Tag: carer support group

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.

What Do You Do if Mindfulness Does Not Reduce Your Symptoms of Anxiety or Depression?

I was approached recently by a young man who was experiencing severe anxiety.  He was able to cope well with his work but had all kinds of difficulties coping at home, including endless self-doubts, negative self-stories and an inability to relax or concentrate.  He indicated that he had “tried everything’ – meditation, mindfulness practices and reflection. 

He found, for example, that “reflection” only resulted in his entertaining negative thoughts about himself and re-visiting his destructive self-stories.  So, reflection for him resulted in a downward spiral rather than a release from self-deprecation.

What does “tried everything” mean?

The first consideration is how did he approach these attempts to develop mindfulness and reduce his symptoms?  Given the young man’s level of agitation, it was likely that his efforts were somewhat frantic and unfocussed.  One could question whether he engaged in a sustained meditation practice in a focused way, e.g. working on his self-stories with the aid of a meditation teacher or meditation group.

One of the issues is that there are so many different forms of meditation that it is tempting to “try them all” and flit from one form to another, without addressing your specific needs or the causal factors of your depression or anxiety.  This is where a professional psychologist or dedicated professional group could help.  Organisations like Beyond Blue and the Black Dog Institute can help by providing knowledge, resources, group support, access to programs and advice in identifying a suitable medical practitioner, psychologist or psychiatrist.  Other specialist carer support groups can assist people who are experiencing anxiety or depression as a result of caring for someone who has a long-term need for care and support.

The Mental Health Care Plan

You may need medication and/or the aid of an allied health professional to overcome depression and/or anxiety. In Australia, there is a specialist form of help that can be accessed through your local medical practitioner, the Mental Health Care Plan.   You explain your symptoms and needs to a doctor who develops a mental health treatment plan with you.  This may include medication, referral to an allied health professional such as a psychologist and/or other forms of activity designed to address your specific mental health condition.  Medicare will provide rebates for visits to an authorised health care professional where the visits have been the subject of referral by a medical practitioner as part of a Mental Health Care Plan.  The number of visits covered by Medicare rebate is 10 (subject to a confirming review by the doctor after the first six visits).

Advancing our understanding of the causes of depression and anxiety

Johann Hari, in his book Lost Connections, highlights recent research undertaken worldwide that shows that anti-depression medication can be effective in the short term to reduce symptoms but that, in the medium to long term, it typically has to be increased and can reduce in effectiveness over time.  In his book, Johann focuses on the social factors contributing to the global rise in depression and anxiety and proposes solutions that support rather than replace medication treatments, although some people are able to give up their medication after a period of successful use of one or more of these alternative approaches.

Johann identifies seven social factors that contribute to the rise in depression and anxiety, all relating to a loss of connection.  He describes them as “disconnection from”:

Johann acknowledges the research that shows that in some instances a person experiences depression and/or anxiety because of their genes or a brain change brought on by some life experience (pp. 143-155).

Reconnection: alternative anti-depressant treatments

Johann describes several ways to reconnect to overcome depression and anxiety.  These include reconnecting with others, with meaningful work, with nature and/or meaningful values. He also includes chapters on finding “sympathetic joy” while overcoming self-obsession (Chapter 20), and a compelling chapter on acknowledging and overcoming childhood trauma (Chapter 21).

What I found particularly intriguing, as well as very practical, was a chapter on “social prescribing” (Chapter 17).  In this chapter, Johann highlights the work of the Bromley-by-Bow Center which combines a medication approach (where deemed necessary) with hundreds of social programs.  This medical centre is very different to most doctor’s clinics that you would normally visit, both in terms of the orientation of the medical practitioner and the physical environment.  The emphasis is on listening, not medication prescription, and treatment is strongly oriented to “reconnection” strategies such as a walking group, employment skills group, start-up support to establish your own business and a casual group focused on “Create Your Future”.

What further intrigued me was the effectiveness of one project described by Johann through the experience of Lisa, who was experiencing severe depression.  The project was the brainchild of Dr. Sam Everington who was concerned about the over-reliance on anti-depression medication.  Basically, he assigned some of his patients to a community project focused on beautifying a strip of bushland that had become overgrown and neglected but was a popular walk-through. 

The group of people experiencing depression, who had difficulty interacting with anyone and typically kept to themselves, eventually started having conversations, sharing their life histories and their personal mental health challenges as well as plans to beautify the bushland strip.  They had to learn about the seasons, plants and their nutrition needs and how to plant and cultivate different kinds of plants.  They took pride in their project and started to gain confidence and competence.  A moving story was that of a person who had initially presented as very angry and aggressive who went out of his way to help two people who experienced learning difficulties.  Eventually, the members of the group decided to do a Certificate in Horticulture.

Johann pointed out that this creative project addressed two major reconnection needs – reconnection with others and with nature.  It can also be seen that each of these reconnections reinforces the other.

As we grow in mindfulness, we can be open to new ways of dealing with depression and anxiety.  We can learn to reconnect with key elements in our life that induce mentally healthy living, including mindful connection to others, spending time in nature, being grateful for what we have (rather than suffer “status anxiety”) and being willing to show compassion towards others.

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Image by Henning Westerkamp 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.