This is an excerpt from my presentation last night at Vancouver Hospital: The Positive Potential of Caregiving: Surviving, Thriving and Finding Meaning.
The Challenges of Caregiving Caregivers take on a role on top of their other roles in life. They may need to manage the financial, medical and household affairs of a family member while still attending to their own. They may be sandwiched between caring for their growing children and their aging parents. There is only so much time. You only have so much energy, yet your remain on call 24/7.
Many adult children look after elderly parents, uncles and aunts and see it as paying back for the love and care they received as children. Sometimes our feelings towards our family members are mixed. None of us is perfect as a child or a parent. We all make mistakes and we easily fall into patterns of behavior and rigid ways of relating to our family members.
Sometimes our family member may resist the change in roles. In the face of growing disability, they may struggle for their independence and refuse the help they need. They may persist in the role of being in charge though they may lack the capacity to make appropriate decisions.
Caregivers therefore experience a mix of emotions. They may love them dearly but feel frustration and resentment with their roles and how they are treated. Outstanding issues in their past relationships may add further conflict to their lives today.
At times, the demands of caregiving can be overwhelming, and as family members’ disability and dependence increase as it always does, there inevitably will be a point when you can reach your limit. You may break down in tears, lose your temper or feel like giving up, and when this happens, you may feel guilty about it.
Care of the Caregiver Caregivers of course are at greatest risk for Caregiver Stress. They need to be aware of the signs and symptoms and know when and how to get the help they need.
We all need some stress. Otherwise, none of us would ever get out of bed. Hans Selye distinguished good stress or eustress from bad stress or distress. My 16-year-old son is a sleepy head in the morning and has great difficulty getting to school on time.
If it’s my turn to wake him up, I don’t want to cause him distress by turning on his light and shouting, “Wake up! Get out of bed!” I prefer to gently jump start him with some eustress, waking him with a gentle “Good morning. It’s time to wake up.” I then prop him into a sitting position, and then finally walk him towards his washroom. Once he’s walking on his own, we’re home free.
We all need enough challenge to be healthy, productive and engaged in our lives. If school or work is far below our abilities, we feel bored. However, if the demands on us far exceed our capacity to deal with them, we become stressed.
Over time, chronic stress can lead to a sense of helplessness, which is associated with anxiety. If this persists, we may acquire a sense of hopelessness, which in turn is associated to depression.
So caregivers are at risk for excessive stress, anxiety and depression. These feelings in turn will shade our thinking, influence our behavior and impact our capacity to help ourselves as well as our family members.
When we are suffering from anxiety, we will be prone to panic. Our thoughts may be more disorganized and we may be preoccupied with worries. We underestimate our resources and abilities. We overestimate our challenges. We will have difficulty sleeping. We may catastrophize – imagining the worst case scenario – everyday.
When we are depressed, we may feel weepy, dejected and hopeless. Physically, we may have changes in our appetite and sleep. We will feel tired, lethargic and unmotivated. We may stop enjoying the little pleasures in life. Our concentration and memory may suffer. We may be pessimistic about ourselves, our lives and the future.
If you recognize these signs of distress, anxiety or depression, you should speak to your family doctor as soon as possible.
With chronic conditions, we have to recognize that there may be a time when we are no longer able to care for our family member at home. Ideally, we would have these discussion early on, discussing as a family possible scenarios for future care either with homecare support or residential care at a long term care facility or assisted living. Another option is respite care – a short-term stay at a residential facility for a weekend or a week. This may allow the primary caregiver to take a much needed break.
The conversation should start early because we really want to respect the preferences and values of the individual. If we wait too long, our family member may no longer be capable of making important decisions.
Next Post: Caring for the Whole Person