With our Care Expert Spotlight series, we’re taking a peek into the lives of Wellthy's amazing care professionals.
This month we spoke with Lorraine, a Care Coordinator with extensive experience in the health and social services space. Wellthy’s team of Care Coordinators and Advisers work directly with families to understand their care needs, create a care plan, prioritize tasks, and get things done on their behalf.
What is your background in?
I’m a qualified social worker – I decided to pursue this career path a little later in life, beginning to get my degree at age 35. Overall though, I have over 19 years of experience working for the local authority, which is the NHS (the universal healthcare service in the UK). I started by working with people with physical disabilities, and then I moved into all areas of care. I’ve supported older adults, young people with disabilities, forensic mental health, and substance misuse.
My main areas of focus are mental health and disabilities. When I worked for my local authority, I assessed the social care needs of individuals, families and carers who came to us and ensured they had access to the right care pathway and care provision. I also managed teams in this space.
What I really love about this work is that I can make a difference in the lives of individuals and their families.
Tell me about your personal experience as a carer.
As I was studying to get my degree in social work, I was married and caring for both my daughter and mother. My mother had a range of healthcare issues including diabetes, high blood pressure and a range of comorbidities . She was diagnosed with diabetes in her 40s and she managed it well enough, but she was never the same. Even though she was on medications, I had to help her a lot more. For instance, her house used to be spotless, but then I started noticing little things like signs of hoarding whereas her house used to be immaculate. I also have a 6 year old grandson, who is Autistic, of whom I co co-parent with my daughter. He is the most interesting little man I have ever known.
She often resisted my support, despite really needing it. Furthermore she began eating out of control and couldn’t control her blood pressure. At times my mum was in and out of the hospital and gained a lot of weight. Before she died in 2015, I managed her finances, made sure she made it to her appointments, and managed her diet which involved making meals and freezing them. So for the better part of 20 years, I was the main carer for my mum and even though we had some external support (family, friends, neighbours) she was really fussy and didn’t want strangers in her home.
I know how difficult it is to juggle work and family commitments along with looking after a loved one. When I work with families, I really can understand the energies, dynamics, and dilemmas they’re going through. Where I may have not gone through what they have, I am able to listen to their experience and offer support in any way that I can.
What was the dynamic between you and your siblings like while you cared for your mom?
I’m the only daughter in my family and I have two brothers. Since I’m the only daughter and I work in social work, they were sort of like, “Well, this is your field – so I should get on with it!” It is important to note that my family has very traditional West Indian values. It can be quite a patriarchal experience when it comes to caring for a loved one and gender roles often can be prominent, so caring for parents can often fall on the daughter, and not the sons (albeit this is not a sweeping generalisation for all West Indian families by any means). The expectation within my family was that the role of the females is to provide the care. If I was to have vented to an aunt or cousin or something, their response would have been, “It makes sense that you feel that way, but that’s the expectation.” When speaking to colleagues, their responses were along the same lines of, “Well, you’re trained to do this and you’re resilient.” Because of this, I ended up finding relief through exercise (swimming) rather than having broader discussions about my caring responsibilities with those around me.
How do you think different cultural norms impact care?
Care is deeply personal and cultural. My experience with caring for my mother may sound completely ridiculous to someone whose family is more modern/Western, but it’s a real factor in my lived experience. I am working with a man right now who also comes from a different cultural background, to that of my own, and he has asked me to find in-home support for his wife after her surgery, but he won’t tell me what type of surgery it is because he feels that’s too personal to share. I find this sentiment is fairly common in the UK and that some aspects of their loved ones area of care/need is not up for discussion or sharing. I suspect that this might be an inhibiting factor for some of our Wellthy members who have access to Wellthy being reluctant to use it because of these cultural factors – many families feel that care needs to be handled by family members, not by outside help.
What is a mistake you commonly see caretakers make?
Believing that care is solely your responsibility. As I said, in the West Indian community, it’s the woman's role to be the caretaker. Once you start seeking help, you’re probably going to feel guilty for not meeting others’ expectations. You might be afraid to upset the apple cart or be thrown off the equilibrium. You want things to be calm and just chilled. This is so much deeper and more complicated than just saying, “Oh, you should just say no.”
If you find yourself in this position, it’s okay to have these feelings. It’s important to make sure you have people around you whom you can vent to and just talk openly with about how you’re feeling. See if you can get help with small tasks like taking your child to school or as simple as helping you to take out the garbage for collection the next day by the council. It’s all about who you trust in your network that you can share how you feel. Sometimes that’s family, but sometimes it’s not.
How do you work with someone who is resistant to help?
I work with families all the time whose loved one they’re caring for is super resistant to having outside support come into their home. And what I see happening very frequently when this occurs is that the family will come back to me every couple of months for assistance. What tends to happen is that there has to be a crisis before they’re willing to consider outside help. It really takes the caretaker saying, “I can’t do this any more” before they’re ready to accept the help. I often provide timely interventions that prevent care arrangements breaking down within the family home, so my role is imperative at this juncture.
What is one of the most memorable ways you’ve helped a family?
About a year ago, a family came to me asking if I could help them move their son with addiction issues to the UK, because he was being deported from the US. He didn’t have any family or friends in the UK, so I was his main support. I helped facilitate his move to the UK, helped him gain access to treatment services, helped him appeal housing and state benefits decisions. He had lived in the US for so long so I had to support him to evidence his habitual residence in the UK, but in the end with my support he was successful. We were able to get him his own flat by the Local Authority within a matter of months, which to be fair is unprecedented due to low housing stock and high demand. He eventually applied for a college course too. I believe because of my experience in the health and social care landscape in the UK, I knew exactly how to navigate the system to help this man. It was a great achievement for me at Wellthy, amongst others.
Is there anything you regretted when caring for your mom that you would offer as advice to other carers?
The hardest part for me when caring for my mom was planning for the inevitable, her death – I found it really difficult to have end-of-life discussions. My mum would say to me, “Okay I want a cremation and here’s where you can find all the documentation.” Even though she was talking to me, I shut down. So when it came time for her funeral, my one regret was that I didn’t ask what her funeral should have looked like. When someone passes away in the West Indian community, it’s a sad time, but it’s also very much a celebration of life too. So when I was planning it, even though I was so distraught and it felt like I couldn’t breathe, I was also able to have a state of euphoria when celebrating her life. Planning the funeral was actually quite cathartic for me. It was a very beautiful moving celebration of mums life – we released doves whilst a saxophonist played ‘One Day I’ll Fly Away’ by Randy Crawdford , poetry, and family videos. There was laughter, a massive BBQ, drinks, and music.
Even though it was beautiful, I do regret not asking her what she wanted her transition celebration to look like. Even though it’s a really sad thing, it’s really important to start thinking about your loved one’s end-of-life journey while they’re still here. That’s my one and only regret.
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