
If you are living with Mum, who owns the house? If she has to, eventually, move into a Nursing Home, the house will be counted as part of her assets if she does, and I'm not sure where you stand. It's worth looking into that. A doctor in the family is a handy thing to have as he may well be able to steer through any complications with NHS.
You go to Mum's GP surgery to fill in a card which lets them know that you are her carer.
One step at a time and you will get everything covered eventually. Keep posting and ask anything.
Elaine
The point about who owns where mum lives is, indeed, very important. Unfortunately, there are exemptions to the general rule that the house has to be sold, which Social Services may "accidentally forget"! I'm sure the Carers UK helpline will have full details.
Thank you so very much for your discussion forum post. You showed a lot of bravery and courage. Thank you for taking such good care of your mom. I know for a fact that being a caregiver is hard work. My mom has alzhiemer's disease and I help take care of her. The tips that I can give you to help you with the caregiver part are the following:
1. Take a deep breath: This is very important because as a caregiver, we all know that life gets busy and it is hard to have anytime to breath. So, please take the time and do some deep breathing.
2. Give yourself one hour a day for yourself: When your mom is sleeping or resting, that is your time to read a good book or take a nap yourself or just relax.
3. Do an internet search on services in the community: There are so many services in the community; families just need to find them. There are many resources in the community that help families a lot.

I hope this helps you.
Hi Sue,just a little thought here towards you filling out the carer's pack i am in the process of doing this also and felt daunted when i read through it all however i remembered the lovely guy who i actually seen at a place called the Carer's Association in my home town and he did say you will get this form and if you are stuck in anyway give me a ring and i will make an appointment for you to come down and help fill it in with you so that is what i did now i am so glad as it do's not seem so daunting now so if you have a place like that in your home town why not try to give a ring and no harm in just enquiring,hope this is of a little help to you take care :)
Thank you, everyone, for your valuable help and so glad to have joined. Do so appreciate all the help and information and will be checking it out and getting going . Mum owns the house so yes need to check that side of things too.
matteo_1508 wrote:Thank you so very much for your discussion forum post. You showed a lot of bravery and courage. Thank you for taking such good care of your mom. I know for a fact that being a caregiver is hard work. My mom has alzhiemer's disease and I help take care of her. The tips that I can give you to help you with the caregiver part are the following:
1. Take a deep breath: This is very important because as a caregiver, we all know that life gets busy and it is hard to have anytime to breath. So, please take the time and do some deep breathing.
2. Give yourself one hour a day for yourself: When your mom is sleeping or resting, that is your time to read a good book or take a nap yourself or just relax.
3. Do an internet search on services in the community: There are so many services in the community; families just need to find them. There are many resources in the community that help families a lot.

I hope this helps you.
Hi Matteo,

Thank you for the kind, caring advice you sent and words you posted. They help so much and as Mum goes to bed relatively early , after any household work has been done, can use that time in the evening for time out :)

Best wishes
Hi Sue
I know that the caring can get a bit much and like you I've just recently joined
All I can say is that when you can always try and chat with someone who is also a Carer maybe not dealing with the same issues as you but still able to chat
Andy