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“I Hated the Word Alzheimer's”

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“I Hated the Word Alzheimer's” Summer 2019 Over 30 free breaks for carers caretime Bath and North East Somerset The newsletter for carers in Bath & North East Somerset “I hated the word Alzheimer’s” Tracey cares for her husband Paul who was diagnosed with early-onset Alzheimer’s four years ago, at 54. Paul currently works for a building firm who have been an incredibly supportive employer. But things have not been easy for the couple following his diagnosis. “Last summer, I had a bit of a wobble,” says hadn’t given myself space to grieve. But I was also Tracey. “Everything with Paul’s diagnosis just hit grieving for Paul too. Even though he’s still here, me – I hated the word Alzheimer’s, dementia; I he’s changing.” just didn’t want to hear it. I felt sad and angry with Lorraine suggested Tracey try the Coping with the whole situation. I felt like this shouldn’t be Caring course, a six session course designed to happening to us.” help carers manage the emotional impact of “I met with a friend who asked me if I was alright looking after someone. and I just broke down and said ‘no, I’m not.’ My “The first two sessions we didn’t talk about the friend suggested I call the Carers’ Centre – I have person we cared for. We were just ourselves, and been registered as a carer for a while, but I just focused on ourselves. I didn’t have to talk about hadn’t thought of accessing the support. Paul and what he could and couldn’t do until we “I spoke to Carer Support Officer Lorraine. She got around to talking about our caring roles in was just lovely, and so supportive. We talked the third session.” about how I’d lost my dad earlier in the year and Continues overleaf 0800 0388 885 [email protected] banescarerscentre.org.uk Follow us on Continued from cover One of the tenets of Coping with Caring is shifting After getting the valuable support from Lorraine your perspective to imagine how the other person and the Coping with Caring course, Tracey decided is feeling. to give back by running her first 10K race and fundraising for the Carers’ Centre. “I had been struggling with my frustration,” says Tracey. “I knew I was not reacting well to things. “I started running last year – at 58! I was inspired Now, instead of being cross with Paul if he gets after my daughter Becky ran a half marathon – she things wrong or misunderstands, I know to did so well and it was amazing to watch. I wanted distance myself from the situation. I go out of to feel that feeling for myself. I wanted to do the room or count to 10.” something I’d never done before." “All you need is your trainers and I find running really allows you to get in your own headspace. I “I recommend feel better in myself and healthier.” the centre to other Tracey took part in the Bristol 10K in May and carers – for me raised over £800 for carers. You can still donate at there was no better justgiving.com/tracey-seymour. support than “I really appreciated being able to call Lorraine for you guys.” a chat when I needed to. Her advice was to not let myself get to the stage I did last summer – to go and have a chat and a cuppa with her when I start The course also meant that Tracey could hear to feel down rather than trying to cope by myself." from other carers. “I recommend the centre to other carers – for me “I heard from people who are facing what I feel there was no better support than you guys.” to be much more difficult situations than me. If you’re a carer, or know a carer, who would like free That gave me a perspective I’d not thought advice and support, contact the Carers’ Centre on about before.” 0800 0388 885 or visit banescarerscentre.org.uk. A note from David, our Chief Executive Our focus over the next three months is Keeping Carers Well which means taking a break, accessing peer support, and looking after your emotional and physical health as a carer. This Carers Week saw the launch of our new Support Line which is now staffed 8.15am – 12 noon every weekday. We hope that this enables you to get your questions about caring answered quickly by our team of carers officers. We’ve also set up a dedicated support email address that you can write to any time. See page four for more details about contacting our Support Line services. After September we’ll see a change in the way we deliver our breaks programme. We have been incredibly fortunate to be funded by the Big Lottery fund to provide activities for carers over the last six years. Now this funding is coming to an end, meaning we will need to reimagine our breaks programme and it may look quite different next time around. We hope to continue to provide a variety of activities to allow you to take a break from your caring role. I look forward to seeing many of you in our centres over the summer. 2 How technology can help you Our Tech Navigators have been working hard helping carers with a wide range of tech needs. Look out for Cam & Leanna at your local carer café or at our “Tea, Cake and Tech” sessions, as advertised in the breaks programme. To find out more about any of the these services, ring 0800 0388 885 or email [email protected] Leanna “I have met some fantastic people who have wanted all sorts of support with digital skills. Some carers have wanted to get healthier by moving more. I have introduced them to the KiActiv programme where I mentor them with the use of an activity monitor over 12 weeks. Cam Amazing improvements have Mark “When I accepted the role of Tech been made by everyone. Some “Supporting carers with the Navigator, I was quite nervous; carers who have had no previous 12 week Mindharp programme technology is such a huge area experience with digital tech are has been a real inspiration. It’s a and knowing where to start can really enjoying learning new tool which can help them make be daunting. With every carer I’ve skills and achieving their goal music with the person they met, we’ve sat down with a cup of becoming healthier. Keep care for in a really simple yet of tea and just had a chat. Along up the good work!” creative way. Working with both the way I’ve tried to answer any carers of people with dementia, questions. And when I don’t know and people with autism, I have the answer, we’ve laughed as seen how the tool can help to we’ve learned together! I’ve been support a sense of wellbeing. asked a huge range of things, I’m really excited to work with from how to turn on a phone to more carers!” how to build an entire website! Every session has been really “I’m really excited relaxed and informal, and I have to work with had far too many cups of tea. But I look forward to a few more!” more carers!” Listening to Carers These projects have all been piloted or developed by our Carer Digital Panel. The Panel consists of a group of carers who help to influence how the Carers’ Centre use technology to help carers. We are looking for new members! If you’d like to get involved in person or virtually, email [email protected] 3 Getting Carers Connected with New Support Line As of Carers Week this year, we now have in link to free guidance for carers – new to caring place a new Support Line system that is staffed or otherwise – to help them manage the stresses from 8:15 to 12noon on weekdays by our specialist and strains of looking after someone. carer support officers. You can call free on We’ve also created a dedicated email address for 0800 0388 885 to get confidential advice, support questions, [email protected] support and information about caring. which you can email any time. The new email Our Chief Executive David Trumper says that address is part of our work to increase our digital looking after someone can leave you with lots services and encourage carers to get support online. of questions. Carer Support Officer Rose, who forms part of “Navigating the health and social care system, the Support Line staff, says some carers are just juggling work and finances, balancing caring and happy to have someone there to listen. other family responsibilities, as well as planning “Very often people call with questions about how to for the future is very challenging.” cope emotionally with caring and needing someone “Sometimes it’s good to talk to someone who to talk to. Sometimes it’s enough for carers to just talk understands and can help point you in the right through on the phone what’s going on and discuss direction and connect you with others going their options, or other times I’ll refer them through to through the same thing. Our free and confidential our emotional support services and courses, or other Support Line, staffed by experienced and friendly local services,” says Rose. Support Officers, is here to help you feel in “The other common query is benefit entitlements control of your caring role.” or help with funding – sometimes people just don’t Becoming a carer can happen overnight, affecting know where or how to start that process because it employment, income, social relationships and is confusing.
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