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 in loss — It’s over, now what? There’s a huge emptiness.
Emotions are spontaneous and a result from a combination of events and the environment. They happen, and you can only control them to a degree. If you let your emotions build without dealing with them, they will come out.
The major emotions associated with Stage 1 are fulfillment, doubt, and anxiety.
Let’s begin by talking about what causes a caregiver to experience feelings of fulfillment. For starters, the care required in Stage 1 is generally relatively light. This allows you to spend quality time with your love one that perhaps you couldn’t spend with them before. At this early stage the care you provide is normally appreciated by your loved one and you’re still able to live a balanced life.
The doubt comes into play when that little voice in your head wonders if you’re doing the right thing. You may feel that you have neither the knowledge or experience to deal with what is to come and this is worrisome. You may also be questioning the safety of your loved one when you are not there. Will they forget to turn off the stove or get distracted and leave a tap running?
Knowing that your loved one has a progressive illness can cause anxiety. While we know the end is inevitable for all of us, this is the time when you need to prepare yourself for the future. Don’t stick your head in the sand!
The keyword for handling the emotions of Stage 1 is Ask.
Ask your doctor
- What to expect
- Who else you should be talking to
- What services are available
Ask your lawyer
- What legal documents should be taken care of
- Is the will current
- Are power of attorneys in place
Ask your family
- Who is willing and able to be involved
Ask your loved one
- What are their desires – Remember this is about them!
Walking with your mom or dad through this journey is challenging but also incredibly rewarding. Next week we will look at handling stages two and three as caring becomes more difficult.
Do you need help in the area of Dementia Care? Check out this available resource: Fit Minds Family Caregiver Program
Nicole has trained hundreds of professional and family caregivers who have touched the lives of thousands of individuals living with a cognitive impairment. Nicole also holds a law degree from Osgoode Hall Law School, a Master’s in Law from Queen’s University specializing in Negotiations and is a Certified Professional Consultant on Aging.