It’s Carers Week, and the theme for 2020 is ‘Making Caring Visible’. Carers should be celebrated for the incredibly vital work they do every day for friends and family members. This week we’ll be sharing the stories of a few of our carers, to shine the light on the amazing work carers are doing right now, and to let them know that we are here to offer support and guidance along with practical and emotional support.

Caring for someone with Dementia

Graham* is a 73-year old carer for his wife who has dementia. His wife is disorientated, and so Graham always has to be very vigilant. Twice while they have been out, she has got in the passenger seat of a complete stranger’s car that was parked next to them. She fell and broke her shoulder while out as her dementia has now affected her walking ability. He does all her personal care and dressing, as well as the laundry, ironing, cooking, tidying up.

Graham has a blood cancer condition which is managed with Chemo in tablet form. He has had a heart attack in previous years and a trapped nerve in his neck.  This can keep him awake at night, then in the day the care load starts again. He is aware that his own health can be vulnerable too and he wants to take care of his wife always if possible. To help make ends meet, he also works part time.

Recognising that he needs to maintain his own wellbeing, Graham reached out to CSWS for a Carers Assessment. Our staff were able to grant him funds for improvements to his home and garden and have helped him to apply for an Attendance Allowance. We were also able to help him apply for a Blue Badge, as his wife has difficulties with walking.

Graham now feels supported and empowered with improved finances, health and wellbeing, and a long-term plan to allow both him and his wife stay in their own home. He also knows that Carers Support will always be available should he need any further support or help in the future.

*Name changed

Caring for someone who is affected by Drug and Alcohol use

Caring for her alcoholic husband took Anna* to a horrific low when he tried to shoot himself and she had to take the gun out of his hands.

Her husband was unable to fire the gun but was arrested and later appeared in court.

In another episode Anna’s husband, whose health is failing, collapsed and it was while she was in hospital with him that she heard about CSWS.

Anna, 70, who has cared for her husband during the 20 years of his alcoholism, explains the daily toll of living with his disease.  “He lies all the time. We have lost a lot of friends. He has lost his job, the whole village knows and it sets you apart. We have no children and that sets you apart and when you are living in a messy marriage people avoid you. We can’t do anything socially together – he is 73 and I’m sure he is developing dementia. His general health is getting worse and he is verbally aggressive. When not drinking he can be active and even creative and seems quite relaxed. The main problem is that things can change rapidly for no apparent reason and that can prove stressful and occasionally embarrassing.”

Anna says she also supports her 93-year-old mother-in-law, taking her to appointments and doing her housework when her husband is having an alcoholic episode.

“It all feels a bit bleak,” she says.

But Anna says a beacon of support in the grimness of her everyday life is the monthly support groups provided by CSWS for people caring for someone with a drug or alcohol problem.

“It’s very, very helpful talking to people who understand the situation, who have been through something similar and tortuous and frightening and upsetting and I think the group makes a difference.

 “Having people around, even if just once a month, is important.  Even if their stories are different their lives are made chaotic by someone else’s self-abuse and that does make a difference.”

“I’ve been going to the group now for seven years and as well as the support it’s a place where you can let go and know that they will understand. You see the appalling stress they are under that doesn’t go away but at least you feel someone is relating; they are on the same wavelength as you and they are honest and straightforward about it.”

As well as support groups, Anna has been able to take advantage of the learning offered under our Carer Learning and Wellbeing Programme and also enjoyed some of our Carers Week 2019 events.

“I realise no one can wave a magic wand but without the group I’d have felt very, very low – watching someone destroy themselves year by year is not very nice. It is hard but that’s the way it is and having the group makes a big difference and the coping strategies do help and give you a bit of a lifeline.”

*Name changed

Caring for someone with Learning difficulties and challenging needs

Michaela is carer for her 29 year old son who has Autism with speech and language and learning difficulties.

“’I was having an awful lot of problems with my son’s day care centre – I really felt that I wasn’t listened to and struggled just to get his needs met and there were certain things there that were of great concern. I became very helpless in knowing where to go, what to do, who to talk to. I felt really depressed, isolated and was made to feel that I was a problem. I was dealing with my son, who doesn’t sleep well and has his own set of problems and this all had an impact on my health and I was diagnosed with Chronic Fatigue Syndrome.

After four years the whole thing was wearing me down – I had no one to turn to, no family, no one around – I spent so many nights just crying, not knowing what to do I’m not a person who was like that. I’d previously campaigned for autistic education. I’d been proactive, was a strong, tough person and yet here I was – a shadow of a person. I’d heard about CSWS and gave them a ring and they empathised with me and allowed me to speak freely.

That’s when I realised I was not alone and other carers were going through similar situations. When I finally opened up about how I was really feeling they organised a Call Back for me and that was absolutely a godsend. I’m not a person who would ring and ask for help. But the Call Back service just always happened at the right time and I spoke to the same person.

She was there when I needed to talk about things or just to talk nonsense—she met me where I was at, whether I was in tears or angry – she let me just talk it out and afterwards I was up and running again. She became my best friend –someone I could tell anything to and say whatever I felt I needed to say; to get it all off my chest and allow me to feel normal; that other people had gone through this and that I wasn’t just a person who was difficult. CSWS helped me get the support I needed for my son—step-by-step they took me through the stages needed to support my son’s emotional challenges.”

At the best of times this would be a difficult situation for a large, young family to find themselves in. With the Covid -19 lockdown a lot of options regarding how to make the best of this situation have taken away from this family e.g. going for days out, etc, making it very hard to enjoy the time left together.

*Name changed

If you feel you are in need of some support, no matter how big or small, around caring for someone, please do get in touch with Carers Support West Sussex today. We are here for you.

Contact us on 0300 028 8888 or email info@carerssupport.org.uk