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[Janet Mayes]

Hi, I care for my adult daughter, who is now 29. When she was growing up, I was also working full time as a teacher, but once she reached to end of her education I saw no good alternative to becoming a full time parent carer. My daughter has quadriplegic cerebral palsy, which means she is totally dependent for all her practical needs: she can’t weight bear, so she needs hoist transfers, and she has no independent hand function, so she needs to be fed and supported with activities. She’s also profoundly deaf, and understands mainly through BSL, though she can’t sign herself. She makes good use of assistive technology: she uses an electronic communication aid controlled by a voice activated switch as her public voice, though I can more or less understand her speech, and uses the same switch to control a computer, so she can do lots of things independently online. She loves art and craft activities, makes short films and animations, and interacts with friends on social media; in normal times she enjoys going out, socialising and travelling. She normally has some support with personal care and activities through direct payments, with a mixture of directly employed PAs and agency carers, and goes to a centre twice a week, but I provide all the evening, overnight and weekend care as well as some in the daytime. Because she’s at very high risk from corona virus, we’ve chosen not to have carers coming into our home since March, and are still shielding. This means I’ve been providing all her care, support and physio (with my husband cooking for us), which has kept us safe but is obviously very hard work. I would be interested to know of other parent carers, especially people supporting younger adults; in particular, I’m very concerned that we have no plans for her future care once I am no longer there to organise it.

[Abbie Quinnell]

Hi Janet,

Thank you for your post!
I have spoken to you recently in regards to your caring role and support around COVID. I also know how tough it has been for you and your Husband to be supporting you Daughter on your own.
I have just looked on the system and I can’t see that you have registered for a Kent Carers’ Emergency Card. This is a card that you would carry around with you at all times, so if something were to happen to you in an emergency, then emergency services are able to alert next of kin about your absence from the caring role. I can always get one of these forms sent out for you if you are interested.
Also, for further plans for your Daughter, you can always speak to Social Services about the future and what support she would need, you can call them on 03000 41 61 61.

I hope that this has helped and I hope that other Carers’ are able to contribute to help you as well.

Kind regards,

Abbie.

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