When a loved one is diagnosed with a chronic illness, disability, mental illness or cognitive disorder, medical complexity, or other health care needs, not only the loved one’s life may change, but it has an impact on the lives of everyone around.
You may suddenly find yourself thrust into the role of a caregiver, even if you’re not physically providing the care. Caregivers aren’t solely those who provide physical care like grooming and bathing, housekeeping, administering medicine, and taking loved ones to the doctor. Caregivers also support loved ones by paying bills, doing medical research and talking with doctors, and helping to prepare the legal and business aspect for a loved one who can no longer operate independently.
The reality is that in stepping into the role of a caregiver, you’ll need a support system to lean on and just a place to vent. This is a new phase in your relationship with your loved one, and you need your own support system. Time management can be a challenge for the competing life demands associated with caregiving for children as well as a medically comprised loved one.
Your new relationship may have other dynamics because of a role reversal. When you’re suddenly the one having to provide care for a parent, and they’re experiencing memory loss, it can be difficult for you both to adjust. You may feel as if you don’t know who they are, and they may have forgotten who you are.
A good caregiver support group will become your community. They provide you with information and resources about developments in treatments or what to expect at different stages. Someone else in the room will have a “been there, done that” understanding of what you’re going through that the best and most loving friends can not because they haven’t experienced it.
Finding the right caregiver support group has equal significance to locating and participating in one. You need one that fits your lifestyle and makes you feel comfortable when attending. Here are a few things you may consider as you visit groups, but there is no perfect answer for what it should be; the most important thing is that it works for you and your needs.
Caregiver support groups don’t have to be formal arrangements; they can be as simple as a group of people you can depend upon to provide a listening ear or social outlet. You may find a group via a local senior community center, church, synagogue, or other places of worship. Most often, these groups are open to anyone regardless of their faith or membership in the center.
When you’re looking for more support in handling a specialized medical condition, it can help by asking your loved one’s healthcare provider or a facility social worker if they are aware of any groups.
Another resource is seeking out disease-specific associations. The American Diabetes Association and the Alzheimer Foundation of America are just two groups that provide resources on where to go. The National Alliance of Caregiving can offer assistance in how to find a group for your specific needs, and companies like Care.com can be a great asset when looking for an in-home caregiver.
Support groups via Zoom, FaceBook, message boards, or other dedicated communities are just as powerful as in-person groups. They may offer even a greater ability to participate because they don’t require any travel time and have a higher level of confidentiality.
Finding support groups via social media can be as easy as searching for “cancer caregivers” or “Jewish working daughter caregiver support.” Be as complete in what your specific need is as possible, and you’ll better be able to find a group that you can connect with.
The connections you build via these groups are just as real, but be wary of sharing too much personal or health information and falling for a scam. Practice good internet safety habits like not sharing your password and using a random screen name. Over time, you may decide to meet up or talk with your support group in person. Until then, be cautious.
As a final note, changing health care needs can be difficult for everyone involved in the family. You need a support group as a caregiver, but the loved one you’re providing care for may also benefit from one. They are also dealing with their own issues regarding loss of independence, financial transitions, guilt about life choices, facing mortality, etc.
Your loved ones like spouses, siblings, and/or children may also need support as they go through the transition with you. There are support groups and summer camps for the siblings of children with chronic illnesses where they can attend along with a medically comprised sibling.
Be intentional about looking for resources to support everyone at their stage in the health care journey. Caregiver support groups and other tools like therapy and respite care are all elements of supportive mental health for a healthcare journey.