It was an absolute honour for me to be asked to share my views about parent caring during this Carers Rights Day 2016. The Local carers team did an amazing job setting this up and putting it all together. Many thanks to the Citizen newspaper for publishing the article. I hope that by creating more awareness, many parent carers will find the courage they need to confront all the uncertainties that lie ahead of them with their children more easily. The UK government tries to provide support through various agencies like the Carers UK, Social services, Community paediatric teams, Community nurses, and doctors within or outside the hospital setting. In some areas hospice care is made available to families with severely disabled children to help provide some well deserved respite from care while ensuring that their children are still cared for in a safe enviroment.
If carers do not come forward to access and the explore various support outlets, they just remain there unused. This defeats the purpose for which they were set up. This is why it is essential for Parent carers to access every possible help and support available. There is really no need no need to carry the burden of caring for a child alone. There is no need to habour fears about consequences of accessing well deserved support. Most of the fears will be reduced once parent carers begin to ask the right questions about what is available to ease the burden of care life throws at them with the existence of the illness of their child. There is a saying that a problem shared is halved. True, but I always like to think that this only holds if you share it with the right person. Getting support, asking questions and letting others help will be synonymous with sharing your problem with the right person. It is truly the right of every carer to access this support. You are not being too demanding you are just being wise and proactive. That on its own deserves applause!
I decided to share the article here To show my support for awareness being created on this Carers Rights day. Thank you as always for your support and readership. I know you do not realise it but every time you click, read and share my work you not only spread the word about what you have read but you support me on my own journey. It is strengthening that you find my work useful. Thank you.
So sit back, relax and enjoy the interview….
Carers Rights Day takes place on the 25th of November, a national campaign which brings unpaid carers, support charities and local communities together to help carers understand their rights and the support they are entitled to.
Carers MK supports over 4500 unpaid carers in Milton Keynes providing essential advice and information to those providing unpaid care to a relative or friend who due to illness, disability or frailty cannot manage without support.
Case Study: Parent Carer, Mrs Hope
Carers UK support those providing care and support to a child who is ill, has a physical or learning disability or additional needs.
Parent carers face huge uncertainties, stresses and challenges when faced with coping with their child’s condition, and it is important that they receive emotional support, advice and information to help them in their particular caring situation.
Parent Carer Mrs Hope has a four year old son who has an inherited metabolic condition called Propionic Acidaemia. His body cannot break down proteins but builds toxins in his blood. He was diagnosed when he was just 3 days old after he went into Coma due to an overload of toxin called Ammonia. and in February 2016 was admitted to Great Ormond Street hospital with chronic pancreatitis. He cannot be fed by mouth but with specialist intravenous feeds called TPN into a big vein in his heart.
Mrs Hope is now juggling visits to Great Ormond Street while also looking after her 5yr old son Mark. She and her husband take turns in shuttling between their local hospital and London to care for the boys. It is extremely strenuous on the whole family, emotionally, physically and psychologically.
Q & A
- What are the biggest challenges you face as a parent carer?
My biggest challenge has been accepting that my 4yr old son will not be perfect in every way a child should be. It was very devastating when he was diagnosed. Initially I felt overwhelmed with guilt because I learnt that the condition was an inherited one. Simply meaning that it came to be as a result of mine and my husband’s matching but defective genes. The realisation that his condition was incurable and degenerative fuelled my sadness for him. It was also hard to make his 5yr old brother understand that his younger brother was different. My 4 year old also suffers from severe autism (as a result of the Propionic Acidaemia). This meant that the 5 yr old brother initially struggled, believing the 4yr old deliberately chose not want to play with him. Our acceptance of the whole condition early meant we were able to reach out for help and support for our family.
- How do you manage caring for your son in hospital while looking after other members of your family?
I have managed considerably well since I began letting everyone in where safely possible. With a son as delicate as my 4 yr old, I initially felt I needed to do everything for him myself to get things done properly. Unfortunately, I struggled that way. I learnt to share the responsibility for him with the nurses at my local hospital or GOSH London (depending on where he was admitted). This freed up time for me to go home at least once a week to be a mum to my other son- to do the school run, take him to the park or just cuddle him. I have fed off this bit of normalcy. My husband and I take turns to be with each child in the hospital and home respectively and always spend the weekends all together at whichever hospital the 4yr old is being looked after. It is a less stressful approach that is working for us. It has enabled us foster togetherness in our not-so-normal family set-up.
- Do you have any time for yourself?
Yes I do. I have had to create time for myself amidst our sometimes chaotic life. I believe that there should always be “me-time”. We as parent carers tend to channel all our energies towards getting the sick child better. This is not usually sustainable for long-term caring. So I take walks, try to relax, enjoy colouring in the hospital play room and write. I find writing to be one constant thing that helps me make sense of my life. I set up a website whisperinghope.co.uk to help me share some of what I write with other parents.
- Are you getting support for your caring role?
I get lots of support from all the medical staff who handle my son’s care. We have all become like one big team/family. From the community teams at my local- both the medical, community nursing and complex needs teams, to all the specialist and multidisciplinary teams at Great Ormond street hospital. One lifeline has been the Carers UK team who provides a listening ear especially on very challenging days.
- What advice would you share with other parents in a similar situation to you?
My advice will be not to see the diagnosis of your child as the end. It is a new beginning. Perhaps, not the type you bargained for but still worth the shot! Come to terms with the condition quickly, Reach out for help because there is so much support out there. Stop blaming yourself- it is not your fault. Start asking the health professionals questions as soon as you can and don’t be too hard on yourself when you struggle. Rome was not built in a day, give yourself time and soon you will find the right rhythm for you and your family. The earlier you accept your situation with your child, the earlier you will start to make sense of it. It is easy to feel alienated because your friends and family may not understand the depth of feelings and emotions you confront and deal with daily. That may be true but always remember that you are not alone. Carers UK is a lovely place to start. They put you in touch with other carers who although may deal with different conditions with their kids,face similar challenges-caring. Carers UK normally hold parent carers support groups around the country through the local Carers groups. There is also the contact a family website with tons of resources that are helpful. Just don’t stay stuck. Reach out!
- Are having to juggle work and your caring responsibilities for your son?
No I care for my son full time.
- Would you advice other carers to get support from organisations such as Carers UK?
I certainly will. So many times when I have struggled, Carers UK have been on the other end of the line. They are also very good at signposting carers to local services that can provide support. I love how they listen and give me undivided attention when I call. They keep me informed about things happening in the caring world through regular newsletters and emails. What’s not to like!
Thank you for reading.
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.