To coincide with Carers Week 2017, Christine shares her experience of caring for her son Mark (38 years) after an unexpected and tragic turn of events. But access to a personal health budget has meant he can live independently at home, dramatically transforming Mark’s health and wellbeing and Christine’s experience as his carer.
Like many people in my situation, my life changed overnight when my son was assaulted five years ago. It soon became clear that he was left severely brain damaged and would never walk or talk again and would to be highly dependent on others to live day-to-day and manage his ongoing critical health needs.
I would say that my journey as a carer started from that first day.
I was working as a youth worker at the time, so knew how the social care system worked and had some understanding about social care in my area. But nothing really prepared me for the emotional roller coaster that lay ahead.
After a nearly a year in rehabilitation, the hospital staff started to talk about Mark’s long term care and where he might go. There were not many options available and I felt that I wasn’t being listened to by anyone.
To start with, I was very frustrated about why we had been placed in this situation, angry at the medical profession for not helping us more and upset about the pressure it was placing on my family, and of course, angry that my son was unwell and suffering. I had no idea where to start. I then began to investigate what Mark’s options were and that’s when we received really good help from two key voluntary organisations – ‘My Life’ and ‘People Hub’, which helped me to navigate the available options.
Over time, I also started to realise that I needed to start to stop fighting the system and become better informed and build stronger relationships with my community nurses, GPs, health workers, community support groups and other voluntary organisations.
Eventually, after Mark had stints in a care home and then back at home using home-care agency, it became clear that we needed a more personal approach. I then found out we could become an employer. I decided to explore employing our own personal health assistance using Mark’s allocated personal health budget. This has been the best option for Mark as we can manage his long term needs while he lives independently at home. I care for Mark on a daily basis but as a family we’re all involved in managing his affairs. We have a team of eight personal assistants who help provide round-the-clock care for him, of which his sister Michelle manages the day-to-day side of their employment.
Now I’m not saying having Mark living independently at home has been smooth sailing. It has been a major change and adjustment for the rest of my family, but the outcomes for Mark couldn’t have been better.
He is brighter and healthier and has less acute medical issues as his personal assistants quickly spot issues before they reach a critical stage. But more importantly he is happier and more engaged with the outside world, going to concerts and the comedy club, as well as meeting up with friends and has even has a season ticket for his favourite football club, Manchester City. So he has a wonderful life.
One of the key benefits of being able to employ the personal assistants has meant that it has allowed me to re-establish my relationship with Mark. I have become his mum again. I can also look after myself better and keep healthy and now have time to connect with friends and family. But better still, Mark is part of our family and a loving uncle to his nephew Sofian, and we are all a close family unit again.
So what would be my advice to someone who finds themselves in a similar position to me?
- Take it slowly.
- Do your homework.
- Think about your options.
- Talk to as many people as you can.
Find out as much information as you can about the help and support you can access, especially on a local and regional level.
Work out what your options are and what will work best for you and your loved one, and don’t be afraid to try new approaches.
Find someone who listens to you and understands what you’re going through and join as many support groups as you can, as they are a great way to tap into what is happening locally.
Acknowledge that you are going through a difficult and emotionally fraught situation and that there is no easy way out except by taking one step at a time.
Keep healthy and look after yourself as you can’t look after your loved one unless you are healthy yourself.
And finally, just remember that it won’t be like this for ever!
See Mark’s story
For information about personal health budgets, information and support visit the People Hub website.