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The Life of a Carer: experiences of caring and the aftermath

Bethan kindly agreed to talk with Diverse Cymru about her experiences as a Carer and what life has been like after caring. In this piece, Bethan’s lived experiences will be drawn upon, much of which has been felt by many Carers. This piece highlights what needs to be improved for Carers and draws on best practice from life after Caring.

Bethan’s experience as a Carer

Caring for Bethan began as a gradual process. She started caring for her mum part time when she was in her 20s alongside her job. Then, after some time “something had to give” and Bethan gave up her job to become a full time Carer for her mum. Her mum was battling cancer and suffering from Dementia towards the end of her life. Life was very lonely as a Carer. After some time caring, she hired night sitters. Bethan commented that her night sitters were the “only social being” in her life, with little contact with friends and family. She found it tough, she felt that there was not always the help that she needed and she invested a lot of her life and emotions into caring for her mum. Bethan commented that as a Carer, “you do lose your individuality” and that “your life is put on hold”.

In our discussions she detailed many difficulties of being a Carer. In particular, she has highlighted issues with lack of adequate support, insufficient care packages and the lack of specialist dementia training, both for health and social care staff and for herself. A lot of these issues could be resolved, making life for Carers slightly easier.

Experiences with staff

Bethan recalls the experience of taking her mum to hospital after her she had a fall. She found that ambulance staff were unable to detect her mother’s dementia, as was the same with hospital staff. As a result, they were not aware of what would make her mother agitated and failed to understand her mother’s confusion and actions. This lack of training and lack of communication with Bethan had detrimental effects. This caused great lack of understanding, leading to Bethan being wrongly kept in Cardiff Bay police station overnight under safeguard and being unable to see her mum for 3 weeks. Bethan was cleared of this but has found it difficult to overcome emotionally. Bethan was close with her mum so found the time away from her very distressing. She felt that had these staff members been trained and confident with the signs of dementia, and if the communication had been better between her and staff to work out why her mother was agitated, this incident could have been avoided.

A lack of training amongst staff

During our discussions, Bethan spoke about the importance of choosing the right care agency, as she found that her first choice included some care staff that were not dementia trained. She found some instances where the lack of training provided to the care staff had an impact on her mother’s behaviour once the care staff had left.

She also found a lot of problems with the lack of dementia training given to her social worker which resulted in a lack of sensitive treatment towards her mother. Therefore, Bethan feels strongly that not enough is being done with the Councils and supports the work currently being carried out by Carers Trust who are looking to provide social workers with appropriate training.

Support Provisions

During our discussion, Bethan referenced the lack of support as a Carer and noted that support should have been available to her from the start. She found that she was having to do a lot on her own without any help, including physio exercises, contacting care agencies, collecting medication and fighting to get her mum discharged from the hospital. Bethan found help in services from the British Legion but commented that these services were taken away from her as soon as her mum died. She referenced the clear importance of charities such as Carers Wales and Carers UK, as well as the need for the promotion of support groups from the beginning and provisions for specialist training in relation to dementia.

“I didn’t have the support, even to the end, almost end of life. Very limited. The [older persons] commissioner wants to know about things that are happening. I know it is changing now but it is all too late for me. It is hugely important that they [Carers] get the right support from the beginning… Nobody told me about Carers Wales or Carers UK. Nobody told me about those things.”

Charities such as Carers Wales and Carers UK were praised by Bethan, but the key point raised was the lack of awareness and promotion given to these services, as she didn’t know about them until after she was caring.

Bethan noted that positive changes are being made in terms of support services. Nevertheless, the issue has not been resolved, with Bethan noting that from her current work in various groups, she has heard that lack of support is still a problem. Therefore, Bethan suggested that greater support provision was needed to help Carers, as this would have helped her when she was caring.

Care Packages

One of the major issues Bethan found with support was the lack of support given to her in the care package provided by the Council. She was having to run the house and care for her mum most of the time and described caring as being on a train, with no time for herself. She cared for 40 days and 40 nights without support, with the need for respite only being mentioned once she contacted the crisis team:

“I phoned the doctor, I was not sleeping, I was not eating, I was all over the place. They brought the crisis team in, within 2 hours they were here, they phoned the GP and said “she needs respite.””

Additionally, Bethan found that there were limits to what the care staff could and could not do, as referenced in the care package. This meant that she still had to do a lot of jobs on her own with little support:

“I was having to do her stoma and the one girl that came who was a very experienced carer and had done the training, but once again it wasn’t in the care package, so I was doing her stoma.”

Bethan also found that care staff would be willing to help with her workload, by assisting with cleaning and other housework, but were prohibited from doing so as it wasn’t in the care package. Bethan detailed how she had to care for her mum whilst maintaining the house and making sure they had enough food to eat. This presents a clear barrier to easing the heavy workload on Carers. Therefore, she feels that the right specialists need to be involved when care packages commence.

A lack of specialist training for Carers

Bethan also detailed the lack of training given to her around dementia, which again made her feel unsupported.

 “I thought at the beginning, and I know a lot more, when they said that my mum had dementia that they would get me support for the Alzheimer’s but I had to find that out for myself.”

Bethan was left to struggle without support or assessments for 20 years. Bethan detailed her journey to finally get training that she needed, but it was a hard and stressful process. She eventually undertook a Carers assessment around 3 months before her mother’s death. However, she was told that she had to complete the dementia training sessions in her respite time. This was supposed to be time for Bethan to collect herself and re-energise, but this was taken away from her. This experience demonstrates a clear issue that needs to be addressed.

The points discussed above were the main barriers to being a Carer in the community. These discussions highlight some clear areas that need to be changed to help and support Carers.

Life after Caring

One of the most important things stressed by Bethan was that just because your caring responsibilities end, that doesn’t mean that everything resumes as normal. She commented that “the battles don’t stop.” Bethan was heavily impacted emotionally by her mother’s death. She commented that there was nothing in place afterwards to help her afterwards and suggested that there should be something like an end of care review where Carers are assessed for any support that they need, be this emotional or financial.

 

Issues with finances

The financial hit that Bethan has taken after caring is perhaps an underestimated side effect. She spoke about the issues with Universal Credit and how it is not enough to live on. She detailed how she has had to improvise with budgets and make some tough financial decisions, going without some necessities in order to buy food. “An advance on your Universal Credit payments may be given at the beginning,” she said, “but then it has to be paid off,” which has eaten into the money she has received. From this money, Bethan was having to make arrangements for her mother’s funeral. She found that some companies were not sympathetic to financial constraints, stating that there is a lack of a “human level” to these services.

Best Practice- The Value of Third Sector services

Despite life after caring being a struggle, she has found great comfort in Carers Cuppas set up by Carers UK and Carers Wales.

“Thank god for Carers Wales and Carers UK, they are actually organising the cuppas now so that people can vent and talk to people.”

Thus, the work of third sector organisations such as these are of value and demonstrate how Carers can be supported.

Best Practice- Involving people with lived experiences

Bethan detailed that she always thought that her life could return to some normality and she would get a job after caring. She applied for a care job, but found this was not the avenue she wanted to go down. However, she found a real love for getting involved in the community. Just some of the things that Bethan is involved in include: Working on the Recovery Plan with the sub-group partnership board; working with the mental health Recovery College, assisting representative consultation work and developing online courses; working with the Dementia lead group; being a member of the Carers panel; and attending Carers Cuppa UK and Carers Wales meetings. She felt that this involvement has had a real positive effect on her life and said that people with experiences like hers should be involved in more engagement events. Her involvement demonstrates the value in collaboration and consultation with those who have lived experiences that they can share. For example, Bethan is helping to develop a sleep course for the mental health recovery college. Thus, processes such as these are really important in order to generate change.

Carers in Lockdown

Potential issues for Carers

Given the current coronavirus pandemic, Bethan raised issues on what this means for many Carers. One of the major issues raised was burnout. Bethan commented that if Carers weren’t not getting the breaks they needed before the pandemic, this is only likely to have worsened, leading to exhaustion. Carers are also missing the day centre provisions which gave them an opportunity to re-energise. She commented that the Welsh Government and local authorities need to look at how they are going to get extra support to Carers during the recovery period. Other Carers are unable to receive the support they need, such as dieticians for dementia and Carers’ assessments. Bethan suggested that there needs to be greater consideration of new ways of working, through phone calls and video calls, to alleviate this impact.

Bethan also highlighted the impact that current supermarket provisions have. During her time as a Carer, Bethan detailed that some weeks she would only have 20 minutes to do a food shop. Therefore, the delays associated with supermarkets currently fail to meet the needs of some Carers. However, Bethan spoke of the importance of volunteers in this context, as they could provide Carers and their families with basic supplies, saving them time, but also ensuring that Carers are not overexposed to the pandemic.

Positives to draw from the pandemic

Nevertheless, she also discussed some positives from the pandemic. In particular, the virtual meetings are, to an extent, more inclusive. For example, the Virtual Carers Cuppas can now take place in the comfort of your own home, meaning that many Carers can now enjoy this social outlet whilst caring for loved ones.                                                             

Conclusions and key points

Our discussions with Bethan have been very informative in gaining insight into life as a Carer, and has raised some key issues that need to be addressed. In light of these conversations, recommendations include:

  • Ensuring that staff who may come into contact with people with Dementia receive Dementia training so that services and treatments can meet the needs of the individual and their Carer.
  • Councils need to collaborate with Carers Trust to ensure that staff, particularly those in social services, receive adequate training in different areas so that Carers and those they care for can be assigned a suitable social worker.
  • Ensuring that Carers receive support from the beginning. This includes through adequate training, promotion of third sector support services and time allotted for respite. Importantly, respite needs to be used for just that- a rest for Carers.
  • The Third Sector is clearly valuable in supporting Carers. The work of organisations such as Carers UK and Carers Wales need to be promoted so that their work can reach more Carers.

Nevertheless, once the Caring is over, normal life does not resume. It is clear that support is needed afterwards. There are steps that can be taken provide this:

  • Provide and end of caring review to ensure that Carers have the support that they need, whether this is emotional or financial.
  • It is clear that financial difficulties among many Carers who feel that they are starting again need to be addressed.

Further, Bethan’s story highlights the importance of engagement, collaboration and co-production with those who have lived experiences. The contribution of those with lived experiences is invaluable to influencing positive change.