Marcello lives in the borough of Islington and is a carer for his mum. We asked him about how he finds caring, some of the challenges and what helps!
I am a carer for my mum. I live with her and help with everything that she needs to do in day-to-day life. She has a heart condition as well as vascular dementia and needs a lot of support. She has a wheelchair and I occasionally take her out and about. We used to go out more, but these days, she tends to like staying at home more, probably because of her health conditions.
How long have you been in contact with Islington Carers Hub?I have been involved with Islington Carers Hub for the last five years. A couple of years ago I attended the Carers Rights Day event at the Baptist Church and since then I try and go to their events whenever I can.
How easy is it to get a break as a carer?
One of the main challenges I have as a carer is that it is very hard to find time for myself. I can often need to be on call 24/7. Or at least it feels like that at times.
Whilst I would love to get a break, the difficulty is getting my mum to agree to anyone else looking after her. Even just going along to an event is useful though – it at least gives me a break during the day. We have carers coming in three times a day, mainly to help my mum with her personal care needs.
I usually assist the person that comes to visit from the carers agency so if I want to go to an event, I will often need to arrange ‘double-handed care’. This is when two carers come to help my mum. The other challenge is that it’s not very reliable when the carers will come.
Do you ever meet other carers?
I go to the Islington Carers Hub Carers Strategy Steering Group that meets every two months at the Town Hall. It’s informative and you get to meet like-minded carers. The meetings are useful and I hope that the things that we suggest are taken on board. I’m sure they will. We get to hear what has happened following our meetings.
Going to the carers events, it’s so nice to meet other people. I enjoy the walks that I’ve done with David from Carers Hub. It’s nice to get outside and speak to other carers. I come away with fresh ideas and feel more relaxed. It’s always good to hear about someone else’s experience and often other people have advice or ideas.
How do you find supporting your mum with medical appointments?
Getting an appointmentI do not find the NHS to be very accommodating to carers. They don’t seem to understand the difficulties to look after someone. The system works around what is convenient for them. Because we have carers coming in during the day, it can sometimes make it difficult to get an appointment that fits with this.
Valuing what I have to sayWhen I go to an appointment with my mum, I wish that doctors would speak in language that everyone understands. They can also be quite arrogant and dismissive and often don’t want to listen to my thoughts or concerns. I know my mum better than anyone else, so surely it would make sense to listen?
My mum has a heart condition, supraventricular tachycardia (SVT). This is when your heart can beat very fast and irregularly. The condition has meant that my mum has had very little energy and is constantly incredibly tired. For the past 2 years, it has impacted on her quality of life. She has been admitted to Accident and Emergency multiple times with a heart rate of over 150 beats per minute and this has been very stressful for both her and me.
The value of a second medical opinionIt is only recently that we were able to speak to a consultant cardiologist from Barts. The consultant was prepared to do a procedure which has been amazing for my mum. We’re nearly out of the three-month period following the procedure, and it appears that it has worked well.I was told before that this procedure was not an option for mum, which goes to show that it is worthwhile getting another opinion.
How is your own health?
A couple of months ago I had to go to Accident and Emergency, as when I went to the doctor’s, my own blood pressure was found to be very high. It’s settled now. I think it was all the worry and the stress that did it.
Do you have other family and friends that help?
Most of my relatives live in north London – Wood Green, Finchley. My sister lives in Spain but is coming over for 5 weeks. My birthday is coming up and I am hoping that we can go out for the day. It’s nice to see family and we try to get along.Do you have any advice for other carers?
I used to keep things bottled up and didn’t want to ask for help. I closed myself away and this left me feeling ‘boxed-in’. However, reaching out for help and sharing things can be really helpful. I’d recommend trying to go along to events if you can.
For more information
See the Islington Carers Hub – ‘For You’ section on their website for information about:
Opportunities to connect with other carers:
Islington Carers Hub – ‘Events & News’ section
And the Islington Carers Hub – Managing health conditions section.
Opportunities to connect with other carers
Opportunities to connect with other carers
Opportunities to connect with other carers
