For my possible future “Adaptable DEI” business: on being an informal carer and a worker

This was prepared with permission for a workplace presentation on “lessons learned” from a situation where a senior employee of a professional consulting organisation became a care for their partner during a situation of prolonged medical treatment.

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On Being an Informal Carer and a Worker

Context

The context of this article is based on a situation where a staff member’s (“employee’s”, for this article) loved one (“partner”, for this article) was diagnosed with cancer: the article is based on the employee’s experience of supporting their partner, and has been written with a view to sharing the lessons the employee and the company learned.

It should be noted that others’ experiences of similar situations may not involve these outcomes – this article is by no means universal, and is based on working in an office-based profession: other forms of work will have their own challenges – many, for instance, do not have the option of working from home (WFH). This article will not try to address those forms of work.

Given those qualifications, it is worth noting:

• Other situations could be similar – e.g., diagnoses of other major illnesses, those who have experienced major accidents, victims of major crime (such as assault), etc.;
• These situations could occur either to employees, or to any person the employee is close to – which is not necessarily a close family member.

Also, this article will not consider normal care for children, nor (most of) the care of elderly family members. Those demands are ongoing, and may overlap with what has been written, but the aspect of immediate shock won’t be present for normal, routine, day to day care.

This article will consider the impacts and needs of this event on the employee, and work, in the following time frames:

• Immediate term (first few days);
• Short term (first few weeks);
• Medium term (several months);
• Long term (year or longer).
  

Immediate (first few days) impacts

Shock

Major illnesses can come out of the blue – for instance, the author was diagnosed as diabetic near the end of a two year campaign to prepare for an international sailing competition that involved running 7 km four or five times a week and two or three one to two hour long strength sessions each week (and plenty of sailing).

The same happened with the cancer diagnosis that led to this article: the diagnosis came when the employee’s partner’s health was otherwise excellent (which was fortuitous, as it helped with the rigours of the treatment), and the person concerned was looking forward to an imminent post-graduate course.

However, even if a person’s health is not good, the confirmation of a diagnosis can still come as a shock – or may cause despair.

During the first few days after that diagnosis (or accident, if it is that):

• The focus of the employee will be on the affected person and their needs;
• As a result of the changed focus, the employee’s ability to work is likely to be reduced – possibly including, during these first few days, their ability to formally brief others about work.
  

Medical needs of patient

The medical needs of the employee’s partner will depend on the circumstances.

In the case being considered, it involved chemotherapy, which can have a major impact:

• The immune system is impaired – effectively, close to completely inactivated, leading to a need for infection control that is similar to that required for a transplant recipient.
  In this case, the measures adopted were informed by the partner’s knowledge and experience from years of work as a registered nurse (RN), prior to receiving a degree qualification.

• The actions adopted were based on best practice, rather than waiting for evidence of a problem – at which point it may already be too late to take effective action.
  Waiting for the partner to, for example, get a cold and wind up in ICU was a ridiculous notion, so measures were adopted in advance of that possibility which would help prevent infection.
  Those measures included:

• Wearing masks and gloves when household members went out.
  The widespread washing of hands and awareness of the need to control infection transmission during the pandemic allowed the household to stop using gloves, but masks remained a necessity – and would have even without the pandemic;
• Avoiding the risk of becoming ill – and, again, the improved infection control practices at work as a result of the pandemic helped.
  In this instance, there were, however, some people at work who, before the pandemic, aggressively insisted they should attend work while ill – fairly seriously ill, in one case. In those cases, the employee was able to speak to the person’s manager, and have the ill person relocated to an isolated desk.
• The employee disinfected the surfaces of the house that were contacted by hands (door knobs, cupboard handles, key pads, remotes, jug handles, etc.) almost every day for four years.
  This came about as a result of discussions about infection control and “deep cleans”. In this, the employee was aided by the partner’s knowledge: since then, other family members of the employee (in other states) who have found themselves in similar circumstances were informed by the employee about this activity, as their treating medical people hadn’t.
  Initially, the longest part of doing this – which involved wiping the surfaces with disinfectant wipes, on top of normal house cleaning to manage dust etc – was recognising what surfaces were being touched. Once the employee had got used to that, they could do the clean in 20 to 30 minutes.

• Looking after physical health to the extent that is possible. Making the effort to continue doing regular physical exercise and eating well was important. These had been present before the diagnosis, but the effects of the chemo made doing them quite difficult.
• There are medical aspects of the chemotherapy (such as cytotoxicity) which medical experts need to talk about.
  That will be provided by the hospital (here in Australia, at any rate). 
• The partner has a right to have their privacy respected – morally, legally, and for good business-employee relations, which will limit the extent of information the business gets on details of the partner’s medical condition and treatment. 
  

In addition, the employee and partner were given connections to specialist support groups by the hospital.

Hospitals also have social workers who can provide support and advice on resources – such as permits to reduce the (extremely high) cost of car parking.

A surprising area of support was the multi-denominational/non-denomination chaplain. The employee and partner were members of a minority religion, and had had bad experiences in the past from some very judgemental, hardline religious chaplains, but the chaplain at the hospital the partner was at wasn’t problematic – and was keen to learn of a new (to them) religion.

This is one of the DEI issues that hospitals must take into consideration when planning their provision of services: people have different religions, as well as a wide range of sexualities/family arrangements, cultural requirements, etc.

If the hospitals fail to adequately allow for those ranges of personal characteristics, it may create additional problems for the hypothetical employee of this article, and thus indirectly becomes a DEI issue for the company the employee works for - as the employee’s capacity to work will be reduced by both the experiences their partner is undergoing and the discrimination/abuse they are personally being subjected to.

In the case being considered, some hospital staff had failings around transgender inclusion. Those were raised with the hospital by the employee, although the response was … tepid, but near enough to let go, given the need to focus on other matters.

Incidentally, the author has, as a result of similar DEI failings in medical situations, a profound personal wariness of hospitals.

Hospitals need to understand that, irrespective of laws and personal biases of any of their staff, being good at implementing DEI is essential to ensuring truly professional provision of health care to the whole patient – which includes enabling patients to be able to freely access and receive support from loved ones who may otherwise be excluded by lack of, or incompetent attempts at, DEI.

DEI problems could potentially arise out of any attribute – for instance, race, culture, sexuality and/or gender identity, gender, etc., and may not be formally raised with the hospital. Nevertheless, DEI failures, whether the subject of a complaint or not, may impact whether patients return for further treatment.

Personal needs of employee

The employee’s needs at this stage are:

• Having adequate time, energy and focus to support the partner – which is provided by reallocation/deferral of work and leave arrangements on the part of the business;
• Finding out what would happen medically (time for tests, diagnoses, medical decisions, etc.), which comes from medical experts; and
• The commencement of adjusting to a new life circumstance – which is met by the individual, based on their capacity to adjust, which may require assistance.
  

Business needs

The business’s needs are:

• People to take over affected work;
• Possibly appropriate messaging to clients whose work is urgent where others cannot take over, or where the change of staff is significant.
  

Lessons

• For the employee:

• Ideally, have reasonably up to date notes for others (which may be difficult to do because of workload);
• Always remember that life can have surprises, and de prepared emotionally and mentally to be flexible and adapt when necessary;

• For the business:

• When planning resource needs, always remember that people may become unavailable through no fault of theirs or anyone else’s;
• Prepared or adaptive business messaging:

• To employee: go do what you need, let us know how is going;
• To clients (if needed): something has cropped up, may be some disruption, currently assessing and will adapt if necessary. 
•  Remember to respect the partner’s privacy. 
  

Short term (first few weeks) impacts

Adaptation

In the case being examined, the employee and partner knew from the start that the treatment and recovery were going to take months. That’s not always the case: it can sometimes take time for the medical profession to identify all aspects of a medical condition – and taking the time required to work through all the necessary stages of the diagnosis procedure is vital.

But for anything that is going to be longer than a week or so, the next stage will involve significant adaptation of life.

Where this involves time for the partner in hospital:

• The employee will have to rearrange work schedules so as to be available during visiting hours;
• Hospitals are not set up to take care of matters such as clothes washing, so the employee will have to do that – and more of the basic housework, of course.

In this case, the employee would fairly regularly do some work from home during the evenings – including answering to questions by email. This was sometimes frustrated by people wanting to be considerate and thus not sending questions by email, when the employee, at times, appreciated the distraction of having something mundane and not life-threatening to think about.

However, at that time hospitals were implementing WiFi systems, which introduced the possibility of doing work at the hospital - although concern about how secure they were/are, limited what work was done over the public hospital WiFi. In general, work was downloaded to the employee’s lap top that could be worked on without needing Internet access. (This was while waiting for medical procedures, such as marrow samples or giving chemo, to be completed. Trying to be part of meetings was not viable – especially in waiting rooms. )

There can be problems with the medical system:

• The treatment may take longer than originally anticipated, or have worse side effects than anticipated, etc. – or simply not be as effective as hoped for;
• Hospital are run on a tightly controlled budget: thus events can cause last minute changes (sometimes while at the hospital) for valid reasons.
  Examples of such events include problems with a surgery, reactions to medicines, large group of people suffering food poisoning, major accident, etc. (pandemic … ) all of which may necessitate medical procedures being rescheduled or rearranged - through no-one’s fault – to ensure the best overall outcomes.
• Even here in Australia, with a notionally largely pre-funded (whether Medicare or private health insurance) health system, there are additional “hidden” costs (medicines, parking), so being able to continue earning a living is often important;
• The personal touch can be lacking – especially around pain management (bone marrow sampling). This means the partner may need a patient’s advocate: as a former RN, the partner in this case did this themself, but the hospital social worker can also aid on this.
  Notwithstanding whatever patients advocacy is available, running into issues that require this can be almost a body blow – especially when it is around pain management.
• Treating doctors may also underestimate recovery needs. In some cases they are experts in recovery needs – for instance, with joint replacement, but with new procedures, the knowledge may not be available.
  

Medical needs of patient

• Treatment regimens may start to be adapted;
• A patient’s advocate may be necessary, as may access to hospital-based support services;
• Matters such as infection control may occur;
  

Personal needs of employee

• Support for the demands of watching a partner in pain:

• Supplied by friends and professional support. People at work being sympathetic helps, but may need expert help – don’t force that, however. The business may have an employee support scheme, but those available via the hospital are often specialists in the effects (including emotional) of whatever is being treated;
• A patients advocate may be necessary (can be arranged from within the hospital, usually);

• Rearrangement of life to cater for time in hospital, addressing personal matters hospitals don’t (such as clothes washing), additional housework, etc:

• The employee may need to activate support from family & friends, and possibly professional support;
• Some continued work can be beneficial, so encourage other staff to use email communication etc if the employee asks for that;

• Accurate medical information is important: well-meaning but possibly harmful suggestions from other staff should be discouraged.

Business needs

• Understand that the affected employee committing to timelines may be difficult, if not impossible, owing to unpredictable changes that are outside any reasonable chance of control;
• The business can start planning work allocations, as an initial idea of treatment will develop and be confirmed over this period.

Lessons

• Some matters are beyond anyone’s control;
• It is possible to be too considerate – if people want to work, let them, to whatever capacity they can;
• Continuing to work may be necessary for financial reasons;
• Medical treatment is advanced and much better than it was even just a few decades ago, but neither the treatment nor the medical system is perfect, and some advocacy may be necessary;
• Ensure there is no victim blaming in anyone’s thinking.
  

Medium term (several months) impacts:

Persistence

If the situation is continuing for this long, issues that may crop up for the carer include:

• Having to adapt if the treatment regime is changed – treatment could become a progressive plan depending on what happens, causing uncertainty or worry
• Emotions being experienced could become more clearly aligned with the stages of grieving
• Caring actions – such as disinfecting the house – could become wearing, as can the demands of keeping others informed
  

Medical needs of patient

• Treatment regimens will continue to be adapted as determined by the medical experts, and may change to recovery and/or ongoing, long term monitoring (for possible recurrence);
• A patient’s advocate may be necessary (especially around pain relief), as may access to hospital-based support services;
• Matters such as infection control will likely continue;
• Recovery needs after treatment may be more extensive than anticipated;
• The patient will almost certainly be exhausted.
  

Personal needs of employee

The world of the employee is not limited to:   the ill partner   +   work. They will generally also have other family, and family of choice – friends, and their role will become more important.

It is not for the business to provide or meet all the social or support needs of the employee, but it will be essential for the business to enable the carer to interact with and receive support from friends and family – e.g., personal calls during work hours.

During this time, the employee’s needs will likely include:

• Support from friends;
• Possibly professional support – generalised support based on endurance, so not restricted to solely specialised medical-focused support. At this point, a good Employee Assistance Programme may be of value;
• If possible, help with housework;
• Getting in to the office can be a pleasant change – hence stopping work entirely for extended leave may not be beneficial, but this will likely vary from person to person;
• Financial help may become necessary: there are often support schemes accessible via hospitals, but those can be so aggressively intrusive and judgemental that people choose not to access them. Getting extended leave at reduced pay might be helpful, but that must be something that can be applied for when it is found necessary, and not limited to specific times of the year.

The author is aware (e.g., people known to the author entitled to this under Australia’s NDIS) how beneficial getting paid housework for a couple of hours a week can be. There may be fringe benefit tax issues, but a company paying for two hours of housework per week may be the best investment that it can make for the employee’s well-being and possible return as an effective employee.

Business needs

• Long term planning of resource availability will be more definable, and will likely be on a reduced basis, but the end point may not yet be definitive.
  

Lessons

• Employee Assistance Programme needs to be able to cater for prolonged life challenges;
• Access to reduced-pay leave needs to be accessible when needed, and not limited to a specific time of the year;
• Consider paying for two hours of housework per week for the employee (This may also benefit staff experiencing mental health issues– which is, the author thinks, the scenario where such schemes first originated);
• It will still be important to ensure there is no victim blaming in anyone’s thinking.
  

Long term (year or longer) impacts:

Exhaustion

If the regimen is continuing for a year or longer, exhaustion will become a key aspect of the employee’s life.

Exhaustion may contribute to:

• A range of emotional/attitude challenges – which can also occur in some situations of permanent or disability – which are best left to professionals to diagnose and manage. However, the business should be mindful that such issues may occur – without necessarily presaging any major changes. This is simply one more issue to be accepted non-judgmentally and managed;
• Consideration of major life changes may become more prominent in the employee’s thinking – in the case being considered, the feeling was along the lines that, after so long having one’s life dictated by others, a commensurate major change was needed to restore balance and a sense of being in control of one’s life (it is understood that this was not acted on in this instance);
• Depression.

The employee may need – or have greater need of - professional support. This will be aided by colleagues and friends continuing to show an accepting, non-judgemental attitude, and the company continuing to be as flexible as is possible.

Another aspect that will be relevant is any continuing professional development (CPD) needs – which may have arisen after a few months. Given the medical demands of being a carer, and the need to maintain an adequate income, it may be unlikely that the employee can qualify for a “career break”. However, many CPD requirements can be met by self-directed online learning -e.g., watching recorded webinars in the evening.

Other medically-based matters may also need to be managed, including:

• Coming to terms with:

• the risk that the treatment regimen may not work, or may need to be changed;
• the possibility of permanent incapacitation or death;
• while it is still important to continue following expert advice, use patient’s advocate to ensure questions are properly considered and answered

• Medical recovery needs.

The patient will also be far more exhausted than the employee.

Medical needs of patient

• Treatment regimens will continue to be adapted as determined by the medical experts, and will at some stage change to recovery and/or ongoing, long term monitoring (for possible recurrence);
• A patient’s advocate may still be necessary (especially around pain relief), as may access to hospital-based support services;
• Matters such as infection control will likely continue until treatment ends;
• The patient will be exhausted;
• The patient may need to come to terms with:

• the risk that the treatment regimen may not work, or may need to be changed;
• the possibility of permanent incapacitation or death;
• while it is still important to continue following expert advice, use patient’s advocate to ensure questions are properly considered and answered

• Recovery needs after treatment may be more extensive than anticipated;
  

Personal needs of employee

• Exhaustion will have impacts, and may require assistance:

• With attitudes – should be primarily from professionals, but colleagues and friends continuing to show an accepting, non-judgemental attitude will also be important;
• With housework – a couple of paid hours of help may be useful;

• Depression may require professional assistance - and an accepting, non-judgemental attitude from friends and colleagues;
• Meeting CPD needs of their profession will be difficult (may need to be online in evenings);

It is considered that there is opportunity for professional CPD schemes to benefit from consideration of situations such as this.

Business needs

• Long term planning of resource availability – may be reduced or altered (may choose a change of career)
• CPD of employee – may not fit definition of career break

 Lessons

• For the employee:

• avoiding excessive support demands on just a few friends;
• be prepared for the desire to reconsider life direction;

• For the business:

• continuing to show an accepting, non-judgemental attitude;
• consider ways to assist with CPD of the employee;

• Professional organisations:

• Consider the needs of medical carers who are also working when defining “career break”.

 

 

Summary: Individual and Business Needs for Employees Who Become An Informal Carer

This is based on professional work for which WFH is a viable option, and becoming a carer for medical reasons for a partner (loved one). It is not intended to cover all situations, and specifically excludes matters such as routine care for children, the elderly, etc., but does consider needs for medical care arising from unexpected diagnoses of major illnesses, major accidents, victims of major crime, etc.

Immediate (first few days) impacts

This stage will often be characterised by shock - to a varying degree depending on the people and circumstances involved.

Medical needs of patient

• Will largely be determined (advised) by medical experts;
• May be a need for matters such as infection control (other household members wearing masks in public, disinfecting household surfaces, etc.);
• Hospitals often have support services, but need to ensure they are properly implementing DEI for patients and the patients’ loved ones;

Personal needs of employee

• Having adequate time, energy and focus to support the partner;
• Finding out what would happen medically from medical experts; and
• The commencement of adjusting to a new life circumstance.

Business needs

• People to take over affected work;
• Possibly appropriate messaging to clients whose work is urgent where others cannot take over, or where the change of staff is significant. 
• Remember to respect the partner’s privacy. 
  

Lessons

• For the employee:

• Ideally, have reasonably up to date notes for others (if possible);
• Always remember that life can have surprises, and de prepared emotionally and mentally to be flexible and adapt when necessary;

• For the business:

• When planning resource needs, always remember that people may become unavailable through no fault of theirs or anyone else’s;
• Prepared or adaptive business messaging:

• To employee: go do what you need, let us know how is going;
• To clients (if needed): something has cropped up, may be some disruption, currently assessing and will adapt if necessary;

• Ensure there is no victim blaming in anyone’s thinking; 
• Remember to respect the partner’s privacy.

• For hospitals:

• Ensure your DEI is truly effective and implemented by all staff and third parties engaged by the hospital;
• Ensure patients and their loved ones know of, and have free and adequate access to patient’s advocates, social workers, support schemes, and the like.

 

Short term (first few weeks) impacts

The period can be characterised as a time of adaptation.

Medical needs of patient

• Treatment regimens may start to be adapted;
• A patient’s advocate may be necessary, as may access to hospital-based support services;
• Matters such as infection control;

Personal needs of employee

• Support for the demands of watching a partner in pain, met by a combination friends and professional support. People at work being sympathetic helps, but may need expert help – don’t force that, however. The business may have an employee support scheme, but those available via the hospital are often specialists in the effects (including emotional) of whatever is being treated.

• A patient’s advocate may be necessary (can be arranged from within the hospital, usually);

• Rearrangement of life to cater for time in hospital, addressing personal matters hospitals don’t (such as clothes washing), additional housework, etc:

• The employee may need to activate support from family & friends, and possibly professional support;
• Some continued work can be beneficial, so encourage other staff to use email communication etc. if the employee asks for that;

• Accurate medical information is important: well-meaning but possibly harmful suggestions from other staff should be discouraged.

Business needs

• Understand that the affected employee committing to timelines may be difficult, if not impossible, owing to unpredictable but essential (justifiable) changes that are outside any reasonable chance of control in complex medical care situations;
• The business can start planning work allocations, as an initial idea of treatment will develop and be confirmed over this period.

Lessons

• For all:

• some matters are beyond anyone’s control;

• For the patient:

• Medical treatment is advanced and much better than it was even just a few decades ago, but neither the treatment nor the medical system is perfect, and some advocacy may be necessary.

• For the employee:

• it is possible to be too considerate – if people want to work, let them, to whatever capacity they can;

• For the business:

• the employee continuing to work may be necessary for financial reasons;

 

Medium term (several months) impacts:

The period can be characterised as a time requiring unavoidable persistence.

Medical needs of patient

• Treatment regimens will continue to be adapted as determined by the medical experts, and may change to recovery and/or ongoing, long term monitoring (for possible recurrence);
• A patient’s advocate may be necessary (especially around pain relief), as may access to hospital-based support services;
• Matters such as infection control will likely continue;
• Recovery needs after treatment may be more extensive than anticipated;
• The patient may well be exhausted.

Personal needs of employee

• Support from friends, and possibly professional support –a good Employee Assistance Programme may be of value;
• If possible, help with housework;
• Getting in to the office can be a pleasant change;
• Possibly access to extended leave at reduced pay might be helpful, but that must be something that can be applied for when it is found necessary, and not only at particular times of the year.

Business needs

• Long term planning of resource availability will be more definable, and will likely be on a reduced basis, but the end point may not yet be definitive.

Lessons

• For the employee:

• seek and accept support from friends, and possibly professional support;
• getting in to the office can be a pleasant change;

• For the business:

• Employee Assistance Programme need to be able to cater for prolonged life challenges;
• Access to reduced-pay leave needs to be accessible when needed;
• Consider paying for two hours of housework per week for the employee. (This may also benefit staff experiencing depression – which may be the scenario where such schemes first originated.)

 

Long term (year or longer) impacts:

This period can be characterised as a time of exhaustion.

Medical needs of patient

• Treatment regimens will continue to be adapted as determined by the medical experts. The patient may need to come to terms with:

• the risk that the treatment regimen may not work, or may need to be changed;
• the possibility of permanent incapacitation or death;
• recovery needs after treatment may be more extensive than anticipated;

• A patient’s advocate may still be necessary (especially around pain relief), as may access to hospital-based support services;
• Matters such as infection control will likely continue until treatment ends;
• The patient will likely be exhausted.

Personal needs of employee

• Exhaustion may have impacts, and require assistance:

• With attitudes – should be primarily from professionals, but colleagues and friends continuing to show an accepting, non-judgemental attitude will also be important;
• With housework – a couple of paid hours of help may be useful;

• Depression may require professional assistance - and an accepting, non-judgemental attitude from friends and colleagues;
• Meeting CPD needs of their profession (may need to be online in evenings).

Business needs

• Long term planning of resource availability – may be reduced or altered (may choose a change of career);
• CPD of employee – may not fit definition of career break.

Lessons

• For the employee:

• avoiding excessive support demands on just a few friends;
• be prepared for the desire to reconsider life direction;

• For the business:

• continuing to show an accepting, non-judgemental attitude;
• consider ways to assist with CPD of the employee;

• Professional organisations:

• Consider the needs of professionals who are also informal medical carers and are also working when defining “career break”.
  

 

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