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Much is written these days about mindfulness, self-care and the importance of taking care of oneself when caring for others. There is a list that I’m sure each of us can recite as we think about the next task on our respective to-do list or run off to get the next thing done. What helpful information is available to what the academic community refers to as the ‟informal caregiver” that makes a real impact in supporting them in their efforts to care for their loved one?
There are plenty of articles revolving around self-care for the caregiver. So I won’t tell you to eat your cruciferous vegetables or to exercise regularly. Nor will I suggest that you limit the consumption of your favorite vice or to make more time for yourself. (I can see your eyes roll as I think these things.) You know about the need for communication, about listening to the one you are caring for, and about the importance of planning and organization. And I know that you have been told to look for support.
Academia sometimes has a way with words.They define ‛informal′ caregiver as follows: When a family member or friend tends to the needs of one who is ill or has some form of adult onset cognitive impairment (e.g. Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury).
It is a simple definition, but look into the eyes of a loved one who is caring for a family member and the story is very different. There is nothing ‛informal’ about caregiving. It is a situation fraught with complexities that are emotional, physical, and spiritual. And this is just looking at the individual, without consideration of the economic impact that each family must confront when dealing with a catastrophic illness.
While it is important to learn how to take care of yourself while caring for aging parents, generalized lists that offer valuable suggestions can sometimes have a distance to them. We are out here with ideas without a specific target. Knowing what is needed and what will really make a difference for you, the caregiver, is always a little elusive. And yet despite the army of goodwill and helpful tips available these days there seems to be a missing piece that seldom gets addressed outside of personal, direct interactions. And that has to do with how to accept and adjust to what is involved in being the primary caregiver. The door becoming a caregiver is the relationship we have to the one who faces a catastrophic diagnosis. We enter the role out of love and loyalty. But as time passes and the reality of the situation becomes clearer, many caregivers are confronted with a circumstance that has no foreseeable end date and seemingly endless issues. The role of caregiver is not one that anyone choses; it is a need that unfolds into a profoundly changed life.
The caregiver’s journey can entail a very bumpy ride through one’s emotions. If we were perfect we would not have to contend with fear, exhaustion, resentment, loss, jealousy, grief, crankiness, depression, anxiety, boredom, anger, and ambivalence, to name just a few of the bumps that we might confront when we take on the role of caregiver.
Without a larger perspective, any one of these emotions can send one into a downward spiral. They can compromise our ability to care for ourselves while caring for our loved one. In order to keep our emotions from dominating us, we must develop an ability to hold both the condition of our loved one and the situation that we find ourselves; we need to be able to navigate it all. However, we are going to fail. We will not be able to meet every situation perfectly despite wanting to do our best.
One of the biggest tips, if there is one to offer here, is to realize that this new life that a caregiver finds themself in is perhaps one of the biggest challenges that anyone can accept. It is also potentially, one of the deepest and most gratifying paths that one may encounter.
Caregiving is difficult. It is meeting a need that is unwanted and yet it brings with it the potential to build on what is already a powerful relationship, deepening the intimacy and connection between the one being cared for and the caregiver. There is something deeply human about tending to someone who needs assistance. There is much to discover about ourselves and the other. You will have difficult days and you will have magical days. This is a journey that can make you bigger than you have imagined and yet there are no shortcuts. There is no simple answer to getting through this period in life. There are things to do and people a caregiver can contact but when it comes down to it, caregiving at its best gives us the opportunity to grow and learn in love and compassion, for our loved one and for ourselves.
Caregiving is a door that allows us to become fully and completely alive. It is a path that when embraced makes us even more human. There is absolutely nothing casual about it.
Helpful Resources for Family Caregivers:
Family Caregiver Alliance
National Center on Caregiving
FCA CareJourney: www.caregiver.org/carejourney
Family Care Navigator: www.caregiver.org/family-care-navigator