Caring for a family member with chronic pain or another chronic illness can be challenging. When the diagnosis happens, caregivers are busy with the work of finding out more about the illness, treatment options, and coordinating care. Once this early stage is complete, caregiving becomes a daily routine that can lead to caregiver burnout (also known as compassion fatigue). Caregiver support groups can provide a lifeline for caregivers who are feeling stressed, isolated, and alone. Here’s how.
Why are caregiver support groups so important?
The American Institute of Stress identifies the stages of caregiver burnout as follows:
Symptoms of caregiver burnout can include:
- Physical, mental, and emotional exhaustion
- Reduced sense of accomplishment or meaning in their work and caregiving
Mental health symptoms
As caregivers proceed with the daily work of caring for a loved one, it is only normal to feel tied down, trapped, and burnt out.
Caregivers have some of the highest rates of depression, with between 40% and 70% of caregivers showing clinically significant signs of depression. For caregivers of patients with dementia, these rates of depression increase with the severity of the illness.
Physically, caregivers report a decline in their own physical health over time. Caregivers report their own health as poor or fair at a rate of 14% in the first year of caregiving. This rate increases to 20% after five or more years of providing care.
This decline in health can be measured in years taken off life expectancy. Sixteen percent of the workforce in the U.S. serve as full-time caregivers, and their physical health index score is much lower regardless of age.
According to the Gallup Healthways Well-Being Index, caregivers are also more likely to experience the following:
- High blood pressure
- Chronic or recurring neck and back pain
- Chronic or recurring knee and leg pain
- Physical symptoms that prevent normal daily activities
Benefits of caregiver support groups
The main benefit of caregiver giver support groups boils down to one thing: they are a lifeline for those who care for chronically ill loved ones. Caregiver support groups can:
- Help the caregiver feel less lonely and isolated
- Improve coping skills
- Empower the caregiver and offer a sense of control
- Provide practical knowledge on the loved one’s condition or their treatment options
- Reduce stress, anxiety, and depression
- Improve caregiving skills and abilities
- Provide an outlet for frustrations
- Explain what to expect with a loved one’s illness
Online caregiver support groups offer further benefits of access, availability, and anonymity.
Caregivers with a smartphone can find a sympathetic ear any time of day without sharing their identity. This can be crucial for caregivers who live in rural areas or small towns where in-person groups are not available or discretion is important.
What should I consider when looking for a support group?
Whether you are looking for an online or in-person support group, there are a few things to keep in mind.
First of all, confidentiality is important. You may reveal personal or sensitive medical information. It is crucial that group organizers and members protect your information. Online support groups should be moderated, with clear rules for online conduct.
Next, listen to your instincts. If you feel like the group is not meeting your needs or may not be a good fit, find another one (or start your own!).
Where can I find online caregiver support groups?
Online caregiver support groups may be your only option if live in a small town. Here are a few groups to get your started.
1. Family Caregiver Alliance online caregiver support groups
The Family Caregiver Alliance has two online support groups to choose from. The first group is a general support group for caregivers, and the second is LGBT Community Support: Caregiving for our Families and Friends.
This second group is sensitive to the unique issues that lesbian, gay, bisexual, and transgender caregivers of adults with chronic health problems may experience.
2. Pain Doctor’s online support groups and forums
Pain Doctor facilitates a chronic pain support group online. We want everyone to know that chronic pain affects real people. It is important to us that we offer a place for chronic pain patients (and their loved ones) to share their story and find support.
There are other online chronic pain support groups, too.
These forums are not just for people of retirement age. Caregivers for loved ones can find support and practical suggestions for all types of caregiving issues that arise.
While forums are not the same thing as a regularly scheduled support group, they can provide help for specific questions and issues when you need it.
Caring offers a variety of moderated online support groups that are as specific as caring for a spouse or as general as being a caregiver (with everything in between!).
Facebook is not just a place to share vacation photos. With private groups on Facebook, you can connect with caregivers all over the world. While private groups are moderated, most public groups are not, so be very careful about what you share. Everyone can see a public post.
Just as in real life, it can take several tries to find an online community that fits. If the first online group you try does not work, do not give up. There is a group out there for everyone.
How can I find local caregiver support groups?
For in-person, local support groups, contacting the major organizations for your loved one’s illness is a great first step.
Some of the most common long-term illnesses support groups can be found at one of these organizations:
- Alzheimer’s Association
- National Stroke Association
- National Parkinson Foundation
- American Cancer Society
You can also ask your loved one’s doctor or inquire at the local hospital. Libraries often host support groups, as do churches, so inquiring there is a good start.
The Family Caregiver Alliance offers a good mix of online support with blogs and resources and in-person meetings that you can search for.
If you need a variety of resources for an aging loved one, including support for yourself, the Eldercare Locator can help. This site offers tools, information, and practical resources for things like financial assistance, respite care, and home repair and modification.
Tips for running caregiver support groups
If you cannot find a local or online caregiver support group and you know there is a need, why not start your own? Here are five tips for running caregiver support groups.
Tip #1: Decide what your focus will be
What do want your caregiver support group to focus on when you meet? This will be different for every group. In a large city with lots of options, you can keep the focus of your support group narrow, but in a small town, you may want to open it up to a wider audience.
Some functions of a caregiver support group include:
- A check-in for its members
- A resource for getting help with reporting practical issues that arise in dealing with insurance, doctors, etc.
- An exercise group to keep members active and healthy
- A safe place to talk about the challenges of caregiving
- All of the above
Whatever your focus is, know that it may change and evolve as the group does.
Tip #2: Put someone in charge
Just because you started the caregiver support group does not mean you have to run it, especially if organization is not your strong suit.
Find a member with strong planning and organizational skills. This person will be in charge of scheduling and running meetings, organizing outings, and inviting experts to talk to the group. A good support group leader is friendly and sociable, able to keep the meetings on track while still allowing everyone to speak and feel heard. If this does not sound like you, look for someone else.
Tip #3: Choose a location
Your location will depend on the size of your group, the activities you are planning, the frequency of your meetings, and your budget (if you have one). Free meeting places are ideal and can include:
- Community centers
These locations tend to have meeting areas of multiple sizes and are usually free (or very affordable). Keep in mind that your meeting location needs to suit your agenda. If you are hosting a talk or showing a movie, it is important to not disturb other activities. Likewise, if your conversations are sensitive and confidential, privacy is important.
As your group grows your needs for meeting space may change. Look for a space that offers room to grow.
Tip #4: Advertise for members
You have a focus, a leader, and a space. Now all you need is caregivers! There is a variety of ways to advertise without spending a penny.
- Design a poster or flyer and post in libraries, schools, doctors’ offices, and local stores
- Ask for a free mention on local TV and radio stations
- Create a new caregiver support group in Meetup
- Use social media to advertise
- Ask other support groups to tell their members (a good option if your group has another focus or meets on another day or time)
- Reach out to local clinics and tell them about what you’re offering an how it could help their patients
Try not to use your personal email when you advertise. Consider setting up another email account specifically for the group.
Tip #5: Schedule meetings
You don’t need to have a year’s worth of meetings and speakers lined up before you begin, but it is very helpful to have a set date and time scheduled for at least six months before your first meeting. Consistency is important, for the entire group and individual caregivers.
Additionally, consider the schedule for each meeting. Caregivers have a lot of uncertainty in their lives on a daily basis. A structure can be helpful for both organizers and group members.
An article at HealthCentral.com suggests the following meeting schedule:
- Welcome and announcements: 15 minutes
- Program and speaker: 45 minutes
- Questions and discussion: 30 minutes
Offering refreshments at the end of the meeting encourages members to get to know one another. Ask for volunteers to take turns bringing in refreshments. Alternately, put a jar out labeled “refreshment fund” and ask everyone to give a little bit, if they are able.
It does not matter whether you find a meeting online, visit a local support group, or decide to start your own. The most important thing is to get support before you need it.
If you are feeling the symptoms of caregiver burnout, don’t wait to get help. If your loved one needs more help with chronic pain, you can find a pain doctor in your area by clicking the button below or looking for one in your area by using the tips here: https://paindoctor.com/pain-management-doctors/.