Simply put, caregiver burden is an all-encompassing term used to describe the physical, emotional, and financial toll of providing care for a loved one. The causes of caregiver burden are complex and result from the intellectual, social, financial, and spiritual challenges caregivers face.
Upwards of 90% of dementia suffers have significant behavioural disturbances that challenge and upset family caregivers. Many caregivers find themselves lacking either the knowledge to understand the disease or the skills necessary to manage challenging behaviours, such as aggression, depression, delusions and wandering.
In addition to being inadequately prepared, there are usually psychological factors at play. Your relationship with the person who has dementia will change and this can cause you to feel enormous grief. As the disease progresses, you may experience a loss of emotional or physical intimacy. The gamut of emotions you may experience is broad and ranges from denial, anger, fear, sadness, guilt, frustration, and anxiety to helplessness, hopelessness, and feelings of being trapped.
It’s important you recognize these symptoms early and develop coping strategies. Stress that is managed or handled is not harmful. However, unmanaged stress will accumulate and build up. If this goes unchecked long enough, it can negatively affect your own health.
Remember, you’re not in this alone. There are choices available to you to help share the care burden, such as publicly funded home care, community services and support programs and private home health care services.
In this post I want to cover the emotional stages you’re likely to encounter on this caregiving journey, along with some self-care strategies and tips. There are normally four stages, with each stage broadly defined as follows:
Stage 1: Less than 10 hours per week – Generally around the time that a person is diagnosed with an illness and needs some help, but many of the symptoms are not yet present.
Stage 2: More than 10 hours per week – Caregiving duties are starting to turn into a ‘job’ and your time is getting limited. This is where the stress typically starts to set in.
Stage 3: Getting overwhelmed – The person’s conditions are getting worse and harder to deal with. This is where much of the emotion that has been building becomes too much.
Stage 4: Caregiver