Carers are the best people to tell their story and demonstrating the benefits of being involved, accessing support service that meet their needs and promoting to other cares the plus points of knowing what support and advice is available. Here, they share their stories.
Maureen is a returning carer. She first become known to the Fife Carers Centre in 2015. After a brief period where no support was required, she contacted the centre again in August 2017 seeking advice and support. An introductory visit to meet Maureen and her husband at their home was arranged. Maureen said she was feeling very isolated and frustrated by her husband’s apathy as a result of his diagnosis of dementia. This manifested itself through outbursts of anger and tears.
The Fife Carer Centre Support Worker suggested that Maureen’s husband might like to join the newly formed Men’s Dementia Toolshed at the Ecology Centre at Kinghorn Loch. Maureen was very reluctant at the thought of her vulnerable husband travelling there unaccompanied every week. To help manage this anxiety the support worker agreed to take Maureen’s husband to visit the Toolshed and spend some time there. He loved it – he was desperate to become part of a new project. The support worker helped Maureen to organise a weekly taxi transfer to the Toolshed. This time gave Maureen a regular break from her caring role, important time her herself. And it was only possible as a result of the extra mile the support worker from the Fife Carers Centre was able to take.
Beth is 41 and works as a personal assistant. Both of her parents have life-limiting conditions and she has spent 18 months caring for them on her own. Colleagues at the hospital had concerns about Beth’s emotional and financial wellbeing as a result of her caring role. Beth was referred to Sandra, the Hospital Carer Support Worker at Victoria Hospital when her mum was due to be discharged from hospital with a terminal diagnosis.
Sandra worked closely with Beth by supporting her to complete benefit applications and arrange a Power of Attorney to provide some financial security. She was referred to support sessions to enable her to better understand her dad’s dementia. And importantly, Beth was assisted to plan the respite care she needed going forward in looking after two frail parents.
Yvonne and Hugh’s story
Yvonne is the carer for her husband, Hugh, who has a progressive illness and is terminally ill. What you will hear in this short video is how Yvonne is unfamiliar with the way the system of support works and how she has struggled to navigate it to find the help she needs to be able to care for Hugh. She tells us about how she was referred to Fife Carers Centre, the support and advice she was provided with by Sandra, and the benefits and positive impact this has had on Yvonne. She talks about the compassionate emotional support she has received from the service and her fears for what might have been had this high quality support for her as a carer not been available. Part of what you will hear is how the support for Hugh is actually a support for Yvonne, making her role as his carer easier, more sustainable and more effective.
Barbara tells us about how she was referred to the Fife Carers Centre to help and support her as the carer for her husband who had a fall, hit his head and who has been ill ever since. She tells of the direct support that was made available to her, including short breaks and emergency planning, and how this has made a difference to her. As is a common feature with most carers, her thoughts had been on caring for her loved one with little consideration about her own health and well-being. Now she and her family recognise the importance of Barbara being well in order to thrive in her caring role.
Sarah and her mum’s story
Fife Carers Centre received a call from Sarah looking for advice on how to support her parents with her dad’s diagnosis of dementia. The Carers Centre arranged for an introductory visit to meet the family and have a chat with Sarah’s mum about what sort of support she could benefit from as a carer.
The support for Sarah’s mum included informal counselling and referral to Women’s Aid following the disclosure of abusive behaviour towards her. In line with protection for vulnerable adults, a referral was also made to social workers.
Fife Carers Centre provided additional advice and support to the whole family while dad was admitted to hospital under the Mental Health (Scotland) Act 2015. The Carers Centre worker provided advice on how ‘the system’ worked and gave emotional support to Sarah’s mum. Following medical assessments, the multi-disciplinary team decided that it was not appropriate for Sarah’s dad to return home and he was put on the list of sheltered housing.
Dorothy and Bill’s story
Dorothy is a carer for her husband Bill, who has dementia. As we will hear from Dorothy in this short video, she has her own significant health concerns and was worried about what she might encounter when she returned home after a major operation. Dorothy wasn’t sure she would be able to cope with the situation. After being referred to the Fife Carers Centre, Dorothy found the burden of caring was lifted somewhat. She received emotional support and advice on what options are available to her in order that she can lead her own life as well as being a carer. Dorothy gives us a few examples of how the help she has had, has made a difference to her and to Bill, from respite short break care to simple things such as shopping to prepare for her own return from hospital.
Margaret and Ena’s story
George lives at home with his wife Ena, who has her own on-going medical issues. George and Ena receive support with personal care and meals. Between them they have 11 children but most of the care falls to George’s step-daughter Margaret who helps them with domestic chores and shopping so that George and Ena can remain in their own home.
Margaret is becoming increasingly stressed in this caring role and feels George would be best placed in alternative care. Ena also often gets irritated by George.
George was admitted to hospital with chronic pain and inability to cope at home. This was his fifth admission in eight months due to multiple medical and social issues. George has clearly expressed his wish to return home from hospital but his conditions and behaviour mean this is complex and could lead to a deterioration of his abilities leading to frequent hospital re-admissions and further stress for the family.
Before being discharged home the Patient Flow Co-ordinators at Victoria Hospital took steps to discuss George’s progress with him, and the medical staff on the ward as well as with other family members who had raised concerns about “what would happen with discharge this time?”
The Patient Flow Co-ordinator felt that George had so many failed discharges and re-admissions to hospital that Short-Term and Rehabilitation (STAR) facility would be best possible outcome this time. STAR is used to determine the care required over a 24hr period with a re-ablement approach through a period of assessment in a care environment. The purpose is to be able to discharge George home with the appropriate equipment, care and support network to prevent further hospital admissions.
While George was receiving care in the STAR facility, the Patient Flow Co-ordinator referred his carers, Margaret and Ena, to Sandra, the Hospital Carer Support Worker at Victoria Hospital, to develop a carer’s support plan with them. Sandra was able to listen to the concerns about care and family dynamics to establish the key outcome needed in an action plan to meet their own support needs as George’s carers. She explained her role as the Hospital Carer Support Worker for Fife Carers Centre and the support she could provide to Margaret and Ena to help them prepare for George’s discharge from hospital.
The outcome of Sandra’s visit to Margaret and Ena was productive and will be on-going for the foreseeable future. Sandra discussed coping mechanisms and various methods of support and what requirements needed to be in place for George and Ena on his return to live in their home. She was able to support Margaret with an appropriate carer support plan and agreed to meet regularly for carer support whilst George was within STAR. Once George was back home Sandra was able to liaise with her community counterpart at Fife Carers Centre to provide a hand over for continuity of support in the community setting.
This case study demonstrates the successful use of a multi-agency, cross sector approach to facilitate a supported discharge for a patient and particularly the development of an outcome based support plan for his carers. All involved have felt supported during a very difficult period in their lives.
Lynn is a carer for her terminally ill father and ageing mother with her own health issues. She became aware of her need for support in her caring role at a time when she herself had been poorly. Her caring situation is supported by her own positive and strong network upon whom she is able to call and rely.
Lynn made contact with the Fife Carers Centre seeking support. As she tells us in her story the initial consultation gave Lynn some breathing space and time to reflect on her own situation, not just for the immediate future but also for the longer term. As is often the case the help Lynn received as a carer focused on helping her to be an even better carer building on the personal assets already in place as well as receiving help and advocacy support to provide a better life for her mum and dad.
George has been a carer for his wife for over nine years. In this short video George tells us how he was conflicted at first between these two roles of husband and carer. It was as a result of receiving support from Fife Carers Centre and going through the process of a carer’s assessment that he is now better able to understand the nature of his caring role and how this is different from being a husband. George has received practical support, expanded his social networks and was taking time away from his caring role through a short break while recording his story.
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