Challenges Facing Long-Term Mental Health Caregivers
December 7, 2022
As part of our Caregiver Expectations Throughout Treatment educational series, we interviewed Sandra Edmonds Crewe, MSW, PhD. Dr. Crewe is Dean and professor of Social Work at Howard University with experience as a caregiver. The following is Part One of a two-part interview.
What are the most common challenges facing long-term family caregivers of people living with a mood disorder?
Caregivers very often feel like they are in their situation alone, have exhausted all available resources, and have to engage in caregiving by themselves. For long-term caregivers, “staying in the game” and not blaming their loved ones are common challenges as they deal with ongoing and changing needs.
One approach that can help caregivers remain connected and compassionate is to distinguish between the person and the disorder. Caregivers can benefit from trying to view the situation through their loved one’s lens. Your loved one doesn’t want to be experiencing symptoms, behaviors, or disruptions related to their mood disorder. Try to remember that they are doing their best given their circumstances.
Caregivers might not realize that there are supports available. It is almost never the case that there is no one else who can help. Frequently, whether consciously or not, the caregiver may be preventing others from stepping in. They believe that they are the only ones who can take care of their loved one’s various needs and issues. They might fear potential consequences of relinquishing some of the responsibility. Or they just might not see alternatives.
Caregivers need to allow others to play a role. This can be difficult because someone else might deal with a situation differently than the caregiver would. A different approach isn’t necessarily bad or wrong, and it might open a new pathway for the caregiver to consider. Look for people – relatives or not – who can be available, listen, give encouragement, and potentially offer solutions that you haven’t thought of yet.
Fractured Family Relationships
When someone has lived with a mood disorder that is untreated or under-treated for many years, their relationships may have fractured. Sometimes, the long-term family caregiver is the only person (or one of few) who still interacts with that loved one. What advice do you have for that caregiver, who may also feel isolated, overburdened, or frustrated?
When the responsibility of caregiving comes your way, it’s likely a combination of choice and necessity. Try reframing the situation to make it positive: “I did not choose this, but perhaps I was chosen.” You are positioned to bring light and hope to someone you care about.
You might be angry that other members of the family are not participating. Simply saying “I need help” will probably not get you the help you are looking for. Rather than criticizing the help you get, be specific about what kind of help you would like. Try to express your needs in a way that invites others to help without making them feel guilty. And even if they don’t want to be directly involved with your loved one, they can still be a support for you.
If it will make you feel better to vent, then find someone who will listen. Let them know what you would like them to provide. Do you want someone to listen and validate your feelings? Do you want someone to offer suggestions? Vent, then let go of those feelings and move on.
Remain alert for moments when your loved one is able to be the “self” that they want to be. Ensure that your relationship with your loved one doesn’t focus solely on negative encounters. Embrace opportunities for positive interactions when you can laugh with them, point out good things that are happening, and help to make life better for them.
Here, too, self-care is so important. Taking steps to manage your stress reduces the likelihood you will feel worn down and fractured. And when you feel well, you will feel better about providing support to your loved one.