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