July 27, 2021
The diagnosis of a progressive disease can be overwhelming. There are so many factors to consider – right from the start – that it can lead to a mix of emotions from feelings of confusion, helplessness and even anger. What should I do? What do I do first? What if I am wrong about _____________ ? You fill in the blank.
Let’s be honest about this. For most of us, these are uncharted waters. Even if you are a medical professional or you have cared for a loved one in the past, the information changes so fast and is so specific to the diagnosis that it can feel like you need a crash course in the disorder. And – there is the fact that everything is different when it’s someone that you love.
This may be one of those cases where “going it alone” is not advised. Being able to check in with a support group who understands your role can prove to be one of the best tools that you have. You can get information, support and even validation that you are doing everything that you can to help your loved one receive the best care possible.
Support Groups Are People Who Understand
One of the common misperceptions of joining a support group is that it is just a place to let off steam. But that doesn’t need to be the case. According to a study by the National Institute of Health, support groups have a proven benefit to caregivers and patients alike. Programs designed to support caregivers of people with Alzheimer’s disease (AD) or other diagnosis of dementia can help improve the quality of life for the caregivers and delay nursing home placement of the patients, two new studies have found. Plus, it also helps reduce the incidence of depression and feelings of being burdened for caregivers.
Getting More Information From Those that Know
A good support group focused on your needs or topic can provide a wealth of information from people who have experienced what you are experiencing. The folks in the group have the time to be able to truly listen to your concerns and may even be able to steer you toward additional resources that can help you fulfill your needs or perhaps gain a sense of perspective.
– Support groups by their very name offer emotional support to their members. Sometimes just knowing that there are other people that you can talk to – who have experienced what you are experiencing is comforting and can help you feel less “on your own”.
– Support groups are frequently moderated by the subject matter experts such as the Alzheimer’s Association , American Stroke Association , Parkinson’s Foundation as well as the Silver Century Foundation, a group that addresses topics surrounding aging and the many forms of dementia.
Reduce Anxiety, Stress and Social Isolation
A recent survey by AARP (American Association of Retired Persons) found that family caregivers in the US were more likely to report loneliness in comparison with those in midlife or older people who were not family caregivers (prevalence of 42% compared to 34%).
Factors related to the caregiving role, such as caregiving stress, also increased the likelihood of experiencing loneliness. Shrunken personal space and diminished social circles caused by the demands of caregiving contribute to the feelings of loss both in terms of the diminished social capacity of the patient but also by the loss of outside social relationships.
The introduction of a support group creates and supports an expanded social circle that understands the limitations of intense caregiving. And while family and friends may be a comforting presence, their focus is typically on the care recipient and on the caregiver to a lesser extent. The support group offers the caregiver a safe environment in which to bounce off ideas, gain information, hear the latest news or to just plain vent in a non-judgemental forum.
Regain a Sense of Control
One of the difficulties in prolonged caregiving is that while your time caregiving is regimented, it is at the same time unpredictable. Depending on the demands of the recipient, caregivers need to maintain vigilance for changes in the care recipient’s health, mood and safety. Exhaustion and burnout are not uncommon.
The benefit of a support network is that they can help you spot the signs of stress, exhaustion and burnout and encourage you to practice self care. Members provide emotional support to one another, learn new ways to cope, discover strategies for improving their condition and help others while helping themselves.
Find the Support Group that Fits Your Needs
There are support groups that fit virtually everyone’s needs. As a by-product of Coronavirus protocols, virtual support groups have taken a very prominent place in caregiver support.
There are now many virtual forums where folks can gather on one of the on-line meeting platforms to meet, form relationships, and seek information and reassurance. In the Bucks County/Philadelphia area, those looking for a forum that focuses on Memory Care and the many forms of dementia can dial into one of the area’s pre-eminent experts. Maggie Sullivan of the Silver Century Foundation has devoted her life to helping those who help Alzheimer’s patients.
Maggie will be conducting a Caregiver’s Support Group at Chandler Hall, the first Friday of every month from 1:30-3:30p. Maggie is also providing a free, virtual support group on the first Wednesday of every month. Click here to learn more.
Remember – we are all overwhelmed at times. But when we take advantage of the resources that are available to us, we become smarter and maybe a little better able to recommit ourselves to our role as caregiver to those who need us. We hope to see you at Maggie Sullivan’s Caregiver Forum.
Join our Caregiver Support Group
If you are caring for someone with dementia, or if you’re worried a family member is showing signs of Alzheimer’s or other dementia illnesses, consider joining our Caregiver Support Groups. Led by Maggie Sullivan, our groups meet on the first Wednesday of every month online, and the first Friday of every month in person at the Wright Meeting Room on our campus from 1:30 – 3:30 pm. Just click the button below and find out how to sign up. You’ll meet others also caregiving for people in similar circumstances, and learn ways to make this journey easier for everyone.