Sher Gerber

As with many things in life, caregiving is complicated. Whether you are a caregiver, care-receiver or walking with a friend or family member in one of these roles, it is helpful to consider the significant emotional realities that people are dealing with. 

Whether or not it is an acknowledged reality, as a caregiver, you are navigating many layers of loss and grief. This is hard work. It is emotional. It is often not linear. It can be lonely. Consider how grief has shown up in your life other times– the physical symptoms, your mental state, the kinds of support you needed, the amount of time it took to establish some kind of equilibrium or “new normal”…and in light of that be gentle with yourself as you navigate the caregiving journey.

• Because caregiving can be so consuming, it often causes re-evaluation and renegotiation of relationships. Because of time constraints, physical limitations or energy levels, you may not be able to engage with friends and your social network in ways you had previously. You may feel isolated or lonely if others don’t understand your experience or have the challenges and decisions you need to make. 

• Another category of loss is around faith, theology and long-held beliefs. While there are many things that challenge our faith, physical illness and terminal diagnosis can bring up theological issues we haven’t wrestled with. Comments made by those in our families and communities about God’s will, miracles or the nature of healing, can be painful and even cruel. It can be disorienting and depressing to be navigating the caregiving journey AND feel our faith shifting. Yet this is a real, normal response to our experience. 

• This kind of caregiving journey can also significantly impact family dynamics. Often we are forced to make a lot of decisions along the way. This will highlight differences in values and beliefs. There often isn’t a right, easy or obvious answer. Many times we feel stuck choosing between any number of bad options. 

These kinds of interactions in a high stress time can cause past issues to surface. It can unveil baggage and unhealed wounds that are present in our relationships and families.These dynamics can make it difficult to communicate well or make decisions. 

• If you are a child caregiving for a parent, this shifts the power dynamic and relationship patterns.
  • These high stress times can highlight our unhealthy ways of relating. Things that we could previously ignore or differences or irritants that didn’t really matter can become big issues or roadblocks. And this is compounded by the fact that high stress and grievous times are the worst times to try to establish new or healthier ways of relating. 
  • Sibling contributions will never be even; therefore stop keeping score. One of the best gifts you can give your family in these kinds of times is to have clear and healthy boundaries for yourself. Offer what you can and want to give. And leave it at that. Don’t offer in comparison to what others can or should do. Each situation and relationship is unique. The contributions will never be even. So do what you can to eliminate that expectation. 

• Particularly in spousal caregiving situations, the layered losses may include:

• This may mean you are now the sole household manager. Where there was likely some division of labor in your partnership, you may now be responsible for everything– in addition to the work of caregiving. 
• This also (likely) means you have lost your partner in decision making and discernment. Very likely you are used to having someone to talk through significant decisions with. For a variety of reasons, when you shift into the caregiver role, you may be the sole decision maker now. It is a heavy and lonely load to carry. 
• In that shift from partners to caregiver, you have lost your main support. The person who would have picked up the tasks you can’t do when you feel overwhelmed is likely unable to shoulder that load. 
• The person you unburden yourself to emotionally, may no longer be able to hold that kind of space. You may need to filter or “be strong” with the person you are used to being your most true self with. While you can turn to other friends for support, you cannot replicate the shared history and life rhythms. It’s a loss to no longer have companionship in this way. 
• While intimacy changes through various life stages and ages, a terminal illness that changes ones physical abilities and/or mental capacity can lead to the loss of your sexual partner. This is not something people talk very openly about (in the circles I’m part of), but it is a real loss that needs to be accounted for. 

So…what, now? Part three of this series will outline practices, tools and strategies for caregivers. For those supporting caregivers, this will be a set of practical and meaningful resources. 

This is the second in a three part series of resources for caregiving. Check out part 1 and part 3. These ideas are drawn from a presentation for caregivers given at Crown Hill Mennonite Church in May 2022.