You may have uttered these words aloud or just whispered silently in your mind as you wash another set of bedsheets or return home after finding your loved one wandering down the street (again). There are many reasons family caregivers find themselves wondering how much longer they can continue caring for a loved one as the journey can be long and exhausting. Chances are the situation has changed significantly since this journey began with a diagnosis and their dependence on you is becoming more than any one person can tolerate.
Becoming a family caregiver is a role that no one is prepared for and has a steep learning curve. Whether you are caring for a parent, a spouse or someone who needs your support in response to a cognitive impairment, the road of a family caregiver can be long and bumpy; with some anticipated turns but many are unexpected or resisted. As a Marriage and Family Therapist who specializes in Family Caregiving, I have seen the isolation and fatigue that affects well-intentioned caregivers physically, emotionally, mentally and spiritually. Any support group will tell you this journey is exhausting and going it alone is a recipe for burnout.
Many caregivers express concern about the promises they made to their loved ones, or even their own sense of obligation, which leads to our conversation today: betrayal. The Merriam-Webster dictionary defines betrayal as an action “to hurt (someone who trusts you, such as a friend or relative) by not giving help or by doing something morally wrong.” In this context, the only betrayal I have observed in working with family caregivers is to oneself. To allow your own health and well-being (as well as relationships) to be compromised in this chapter of your life is a betrayal to the rest of your family, friends, and colleagues. Hopefully, most understand how these sacrifices are “part of the job” yet we need to remember the value of our own self-worth and how burnout indicates the need for re-balancing our priorities.
Self-care is an ongoing conversation that includes listening to our inner voice whispering “How much longer can I do this?” or “When will this end?” The following steps outline survival strategies for family caregivers to consider with “Mary:”
Step 1: Realistically, how much longer can you do this without making any changes? Be specific- two days (something needs to change now), two weeks (something needs to change very soon), two months (something will need to change). For example, Mary’s doctor is concerned about the toll caregiving for her husband is taking on her physical and emotional health and Mary indicates she doesn’t know how much longer her body will let her keep doing this and she doesn’t want to involve her children yet. Write this down and/or tell someone who is on your support team.
Step 2: What is the most challenging part of being a caregiver right now? What one change would be a relief? Mary has to cajole her husband to take a bath since the dementia affects his ability to understand the need for this now (emotionally tiring) and he is six foot tall and needs her support in/out of the shower (physical strain, affects her arthritis and blood pressure). Write this down and/or tell someone on your support team.
Step 3: How would this benefit you and/or your loved one (by removing this challenge or making this change)? Mary’s exhale is worth a thousand words as she imagines how life could be different with bathing assistance and taking this task off her list. This step oftentimes reveals the anxiety she experiences when it’s time for his shower and she becomes even more aware of why she feels mentally and physically exhausted (and this is only one of the many tasks Mary helps her husband with!). Write this down and/or tell someone on your support team.
Step 4: Research options from sideeffects.com/, pick one, and try it on! This step is a big one after reflecting on what needs to change and why since this will likely require asking for help and making a change. Mary and I explored the bathing assistance options (e.g., inviting a family member, private individual, or in-home care agency to assist with bathing) and Mary decided to hire a local in-home care agency who provides a bathing service (once per week) and even offered to run the vacuum and change the linens during their shift. She doesn’t need to “bother her family” and they can start next week! Write this down and/or tell someone on your support team.
Step 5: Make a date: Mark your calendar 2 months from today to re-evaluate. Mary didn’t have to wait two months to know this was a positive change for she and her husband. In fact, he was much more amenable to the shower with the professional caregiver and Mary met her friends or daughter for lunch on a regular basis. Mary now has a relationship with another person who cares for her husband and is even considering increasing the “respite” each week for doctor appointments and spending time with her grandchildren. Write this down and/or tell someone on your support team.
As we consider this next step, it’s important to breathe and remember that these changes can be adapted or even reversed if “it doesn’t fit.” The ultimate goal is to reduce the physical, mental and emotional stress for the family caregiver which will benefit your family member tremendously. Whether you decide to ask for help from a family member/friend, interview an in-home care agency to help with bathing and light housekeeping, enroll your loved one in an adult day program, or contact a placement
agency to assist with finding the best care home to meet your loved one’s needs- just considering the step and taking it is all that is needed; this will give you the answer to the question that began this conversation. How much longer can I do this?
Written by Stefani Wilson
Licensed Marriage and Family Therapist