Carers Week 2021: Sarah’s story

Sarah’s story

Here, Sarah shares some of her story about caring for her young adult daughter who is diagnosed with Autism Spectrum Disorder.

Tell us about the person who you care for. How old are they? What sort of things do they need help/care with?

I care for my daughter who is now 20 , she needs help with daily social/ living skills. She has Autism Spectrum Disorder (late diagnosis 3 years ago), and has had a huge mental health crisis during the Covid-19 pandemic which resulted in her having to be hospitalised. She has had the most horrendous year and has been traumatised because of it (as have we her family) .
As a result, she now needs help on a daily basis. Her daily needs include: Daily living & independence skills, needing to be heard in a trusted relationship, feeling safe enough to show her need and managing new and different situations (which is very hard for her). She is building trust in her PAs and has other key supports in her church, family and a small number of trusted professionals.
She is an amazing, funny, intelligent person who is working very hard to understand herself and manage life. I am very proud of her journey.

How much of your time each day/week do you spend caring for your family member?

Currently, we are provided 25 hrs of care per week (2-1) and apart from times when she is in appointments, I am her sole carer and am available 24/7 the rest of the time. Sometimes she needs me in the night as she still gets recurring dreams of her time this past year when she stayed in a mental health hospital avoidance unit. Now at home, we can only have care at the times when the agency are able to provide staffing- not always at times when we need it.

Do you ever get a break from caring? If so, what sort of things do you like to do when you have a break?

Currently, even though we have scheduled care in the family home, I often still need to be available for crisis support.
When it’s a good day, I love to meet friends, go out for meals, do craft etc.
I would love to see family and friends that live at a distance. I love to go to church and volunteer to do activities.
When things open up more theatre is great to visit.

If you could have better support as a family carer, what sort of things would make life easier for you and your family?

As a carer I have had to tackle a wide variety of issues by personal research and enquiry. It has felt that on each occasion I have had to gain skills in unfamiliar areas when there should be information available.

For example : education (EHC) tribunal, legal action, safeguarding, mental health, social care, etc.
It would be helpful if there was a source for all these challenges in one place so you don’t feel like you’re alone and reinventing the wheel each time. Peer to peer advice would also be helpful.
Professional help seems there for the client but the carer may be traumatised, in need of support eg counselling etc , and are expected to continue until breakdown. Carer hubs seem to deal with a limited range of basic support. Independent support for carers in the form of a budget for counselling/ advice, etc would help prevent breakdown of care in the home.

How Imagineer have been involved to support Sarah and her daughter:

  • Imagineer have provided Advocacy and Support Brokerage to help Sarah’s daughter to understand her choices about her support and to have her voice heard in planning meetings with Health and Social Care professionals
  • Exploring options for Sarah and her daughter to self-direct their support using a Personal Budget rather than relying on a commissioned care agency service
  • Researching options for housing, support and college courses
  • Helping Sarah’s daughter to understand and exercise her rights and entitlements to support

At Imagineer, we work alongside unpaid family carers in many different ways; but one of the key ways that we can assist is by providing Support Brokerage.

If you are interested in receiving assistance from one of our Support Brokers, please contact us: info@imagineer.org.uk to request a call-back for an informal discussion, or a referral form.

For more information about Carers Week 2021, visit: Carersweek.org

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