Introduction

 

Working in social care often involves interacting with a vast array of people with different backgrounds, health conditions and needs. Occasionally, however, you may be asked to work with someone whose multiple needs are more complex than those you usually encounter. 

 

Using my personal experience of supporting a close friend with multiple complex needs, this article explores how we can best interact with individuals in such challenging circumstances.

 

 

My friend’s terminal diagnosis

 

When my friend’s health began to deteriorate to the point that she was diagnosed as terminal, I stepped in to support her in accessing social care, arranging home adaptations, managing multiple medical appointments and sourcing home care.

 

She was a very strong, intelligent and independent woman, who did not want to be seen as weak. She was uncomfortable with her increasing frailty and the limitations that it put on her, and her mental health conditions worsened causing her to behave in unusual ways.

 

I could relate to some of her concerns by reflecting on my own journey and healthcare needs, particularly in terms of worrying about how she was perceived, not wanting to be a burden, being apologetic about needing care and constantly minimising her needs.

 

She had lived with multiple physical and mental health conditions from a young age and adapted to them, learning to mask her symptoms and keep her behaviours from even her closest family and friends throughout her adult life. When her physical conditions deteriorated and she was unable to leave the house, she was forced to let people into her life and bear witness to her private struggles. This was enormously challenging for her, and for a long time only myself and a couple of other trusted people were able to visit her in her home. She could not endure delivery drivers, workmen or even many close friends or family entering her private space, in case they saw how she lived and judged her.

 

Some of these feelings came from her obsessive compulsive disorder (OCD), eating disorders and severe anxiety. Her OCD manifested itself in counting, hoarding and cleaning. Everything had to be done in a certain way, often involving a certain order and specific numbers (for example, she needed 3 drinks and 3 snacks at all times). The kitchen floor needed to be scrubbed every day and rubbish had to go outside before she went to bed. No-one could enter the spare bedroom in her house, open any cupboards or even go into the fridge to get milk to make a cup of tea or coffee, as the house was full of out of date food, old and broken items that she was unable to throw away and numerous packages and letters, which were left unopened due to her anxiety. Although she felt compelled to behave in this way, she personally found her behaviour unacceptable and did not want other people to see it.

 

As her health declined, she eventually became physically incapable of continuing with her cleaning rituals and routines and finally accepted the help of carers.

 

The process of accessing home care is lengthy, complicated and intrusive. I was with her every step of the way, but having to allow social workers, occupational health, care company representatives, carers and workmen into her home to support her and make the required adaptations was more than she could bare. This lengthened the process as we had to work to her timescales, sometimes leaving weeks between meetings or actions. This was to enable her to consider the situation, assess what was required of her and what level of intrusion it was going to have and calm herself until she became comfortable enough to move onto the next step.

 

At times this was frustrating for everyone involved as we often had to change meeting dates, delay work being done on her home and invite people for a pre-meeting to introduce themselves to her before the actual meeting. However, it was also beneficial for the people involved to actually experience the challenges that she faced rather than just hearing about them. Enabling them to understand her behaviours and her need for time to digest new things with greater empathy and understanding.

 

 

Employing a care company

 

When we started interviewing care companies I did some initial research online, checking that they were able to support someone with such complex needs and eventually narrowing it down to a shortlist of 4 companies. 

 

I had an initial telephone conversation with someone from each company explaining that my friend was terminally ill, extremely weak and vulnerable and had multiple mental health conditions, which would manifest as behaviours which could be seen as unacceptable in others. She would require very kind, considerate and empathetic care from a small team that she could get to know and feel comfortable with. She would struggle with having people in her home, letting them carry out tasks for her and would be embarrassed about what she was wanting them to do as she needed her rituals and routines carried out for her to feel comfortable, now that she wasn’t able to do them herself.

 

Each company listened and said that they would be able to provide care for her, that they understood the challenges that this would involve and that they had carers in mind who would be suitable for the role. One company even said that it would be happy to recruit someone specifically for the position with mental health experience, or provide training to up-skill anyone who joined her care team. I felt reassured, as did my friend, and we decided on two companies to speak to in more depth before eventually appointing one. 

 

For this stage in the process, a representative from each of the two companies visited my friend’s home. One representative was early which caused my friend to panic and she felt unable to let them into the house. Once I had arrived and spent some time chatting with her, she felt calm enough to continue with the meeting. 

 

For each meeting we went into more detail regarding her mental health conditions, as well as her physical deterioration. We devised a list of jobs that she would like them to do each day to satisfy her OCD, as well as personal care and occasional everyday tasks such as helping her with her post, emails and general organisation (as her cognition had also declined at this point).

 

Each company assured us that they had carers who were able to manage the tasks, communicate with my friend in a way that made her feel safe and who were able to interpret her needs when she was unable to articulate them. 

 

When it came to appointing the chosen company, we did so based on the representative she felt most secure talking to and subsequently a care package was arranged.

 

During the process we explained in detail what my friend would need the care companies to do and be aware of and why. For example, we explained that cleaning the toilet with a toothbrush was necessary for her mental health, that she was unable to cope with a visitor being early or late, that she would panic if she felt that they were irritated or annoyed with her and that they would have to make her feel safe and comfortable for her to accept the care. 

 

We explained that letting people into her home was a huge adjustment for her because she was so ashamed of her behaviours, routines and systems, and we reinforced the importance of not deviating from agreed plans. We explained that she would become anxious, upset, defensive and scared in unexpected situations. We stated that they needed to speak to her kindly, to double check that she was ok and try to interpret her body language to ensure that the tasks were being done in a way that made her feel safe and happy. If she didn’t feel safe or satisfied with the tasks that had been completed then she would be unable to ask for what she needed and would feel judged, forcing her to hide her behaviours and routines - perhaps carrying them out after the carer left to her own physical and mental detriment.

 

I felt that we had done all that we could to prepare the company. We went into lots of detail about her health and the impact that it had on her, spent time being introduced to the carers who would be working with her and preparing lists and discussing ways of communicating her needs, within the restrictions of her mental health. I am not sure what the care company thought of all of this. Sometimes it felt as if they were simply agreeing with us to get the job, but we had to trust that they would be able to implement the correct care to support my friend through to the end of her life.

 

Initially things seemed to go well. My friend connected well with the care team that were allocated to her, she continued to discuss her conditions and tried to educate them on the many invisible illnesses that she lived with. However, there were some conditions that she was unable to talk about. 

 

Her OCD and eating disorders were buried in shame and anything to do with food or her kitchen was a minefield of stress and anxiety for her. This was where the empathy, effective listening and learning about her and her behaviours was meant to come into the equation. I expected the carers to learn her “tells” as I had, to question her kindly if she was being evasive, listen without judgement and then cook her 10 fried eggs without comment or any facial indication that this was unusual or possibly unacceptable. However, this was something that each of the companies struggled with.

 

Having care withdrawn

 

Unfortunately, the main carer allocated by the first company that we employed left the business. This happened over the Christmas period, which made sourcing a new care company much more challenging due to the holidays. As a result, my friend was ultimately without care for about a month until we managed to establish a new package.

 

Having care withdrawn had a huge impact on my friend and her mental health. She felt that it was her fault that they couldn’t provide care for her anymore. She worried about being “hard work” and unreasonable in her requests and expectations. I tried to reassure her that whatever she needed was acceptable, but her shame and guilt were overwhelming and when the new care company started, she was much less able to make requests, explain her needs and assert herself with the carers.

 

This concerned me – I worried that she might be being taken advantage of or mistreated slightly. When I went to visit her, the carers would be completing the agreed tasks, but my friend was telling me that they were complaining about doing so. Because of this, my friend had told them not to bother with some of the tasks and she ended up doing them herself after they left.

 

I appreciate that asking someone to clean the hinges on a toilet with a toothbrush everyday can seem excessive, obsessive and unreasonable, however, although not being a standard cleaning job, this was necessary to manage her OCD and the subsequent distress that it caused. Without it being completed she was unable to relax. She experienced anxiety to the point where she had to do it herself, along with other cleaning tasks, which left her exhausted and unable to function. 

 

She was also feeling emotionally drained through her inability to self-advocate. This was all at the detriment to her quality of life. She was unable to leave the house, had no energy for visits from friends and family and was unable to complete her volunteering work, which gave her a great deal of comfort, enjoyment and self-worth.

 

This frustrated me to the point of wanting to contact the care company myself, manage the situation and ensure that the carers assigned to my friend had more training and experience of working with people with severe mental health conditions. However, my friend did not want me to do so, as she felt that if I contacted the company then they may remove her care, due to her being demanding and unreasonable. I tried to reassure her that this should not be the case, but her fears and need for care were too much for her to see how my involvement could improve her situation.

 

So, when the second company informed her that they were unable to meet her care needs any longer, she was gripped with anxiety, and I struggled to persuade her to recruit a third company. Her feelings of being unacceptable, having unreasonable needs and being “hard work” took over and she was unable to articulate her needs at all. Finally, she accepted that she was unable to complete even basic self-care and therefore needed carers, so we began our search for a new company.

 

We created a spreadsheet of tasks for the new carers to complete, and my friend spent time getting to know them and building a rapport, but she was still unable to adequately express her needs and continued to carry out tasks herself after the new carers had left.

 

What would have helped?

 

Unfortunately, in our case, the reality was that the carers were unprepared to manage my friend’s needs and behaviours effectively. On some occasions they hadn’t even been informed of her conditions and how they affected her. 

 

What I feel would have helped in this situation:

 

• For the company bidding for the work to be realistic about what they were able to manage
• Increased training on mental health conditions and the consequences of not carrying out tasks to the agreed standard, when a client has a condition such as OCD
• Having regular reviews with the client and their informal carers (i.e., friends like me) to determine if there are any issues which have not been addressed related to the complexities of certain mental health conditions 

 

Overall, I think that the carers tried their best, but they were not adequately trained to provide the right levels of patience and empathy. Additionally, communications between the care co-ordinators and the carers themselves were inconsistent. 

 

Competencies and behaviours that would have helped

 

• Reassurance that what is being asked is acceptable
• Being able to manage and/or mask frustrations or irritation
• Attention to detail when completing tasks which impact the client’s mental health (e.g. OCD rituals)
• Patience
• Empathy 

 

Ultimately, my friend was experiencing her symptoms in a very different way to how she was used to, as she was now reliant on other people to complete the rituals that she had been doing for years. Simply having people in her home was a huge upheaval, both in terms of her mental health conditions and having to accept that she had deteriorated physically to the point that she was unable to care for herself anymore. 

 

She was also feeling vulnerable due to her terminal diagnosis and becoming visibly disabled and accepting help as a previously independent woman in her 50’s was also challenging for her. Because of this, my friends’ fears and anxiety were overwhelming her towards the end of her life, negatively impacting the time she had left.

 

The benefits of care

 

When care packages work well, they are beneficial in many ways – and indeed, when my friend’s carers were good, her life became more positive and fulfilling. Having the burden of completing physical tasks around the house removed meant that she was able to socialise and participate in voluntary work for much longer. Having people support her self-care made her feel more human, more like herself and more able to face other people without worrying as much about her appearance as she physically deteriorated. The companionship of getting to know some of the carers and being able to talk to them on a personal level also gave her a sense of worth in the midst of her mental health challenges. 

 

How to support yourself when you’re supporting someone with complex needs

 

I found interacting with my friend towards the end of her life extremely draining. She required constant reassurance, was panicky about any change or difference in routines, behaviours or interactions, no matter how small. She became paranoid and second guessed everything, worrying that people would judge and dislike her. I can see how this would have impacted her carers as well as me and I found that the following things helped me to manage my own self-care, while providing support to my friend:

• Taking time away from your client/loved one to relax and recharge.

• Being realistic about how much you can manage in terms of the amount of energy required to support someone with complex needs and plan their care accordingly, without taking on all of the responsibility yourself.

• Do some fun activities with them as well as the more mundane daily tasks. This can take them out of their fears and enable them to feel “normal” for a while altering their behaviours and possibly needing less reassurance.

• Learning more about the client/loved one, where their fears and anxieties stem from, what strategies they use to help themselves and how you can help can reduce the level of stress you may experience during a visit if you are not continually assessing what you are saying and doing.

• Trying to learn your clients’ anxiety or fear behaviours so that you can identify them and be able to calm them quickly will enable you to reduce time spent on navigating challenging behaviours.

• Speak to friends and family of your client and ask what behaviours they notice, or strategies that they use to calm and reassure the client. This will reduce the strain on you to identify behaviours and develop coping strategies.

 

 

In summary

 

Overall, I think the main problem my friend and I experienced stemmed from our early conversations with the care companies and their over-confidence in being able to manage such complex needs. While care providers might be bidding for business and working to targets, not being realistic about what they could manage had a significantly detrimental impact on my friend who went without care after they were forced to terminate the service. This not only had a negative effect on my friend’s mental health, but it also created more stress for me as I had to complete another round of searching, interviewing and explaining her needs to more companies. 

 

I also believe that there should be more training and support available for carers who are working with clients with complex needs to effectively care for them within the short visits and structured packages that are available. 

 

Knowledge, experience and understanding are the key themes that I believe both professional and informal carers can benefit from, in turn benefiting their clients or loved ones. As such, anybody who is interested in finding out more about the types of courses and training available can visit NCFE’s website: https://www.ncfe.org.uk/sector-specialisms/social-care/ 

 

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