Carers Week 2021

What is a carer?

A carer looks after a family member, friend, partner or neighbour who needs support due to illness, disability or old age. The help carers give is unpaid, though you may still receive Carer’s Allowance or other benefits. You do not have to care full time, receive Carer’s Allowance or live with the person you care for to be a carer.

Am I a carer?

It can be difficult for carers to see their caring role as separate from the relationship they have with the person for whom they care, whether that relationship is as a parent, child, sibling, partner, or a friend.

It’s likely that every one of us will have caring responsibilities at some time in our lives with the challenges faced by carers taking many forms. Many carers juggle their caring responsibilities with work, children and other family commitments. Some, in particular younger carers, are not known to be carers. They don’t tell relatives, friends, school or health and care professionals about their responsibilities because of a fear of separation, guilt, pride etc.

This means that the sort of roles and responsibilities that carers have to provide varies widely. They can range from help with everyday tasks such as getting out of bed and personal care such as bathing, to emotional support such as helping someone cope with the symptoms of a mental illness.

Where do I even begin looking for information & advice?

Once you have concluded if you are a carer, it can be quite overwhelming. The following websites are easy to use and navigate. They explain things well and have lots of useful information.

Carers Trust             Carers UK

Carers Bucks           GOV.UK - Carers Section

How does being a carer affect you? Read interviews from two of our carers below!

When did your caring journey begin?

My caring role began in the summer of 2018. My 15 year old, previously healthy son started having absence seizures, only I didn’t know what they were at the time. They can only be described as ‘confused episodes’. He looked and sounded like he was half asleep, only it was the middle of the day. He couldn’t remember what he was doing, where he was, what time or day it was…And once he was at the local shop and he left his money and shopping at the till and walked round in a daze, crossing main roads and walking around not realising which way was home. Then six months later he had his first big shaking seizure, he fell backwards off a dining chair all of a sudden.

What extra responsibilities do you have above your regular parenting role?

At first, I didn’t really think I had any extra responsibilities, but it soon became clear that I did. After seeing him shaking on the floor and knowing that a prolonged seizure is dangerous, I get so paranoid and always check on him. I check he is still breathing at night, I check he is still conscious in the day by talking to him and messaging him when he/or I am out.  I have to make sure he has his epilepsy safe pillow and no other cushions or pillows around his bed in the night. I have to make sure he is sitting somewhere safe when he has a seizure, I have to make sure he keeps on top of his medication and that I remember to order it. I have to make sure he doesn’t take extra medication as seizures make him have headaches. I also have to remember the other children, I make sure they are not scared when it happens, try to get them out of the room or calm  them down. Then talk to then after to make sure they are ok. It just comes naturally now. Then there are the extra Dr’s appointments, hospital clinics, blood tests, scans etc.

Do you feel extra pressures as a carer?

I do! Basically, I feel extra pressure just to keep him alive. Which is CRAZY, I mean that’s our responsibility as a parent anyway right. I check on him ALL the time. If he says he is feeling funny I jump on it. But when you hear all the stories of people passing away from epilepsy related deaths age 20-40, well, I just can’t imagine it and thank my lucky stars we have his seizures under control for now.

What impact does it have on your child?

Having epilepsy has a massive impact on my son. There are some main things he is advised not to do that we take for granted - riding a bike, swimming, having a bath, sleeping with a lot of soft pillows and staying up late. When he had tests on his brain they showed particular reactions to tiredness, this is a major one for him. He has to be in bed by about 10.30/11 and get enough rest and sleep, when you are 17 and all your friends are up playing video games and chatting this is a big thing. He is a sensible lad though and understands. Most things he is advised not to do are for his own safety, like being alone in the bath for example, drowning with a seizure is a common problem (and having your mum keep calling to you when you are trying to shower isn’t much fun I imagine!). He has also had to tell his friends, college and employer. He is lucky enough to not had any seizures around anybody but family so far, but everyone he has told has been super supportive. He was working for his GCSE’s when he first developed epilepsy. Apparently, it’s a common age. Stress doesn’t help. So we had to tread very carefully around revision and making sure he wasn’t feeling to pressured. Also when Covid 19 put is in to lockdown he was super anxious and worried, this led to a few seizures in the first lockdown while he was adjusting to things. All in all he manages really well. He takes it all in his stride and works hard to not let it be all that he is.

What impact does it have on your family?

It does have quite a big impact on our family. We have two younger children, a boy age 14 and a girl age 10.  Although they fight normally (like all siblings) they always go running if they hear thuds to check and know the early signs.

We have to make sure we aren’t out too late now, that he doesn’t get too tired or stressed, or if he does, that we are mindful for what might happen. My husband and I have to always be on a level of alert with him that you don’t thing you will ever need to once they get to that age. To think about how long he has been in the bathroom for, has anything happened? How long he has been on his journey back from work or college? How long has he been sating he has a headache for? Does this mean something more? Do we need to get him sat in a safe place where he wont fall and bang his head? Do we need to move the coffee table, get pillows ready? It sounds over the top, but its so much to think about in these situations and you just automatically do it.

What gets you through the tough times? Are there any tips you can give others?

Tough times hmm.. well mainly having people to talk to. Friends. I tell my friends all my worries and fears. I am a firm believer in a social group. Right from when I was a new parent I started going to groups with my children. Making friends who are in the same situation as you is the best therapy and help you can get for free. People who can empathise and share your concerns, maybe offer tips, or just listen. Covid has made this harder, but we have been using text, WhatsApp and zoom.

I am fairly new to epilepsy, but a friend put me in touch with a mum whose daughter had had epilepsy for many years and it was good to have her to talk to and ask questions (and basically feel like I wasn’t alone, there isn’t a specific epilepsy group locally).

Then obviously we have a carers group at BHPT, I help run it with Lisa, which is great because I get to attend and hear all of the information and listen as well as help everyone and hopefully, make a difference to the lives of other carers. Its good if you are able to get out and attend support groups in person. Even for that couple of hours break, chat, drink and sometimes fun activity.

Another tip I have is a hobby. I love doing arts & crafts, it is known to be therapeutic and help relax you also. Things you can do to distract yourself are good, reading.  I think it also is something you have control over when you feel out of control with other things in your life.

When did your caring journey begin?

On March 5th 2013, I had managed to get a Dr's appointment after the school run. I had noticed my daughter who was 18 months old at the time was extremely thirsty and tired. She was also soaking through her nappies. I had in my head she probably had a urine infection, nothing serious. We were then rushed straight to hospital. I had no idea that day would change everything for our family.

What extra responsibilities do you have above your regular parenting role?

My daughter has Type 1 diabetes and coeliac disease. This involves checking throughout the day and night that her blood sugars are in range and treat accordingly. This is made easier by her having an insulin pump which delivers insulin via a cannula so no injections. The insulin and cannula are changed every 3 days which I do. Also she has a Dexcom G6 constant glucose monitor. This is inserted into the skin like a cannula and measures her blood sugars and gives readings every minute. These need to changed every 10 days which I also do. This does not completely eliminate the need for finger pricking to get a blood glucose reading. So when she goes out of the house we always take treatment for hypoglycemia (low blood sugar), an insulin pen just in case her pump fails so I can administer an injection and spare pump bits so I can do a set change when we are out. I need to put in her pump carbohydrate values for all food and drink she eats. Also ensure that everything she consumes does not contain gluten, wheat, barley or rye. I also have to order insulin and other bits for her on prescription making sure we have enough but not too much. Also order her insulin pump and Dexcom G6 consumables and manage the stock of them. I also deal with her DLA applications which are never easy.

Do you feel extra pressures as a carer?

Yes I do, I worry about her health as she has a compromised immune system. I find it hard for her to have play dates when I do not know the parents. I constantly worry about her. It’s hard to juggle so many things at once and the fear of letting her down or other family members gets too much sometimes.

What impact does it have on your child?

A lot, we are still working with the Pediatric Psychologist attached to the Diabetes team. She knows she is different and it really upsets her. She can’t eat what she wants. She is more mature with life than I would like her to be at 9 years old. Even though to some people she seems confident she is very insecure about herself.

What impact does it have on your family?

It just makes spontaneity really difficult as everything needs to be planned, we need to take medical supplies and food out with us. Grandparents are still very apprehensive about looking after her, just incase they get things wrong. My other children feel guilty they have good health. We go without somethings as her gluten free food is really expensive.

What things cant you do now that you could before?

A difficult one as she was diagnosed at 18 months old. Similar to my previous answer.

What gets you through the tough times? Are there any tips you can give others?

My friends and family are awesome, we have cried and laughed together. The Diabetes team are great. I also find my crafting a great help, it’s a total switch off. I know there are many more good days than bad. My reason for doing this is to keep my daughter in the best health I can, that’s enough for me.

BHPT Carers Support Group

This is our group for Carers. We run it in partnership with Carers Bucks. It is currently on hold due to Covid restrictions, but we are hoping that we will be able to restart safely soon. We gather monthly with guest speakers, trips out and chat & support each other with the problems & feelings that arise when caring for loved ones, friends and neighbours.

The group is held in Burnham Youth Centre, Minniecroft road, Burnham and is on the last Friday of the month from 12noon until 2pm.  It is a free group and you can just turn up.

We try to make it a fun space to come and enjoy a bit of a break away from the caring responsibilities, if you can. A confidential space, you don't have to talk though, you can just come for a coffee and just listen and not say anything. Call us if you would like to know more.

There is so much help and advice available to registered carers, please do register as a carer with your Dr's surgery and register online with your local Carers Support Service (Carers Bucks for Bucks residents or Slough Carers Support for Slough residents).