Tag: caregiver

Alzheimer’s Disease – Self-Care for the Carer

If you have a family member or friend suffering from Alzheimer’s disease you may find yourself suddenly thrust into a carer’s role, often with little preparation and understanding of that role.  The tendency is to “soldier on” through all the difficulties and ignore the emotional toll on yourself.  However, there are many resources and people willing to help and mindfulness can play a role in your self-care.

You may be witnessing the cognitive and behavioural decline of someone you love who not so long ago was vital, well-read, highly competent, intelligent, and very aware of current events and global trends.  Now you are having to contend with the emotional, financial, and time-consuming toll of caring for someone who has Alzheimer’s (on top of your daily work and life with their own challenges).

Dealing with the symptoms of Alzheimer’s disease

You may have to deal progressively with some or all of the following effects that Alzheimer’s has on your loved one:

  • Disorientation: losing track of where they are; thinking that they are in hospital or just out of hospital when neither is true; thinking they are in a location where they lived many years prior; assuming that their location is somewhere that happened to be mentioned in casual conversation.
  • Rapid memory loss: forgetting what they set out to do and constantly forgetting in the course of some action, e.g., finding their phone, having a shower, locating an object – the result is that everything takes so much longer and tests your patience (despite your good intentions).
  • Loss of practical skills; unable to do normal daily tasks such as cooking, keeping accounts, paying bills, driving the car or operate the TV remote.
  • Mood or personality changes: going from pleasantness to anger and aggression, happy to discontent, calm to agitated, confident to fearful, purposeful to suffering apathy and inertia; or any of the other possible mood/personality swings.
  • Indulging in unusual behaviours: constantly packing up the house expecting to be moved, indulging in unsafe behaviours (e.g., ladder climbing when they are unsteady), tendency to wander and lose their way (even in very familiar territory).
  • Confusion: forgetting who individuals are and their relationships, constantly losing things, thinking that a past event is happening in the present and preparing for it with some anxiety.
  • Difficulty with self-expression: unable to find the words to express what they want to say.

Each of these symptoms is taxing for the carer as well as the person suffering from Alzheimer’s.  As a carer, you may not know what to say, you can become confused about what is true and what is imagined, and you can become uncertain about the best way forward and the decisions that need to be made.

Self-care for the carer

There are many things that a carer for an Alzheimer’s sufferer can do to proactively care for their own welfare and psychological health:

  • Inform yourself about Alzheimer’s disease – understanding the disease helps you to make better decisions, reduce some of the uncertainty you are encountering and provides insights into how best to help the person experiencing Alzheimer’s.  One of the best resources around that is also very readable is Harvard Medical School’s report, Alzheimer’s Disease: A guide to diagnosis, treatment, and caregiving.  This publication details the symptoms of the disease, the impact on the brain and its structure, progression pathways, and, most importantly, incorporates a special section on Caregiving: Day-to-day challenges and beyond.  Understanding the decisions that need to be made, the options available and their impacts, makes it easier to make sound decisions amid the uncertainty and disruption surrounding the role of carer for an Alzheimer’s sufferer.
  • Gaining support from relatives and friends: typically, there is a tendency to “go it alone”, however, the role of carer for an Alzheimer’s sufferer is incredibly personally taxing.  Harvard Health describes caring for someone with Alzheimer’s as “one of the toughest jobs in the world “ and that your own life will be “dramatically altered” in this carer role.  It is vital that you “share the load” with relatives and friends where possible, e.g., with tasks such as visiting the person who is experiencing Alzheimer, talking through decisions, or sharing the financial burden.
  • Drawing on professionals and networks: It is important to draw on the collective knowledge of expert medical professionals such as the family doctor and appropriate specialist services such as a geriatrician or gerontologist. There are also support networks such as Alzheimer’s Association that provides support groups and professional information informed by research.  There are also carer support groups, such as Arafmi, for people caring for those suffering from a mental illness or “psychosocial disability”.
  • Exercise: physical exercise can reduce stress, enhance capacity to deal with stressors and provide the opportunity to “clear the head” and /or think more clearly about decisions to be made and options that can be explored.
  • Take time out: taking time for yourself such as a weekend or week away.  This is more manageable if you have already shared your situation with family and friends and drawn on their support.  It would also enable you to be more mindful about your own life and needs and options going forward. 
  • Developing mindfulness practices: mindfulness has a wide range of benefits that can assist in your role of carer.  For example, mindfulness can help you build resilience; manage uncertainty; develop calmness; deal constructively with difficult emotions such as anger, resentment, and frustration; and improve your psychological health overall.

Reflection

Alzheimer’s is an incredibly draining illness both for the sufferer and the carer. It takes its toll emotionally, physically, cognitively, and financially. It is vitally important for carers to be very conscious about the need for self-care and to be committed to being proactive about mindfulness practice.  As carers grow in mindfulness, they are better able to manage the multiple stressors involved and to achieve a level of equanimity even amid the disruption, uncertainty and turbulence involved in caring for someone with Alzheimer’s.  There are numerous resources available to assist carers and help them to make sound decisions and take wise action. 

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Image by Gerd Altmann from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Self-Care for Healthcare Professionals

Dr. Reena Kotecha presented at the 2020 Mindfulness & Compassion Global Summit on the topic of self-care for healthcare professionals.  Reena highlighted the irony of healthcare professionals caring for everyone but themselves and, in the process, suffering pain, disillusionment and burnout.  She shared her own story of depression, mental illness and suicidal thoughts resulting from working as a young doctor in an emergency department in a hospital.  She was drowning in self-doubt, suffering anxiety about the future and trying to cope with her present level of stress symptoms such as palpitations and sleeplessness.  Reena found her way out of the dark hole of depression through meditation.

She highlighted the stresses that healthcare professionals are experiencing in these challenging times of the Coronavirus.  Reena spoke of frontline healthcare workers who had to move out of home to protect their family and/or elderly parents, of the sadness and grief they experienced with the death of patients, of the frustration of having inadequate resources (such as personal protective equipment) and of their fear for their own safety in terms of the impact of their work on their mental and physical health.  Frontline professionals experience the intensity and immediacy of Coronavirus-related stress and emotional inflammation as a result of the risks to the life of their patients and their own life.

Barriers to healthcare professionals seeking help

Reena emphasised that healthcare professionals not only tended to overlook caring for themselves but also failed to seek help for their mental welfare when they really needed it.  She spoke of the barriers that stop healthcare workers from seeking professional support (some of which she experienced herself):

  • Training focus – all the focus of their training is on how to care for others, very little of the training is focused on caring for themselves or how to seek professional help for themselves
  • Priority focus – healthcare professionals are singularly focused on caring for others and they fail to give priority to their own mental and emotional health that would actually enable them to care for others more effectively and in a more sustainable way.  As Reena points out, healthcare professionals are much more comfortable and more proficient in the role of caregiver than that of “care-taker”.
  • Career focus – healthcare professionals become concerned about what others, including management, would think of them if they admitted to not coping and experiencing some form of mental illness (which still carries its own stigma).  They can be concerned about how others will judge them and what impact this would have on their career.
  • Expectations focus – the community has highlighted the heroic efforts of the frontline healthcare workers but this brings with it an unrealistic set of expectations that they are all strong and courageous, free from normal human emotions of fear, anxiety and self-doubts and the resultant experience of depression with its concomitant impacts of inertia, exhaustion, reticence and lack of energy.  In the light of this community expectation set, they are reluctant to admit to “weakness and fragility”.

Young healthcare professionals may begin their career with an unerring focus on their patients, giving priority to their caregiver role and ignoring their own needs.  They may feel really uncomfortable about being seen as “needy” or becoming a “care-taker”.  Professionalism is interpreted by them as being strong and efficient, able to cope with any situation.  Gradually, however, the singular focus on patients begins to take its toll and is compounded by the fact that no matter how hard or fast they work, demand continues to outpace resources and capacity.  They begin to experience stress, fatigue and sleeplessness.  Despite these signs of not coping they push on – driven by their own expectations and the perceived expectations of others, including the “worshipping” community.  Burnout results when the gap between what they are putting in and their intrinsic satisfaction with their work widens to the point where they lose belief in the value of what they are doing – burnout occurs on the physical, emotional and spiritual levels.

Mindfulness as self-care for healthcare professionals

Self-care for healthcare professionals is a lifetime passion for Reena, partly generated by her own early professional experience but also reinforced by the healthcare workers who seek her help and support during these highly stressful times.  She is the founder of Mindful Medics – an 8 week course for healthcare professionals incorporating mindfulness, emotional intelligence, neuroscience and positive psychology. Participants in the course have experienced significant benefits for their mental and physical health as well as in their overall personal and professional lives.

Reena is also a highly recognised public speaker on the topic of her lived experience.  For example she presented at the Happiness and Its Causes Conference in 2018 on the topic, Personal Story: Healthcare Starts with Self-Care.   In her Summit presentation, Reena provided a gratitude meditation designed to focus on appreciation for what we have in the present to displace a focus on a disturbing past or anticipatory anxiety about the future.  There is so much that we can be grateful for and savour in our life – nature and our environment, the development of our children, our achievements and rewards and the space of being alone. 

Reena in an article, titled I am grateful…, recommends strongly that we develop a constant practice of expressing gratitude for the simple things that we have in our lives and highlights the neuroscience research that supports the benefits of gratitude for mental health and wellbeing.

Reflection

It is important to express compassion for others, especially healthcare professionals and those directly impacted by the Coronavirus.  However, we have to recognise the enormous stress healthcare workers are experiencing in these challenging times and be more aware of not adding to that burden by perpetuating the expectation that they, individually and collectively, can cope with any challenge at no cost to themselves.  We can also offer our support for people like Reena who are helping healthcare professionals to develop mindfulness as a means of self-care.  The Mindful Healthcare Speaker Series is one ongoing event that we can support.

As we grow in mindfulness by focusing on self-care through mindfulness practices and gratitude meditation, we can become more conscious of what we are thinking and feeling and be better able to appreciate the present moment and all it has to offer in terms of overall wellness and happiness.  Mindfulness enables us to identify our barriers and expectations, acknowledge when we need help, develop strategies to cope more effectively and progressively build our resilience.

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Image by Petya Georgieva from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Carers Need Self-Care

Much of the focus in the resources on mindfulness is on ways to help people who are suffering from conditions that are debilitating such as mental illness or chronic pain.  Very little of the resources focus on ways to help carers in their role – ways to manage the physical and psychological toll of caring for someone else on a constant and extended basis.  Carers are the overlooked group – forgotten by others and themselves.

Carers: people who care and support others

Carers come in all shapes and sizes  – adults looking after ageing parents who may be suffering from Alzheimer’s disease; siblings caring for a family member who has a mental health condition such as schizophrenia, anxiety or depression; or anyone caring for someone suffering from a physical condition such as paraplegia, chronic pain or cancer.  According to Carers Australia, carers are people who provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged.

The toll of caring

The “burden of care” can be felt both physically and psychologically.  The physical toll for carers can be excessive – they can become exhausted and/or accident-prone, suffer from sleep disorders or experience bodily symptoms of stress such as irritable bowel syndrome, chronic fatigue or related conditions like fibromyalgia. The physical toll of caring can be experienced as cumulative stress and lead to chronic conditions that adversely affect the carer’s long-term health.

The psychological toll of caring can also be cumulative in nature and extremely variable in its impact.  Carers can experience negative emotions such as resentment or anger, despite their compassion towards the person who is being cared for.  They can become extremely frustrated over the paucity of time available for themselves, the opportunity cost in terms of inability to travel or to be away for any length of time, the lack of freedom (feeling tied down), the lack of improvement in the condition of the person being cared for or the financial impost of caring (preventing desired savings/purchases or home improvements). 

Carers do not have inexhaustible personal resources – physical, psychological and financial.  They can suffer from compassion fatigue which can be hastened by emotional contagion resulting from close observation of, and identification with, the pain of a loved one.  Hence, carers can experience depression, anxiety or grief – reflecting the emotional state of their loved ones who are suffering.

The toll on carers has been the subject of extensive research.  For example, Emma Stein studied the psychological impact on older female carers engaged in informal aged care.  Sally Savage and Susan Bailey reviewed the literature on the mental health impact on the carer of their caregiving role and found that the impact was highly variable and moderated by factors such as the relationship between caregiver and receiver and the level of social support for the carer.

Being mindful of your needs as a carer

The fundamental problem is that carers become so other-focused that they overlook their own needs – their need for rest, time away, relaxation and enjoyment.  Normal needs can become intensified by the burden of care and the associated physical and psychological stressors.  Carers tend to neglect their own needs in the service of others.  However, in the process, they endanger their own mental and physical health and, potentially, inhibit their capacity to sustain quality care.

Carers can inform themselves of the inherent physical and psychological consequences of being a caregiver, particularly if this involves intensive, long-term caring of a close loved one (where feelings are heightened, and the personal costs intensified).  Mental Health Carers Australia highlights the fact that people who care for someone with a mental health illness are increasingly at risk of “developing a mental illness themselves”.

Self-care for the carer

One of the more effective ways that carers can look after themselves is to draw on support networks – whether they involve family, colleagues or friends; broad social networks; or specific networks designed for carers.  Arafmi, for example, provides carer support for caregivers of people with a mental illness and their services include a 24-hour carer helpline, carers forum, blog, educational resources, workshops and carer support groups. Carers Queensland provides broader-based carer resources and support groups.

Carers tend to go it alone, not wanting to burden others with “their” problem(s).  They are inclined to refuse help from others when it is offered because of embarrassment, fear of dependency, concern for the other person offering help, inability to “let go” or any other inhibiting emotion or thought pattern – in the process, they may stop themselves from sharing the load.

Carers could seek professional help from qualified professionals such as medical doctors or psychologists if they notice that they are experiencing physical or psychological symptoms resulting from carer stress.

Mindfulness for carers

Carers can use mindfulness practices, reflection and meditation to help them cope with the physical and emotional stresses of caregiving.  Specific meditations can address negative feelings, especially those of resentment and the associated guilt.  Mindfulness practices can introduce processes that enable the carer to wind down and relax – such as mindful breathing, mindful walking, mindful eating or using awareness as the default when caught up with “waiting” (a constant companion of the carer role).

Carers can employ techniques such as body scan to relax their bodies and release physical tension.  Deep, conscious breathing can also help in times of intense stress such as when experiencing panic. For people who are religious, prayer can help to provide calm and hope.

Dr. Chris Walsh (mindfulness.org.au), offers a simple mindfulness exercise for self-care by carers in his website article, Caring for Carers.  The exercise involves focusing, re-centering, imagining and noticing (thoughts, feelings and bodily sensations).

As carers grow in mindfulness, they can become more aware of the stress they are under and the physical and psychological toll involved. This growing awareness can lead to effective self-care through social and professional support and meditation and/or mindfulness practices. Mindfulness can help carers develop resilience and calmness in the face of their stressful caregiver role.

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Image by Sabine van Erp from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.