A Working Relationship
It is striking how adept carers and individuals are at establishing a “working rela- tionship” with their speci fi c neurological condition in which small unwelcome changes become part of daily routines.
“ It seems this disease is one long series of small losses, tiny changes from day to day that you don’t always notice, but then when you look back at what life was like a year ago or fi ve years ago, suddenly the change and the loss can seem huge. ” [ 6 ]
Any change of pace is unsettling, even a really positive one like going from MS relapse into remission carries uncertainty about how long improvement will last.
However, most changes in neurological conditions are synonymous with progres- sion and occur in different ways at any time between diagnosis and death, varying in intensity, speed, and impact.
Rapid progression or relentless decline creates a fl uid situation. Carers may never have imagined how such suffering could be endured let alone witness it ever hap- pening to someone they care for and love. Spontaneous recollections of the raw impact of progression may echo on, unresolved for those who cared.
A teenage son remembers “ the fi rst day of a vicious attack my mother had ” and
“ the shock of what was happening. The confusion and guilt instantly sank in and left me feeling, at times, almost isolated and afraid of the future – her recovery wasn’t certain ” [ 11 ] .
When lives become disjointed by disease, care needs increase. With patients increasingly at risk, carers face greater vulnerability in caring. What was previously manageable becomes too complex to cope with alone and challenges professionals to “engage fully with carers as co-experts in care delivery” [ 12 ] .
“ She needs round the clock attention now, and I am determined that is what she will get, but at what cost to me? ” [ 6 ]
Clearly the top priorities are to stabilize patients and support carers.
Caring for people with neurological conditions is never straightforward, and car- ers’ stress levels rise the more progressive or complex the condition becomes. In addi- tion to physical symptoms like pain, incontinence, and mobility, there are often problems with communication as well as disease-speci fi c losses, many of them
multiple. The unpredictable element that typi fi es neurological conditions is unnerv- ing. Although carers know “ it is the disease that is changing him/her …” [ 3 ] , the real- ity of constantly living alongside it can cause distress and grind carers down. This is particularly true when faced with cognitive dysfunction, passivity, depression, behav- ioral problems with aggression, or certain dementias that leave patients to “slowly deteriorate to a point where there can be little or no meaningful exchange” [ 13 ] .
Coping with neurological disease is also demanding psychologically with ques- tions like “why me?”, emotionally with feelings of sadness over losses, fears for the future or anger from frustration, and socially because of isolation and not fi tting in.
There is also a spiritual dimension to do with meaning and transcendence, and what exists to anchor and support at such times. Throughout it all uncertainties abound about what to expect next and how to manage.
Progression
The impact of a change of pace is obvious from watching what happens to the patient. It may be a close call in the case of sudden and rapid progression, an emer- gency admission to hospital or hospice, or an intervention to manage the cumulative effects of slow progression, especially if aggravated by a common infection.
Negative and unwelcome, the effects on the health and well-being of patients deserve total care – body, soul, and spirit. Health and social care professionals need training, skills, and practice in caring for patients with chronic conditions who develop acute medical needs and to be up to speed with medical ethics to guide best practice. Unfortunately not all professionals have adequate experience of long-term neurological conditions, which is a serious concern. [ 14 ]
Progressive episodes often leave patients and carers reeling from “irrecoverably shattering experiences” [ 15 ] , the consequences of which may reverberate. For instance, the patient care load may be doubled, and the carer may be left with inad- equate support. It is wise not to underestimate how shaken carers often are after witnessing the powerful effects of progression. The worst-case scenario is a sort of downhill slide as carers struggle to come to terms with the fact that although they have given of their best, nothing can avert the course of the disease. Experiencing the reality of progression evokes emotional responses that threaten to overwhelm in ways that neurological facts rarely do. At the same time carers usually become physically exhausted from relentless increases in burdens of caring, which can leave patient and carer feeling isolated. Yet, resilience, combined with strong bonds of relationship, may enable carers to carry on beyond their normal capabilities.
Although caring for carers is good practice, it may not always occur in reality as carers are not top priority, the care they need is seldom a medical emergency, and they may not recognize they need support at the time as:
An understandable and inevitable consequence of struggling on single-handedly
•
Some may have asked for support and not received it, and perhaps their request
•
has not even been heard
Others refused support because they felt they were managing
•
Others would welcome support but were held back by patients who did not see
•
the necessity of having outside intervention Support for carers needs funding
•
Giving appropriate support takes time and demands a mixture of approaches from people who are well-trained, insightful, and most importantly caring and trustworthy.
Reviewing the Situation
Whenever neurological conditions progress and lives become further disjointed and interrupted, there needs to be a greater overlap of caring between patients, their car- ers, and health and social care professionals. “Best practice” care is about being proactive and supportive. To do this successfully calls for the expertise and resources of a full complement of professionals from different disciplines of health and social care, and palliative care especially, in order to work together as a multidisciplinary team – see Chap. 6 .
Once the patient is stabilized, reassessment is needed, not limited to matters of health but including a complete overview of the situation. Sometimes medical treatment to relieve distressing symptoms, for example, is easier to achieve than other areas of concern that affect quality of life for patient and carer. Assessment is not merely a fact- fi nding exercise, particularly in the aftermath of progression:
more an opportunity for an act of caring, with the promise of more to come. Simply being there, able to listen and absorb calmly, takes the sting out of distressing experiences, and is one way to demonstrate support. Patients and carers need time to mull over the implications of current experiences of “their” neurological condi- tion. Total care in action assumes responsibility for many kinds of patient and carer needs.
Experienced health and social care professionals know the sort of pathways that lie ahead and the bene fi ts of considering possible options in order to be better pre- pared. Conversations that touch on how people feel, their hopes and fears, suffering and meaning, and spiritual support take on new signi fi cance toward end of life.
Everyone reacts differently to experiences of loss, how to recognize and face them, and fi nd a way through. People often assume that talking about the future will be dif fi cult and uncomfortable and are surprised when conversations seem to happen almost spontaneously and leave them feeling relieved.
Acknowledging the Burdens of Care
Caring for a member of the family, friend, or neighbor is a voluntary arrangement, normally made by choice and possibly already in place before diagnosis, so caring
for someone with a long-term condition becomes a serious commitment. In prac- tice, “long term” varies according to the condition. The average life expectancy for people with neurological conditions ranges from under 2 years with MND through to near normal for many with Parkinson’s disease or relapsing and remitting MS, who may never know that their condition could affect their lifespan. Average life expectancy is a rough and ready guide, fraught with exceptions and constant uncer- tainty. So long-term caring can prove burdensome, especially if it lasts decades, involves cognitive and behavioral changes, and the carers are aging themselves.
Facts about carer burden speak for themselves. However much caregivers want to care, they may become worn down by trying to cope around the clock. In one study, 95 % of carers experienced constant strain, 92 % lost sleep because of worry, and 84 % reported feeling unhappy and depressed [ 2 ] . “Compassion and support fatigue”
builds up, leaving many carers too exhausted to carry responsibilities for care and likely to opt out [ 13 ] . Carers generally experience lower than normal levels of qual- ity of life and physical health, with even poorer levels of mental health linked with distress and depression. These can exceed the threshold for mental health disorders in situations where those cared for have dementia and behavioral problems and refuse to cooperate with carers [ 2, 15 ] . Little wonder that relationships are eroded.
“ There may be a warm breathing body, but the personality of the one with terminal disease seems absent: I lost him/her years ago. ” [ 9 ]
Practicalities, Support, and Advance Planning
It sounds straightforward to “put one’s house in order,” but it takes time, involves careful organization, and some heart-searching.
“ When I was diagnosed, I said to my wife, ‘whatever happens we’ll fi nd a way of coping’. I still believe we can, from a practical point of view, but I never realised that it would be so dif fi cult psychologically. ” [ 6 ]
It is standard good practice to encourage everyone – patient and carer – to make a will, keep fi nances in order, and have personal papers and documents readily available so that someone else can take over easily. Achieving this brings peace of mind.
Many carers take a pragmatic approach to planning care. They know what ser- vices and support they need to care well and what happens when they are unable to access them. Those who are con fi dent about managing care at home would still welcome greater backup support and investment in contingency planning. In par- ticular, carers want to avoid hospital admissions, welcome hotline help, and getting support at short notice for highly dependent people. [ 2 ]
Carers rarely have any choice over what caring role they take on or type of care they have to provide, whatever their circumstances at home. Securing support for children and other dependent family members eases the load. As care becomes more demanding, the most important unmet need of time away from home becomes more
dif fi cult to arrange. There may be opposition from the person being cared for, the carer’s own reluctance over letting others take over, or dependency issues. Carers from different cultural and faith backgrounds often have speci fi c concerns. [ 2 ]
Carers experience great relief when they do share the challenges and load of car- ing. Contact with other carers on Internet forums, by telephone, or face to face in carers’ groups can be amazingly supportive. The weight of constant practical caring can be lifted by negotiating alternative care, such as professional care at home, or where the individual is moved into a care home, hospice, or hospital as appropriate.
If the transition is left too late, carers will be overexhausted to negotiate it smoothly.
Whenever people are cared for temporarily or permanently in other settings, carers’
roles change. Caring becomes more about overseeing and taking responsibility for their loved ones to get good care.
Letting go of “hands-on” caring will seem like a loss to some carers and a great relief to others. It allows carers opportunities to recover their strength and renew relationships with family and friends that will be supportive. The best outcome is when carers have more time and relaxation. The presence and touch of a carer no longer troubled by burdens, stress, and strain may be a balm to the patient and pro- vide anchorage. Personal relationships may deepen and be enriched by closeness, a shared history, and strong emotional attachments, the reality of which is familiar and comforting. Equally, patients may be angry about being “sidelined,” adding a level of guilt for stressed carers, which may be eased by the tactful intervention of professionals.
Advance care planning differs from general planning because it anticipates the possibility that a person’s health may deteriorate in future (see Chap. 9 ). Often it is patients themselves, perhaps together with carers, who send out clues suggesting it is something they want to talk about – “At the end of my life…” or “I’ve been think- ing that I’d like to be cared for in…” Carers are often party to such discussions. It really depends on the patients. It is a very positive step to take and share with those most closely affected.
Loss
Experiencing loss has the potential to erode or enrich. Carers have fi rsthand experi- ence of how neurological conditions create losses, some more bearable than others.
Coping with loss of health depends on what care is on offer, background, personal- ity and experience, previous circumstances, outlook, and spirituality. Each individ- ual is likely to have a hierarchy of losses most feared. Loss of health may trigger a series of other losses that commonly affect self-con fi dence, relationships, work, and social life.
Carers face their own losses, too, especially when they are no longer seen as spouse, partner, or lover but simply as carers. Losses may be expressed with sad- ness, a normal and healthy reaction, or its fl ipside emotion, anger. How losses are grieved over varies from person to person, on the circumstances surrounding the
loss, and cultural expectations. Losses can affect health negatively and are associ- ated with poor appetite, disturbed sleep, despondency, and depression, all of which are well-recognized problems that many carers struggle with. Yet there are “oppor- tunities for growth, healing and support for both patient and family . . . even while they are coping with countless dif fi culties and sorrows as the patient’s disease pro- gresses” [ 9 ] .
One such opportunity is “bereavement needs assessment,” which aims to mini- mize the risks associated with loss and prioritize support for people who are vulner- able. [ 16 ] Some people respond to loss in strongly emotional ways that overwhelm, feel their distress will never go away and that life will never be the same again.
Others face loss with emotions fi rmly under control and get on with life in clearly considered pragmatic ways. Coping well requires a resilient approach that balances emotional, social, and practical responses to loss. Unlike denial, resilience is about facing the real impact of loss, expressing appropriate emotional reactions in safe ways, attending to practicalities, and seeking consolation from caring and support- ive relationships. As people differ in what inner resources they have to cope, it is vital that care professionals do not leave vulnerable carers to manage alone.
Exploring with carers what support will help – practical, social, psychological, and/
or spiritual – provides bene fi ts all round. Support and af fi rmation enable people to acquire coping skills and develop resilience to stand them in good stead for the future.
Anticipatory Grief
This is not an uncommon fl eeting thought in everyday life and may happen sponta- neously to anyone. Patients, carers, family, and friends may experience anticipatory grief, alone or together, and sometimes long before death comes, like a rehearsal. It is often triggered by awareness of deterioration or progression in the patient’s con- dition. At such times, people tend to talk more openly about what is happening and re fl ect on journeys of many losses, past, present, and future, including their own.
Letting anticipatory grieving just “be” and moving on when ready seems most appropriate. It is one way of taking stock and being prepared for the inevitability of death for everyone. It neither hastens nor delays death. If some people become unduly upset, professional support like bereavement counseling should help.
Involving Carers as Partners in the Multidisciplinary Team
Carers have been described as “the lynchpin of community care” [ 17 ] because of their vital role in giving individuals the care they need. They deserve respect and an opportunity to become partners in care with health and social care professionals.
Partnerships of coworking can only exist within a relationship of trust where all
appreciate the value of pooling expertise that is different but complementary. For each “expert patient,” there can be an “expert carer” with a wealth of “local knowl- edge” of the patient. By comparison, training and experience give professional car- ers “cosmopolitan knowledge” [ 18 ] .
However, carers have no automatic right to be involved in a multidisciplinary care team. The care team has a primary duty to accommodate patients’ preferences for end of life, which may affect what carers can contribute. Carers choose to care for various reasons, which are not open to scrutiny, so professionals tend to opt for the safety and manageability of a known team. Even with security checks in place, some fear that including carers will hinder ef fi cient professional practice. In fact, carers often have very high expectations of professional care and carefully monitor how professionals use their knowledge and skills as proof of their trustworthiness.
Because “carers lose trust in professionals more rapidly than relatives do” [ 19 ] , some are reluctant to entrust the care of loved ones to others. The development of trust between professionals and carers is not automatic. Only professionals who notice carers, want to get to know them, and are responsive to their needs and wishes earn their allegiance as co-colleagues.