How Do We Care for the Caregiver?

How do we care for the caregiver?

GBS, CIDP, and variants such as MMN, not only affect patients but can have a huge impact on the entire family. Primary caregivers are so focused on caring for the patient, and often barely have time to notice that their own lives have been turned upside (and sideways) as well. More importantly, these conditions, particularly GBS, can happen so suddenly and unexpectedly, caregivers barely know how to pronounce the word Guillain-Barre (Ghee-yan Bah-ray), let alone know specifically what they will need help with!). For caregivers to maintain their mental and physical health, it is vitally important for them to have a community to support them along the way .

Asking for help is often the most difficult step for caregivers, but it is not at all a sign of weakness. You and your loved one are not alone; there is a community of people willing to assist you. If you know a caregiver, don’t ask if they need help, ask what you can help with. If you are a caregiver or you know a caregiver in your family or community, here are some small ways to offer help, or find help, that can have a big impact. 

What can I do?

  • Makes meals! Cooking dinner can take an hour out of a caregivers’ day, and being responsible for all three meals can take even more time. Consider cooking meals or doing grocery shopping to help take the stress off.
  • Child and pet care can be extremely difficult for a caregiver, especially when the caregiver is also working a full-time job. Even if they are working from home, this type of support can be a very welcome reprieve! Help with morning drop-off/afternoon pick-up or give them a few hours off on the weekend as you watch the kids. Take their furry friends on walks when you can or even drop them off at the vet or groomer. Caregiving demands a lot of juggling, so give them one less thing to juggle.
  • Helping with the dishes, doing light cleaning, and other housework is a great way to help a caregiver. This can also include laundry, mowing the lawn, and other tasks that help keep the house in order. While the caregiver is taking care of care, doctors’ appointments, and other important activities, helping with housework and lawn care can be a big burden lifted off of their shoulders.
  • Many caregivers have full-time jobs in addition to caregiving, making it impossible for them to do everything. Again, even if the caregiver is working from home, new and demanding responsibilities can be overwhelming. Offer to drive their loved one to the doctor or physical therapist. This allows them time to catch up on other necessary tasks, and also gives the patient a new person to talk to during the day. Patients often feel isolated from their communities during treatment, so this is a great way to help the caregiver while also helping the patient.
  • Educate yourself about the disease. GBS, CIDP, and MMN are all rare diseases with fewer than 20,000 cases diagnosed in the US a year. This means that both the caregiver and patient have most likely never come in contact with someone who is in a similar situation, making it difficult for them to explain what is happening to friends and family. Educating yourself takes that burden off of them and allows you to get a better understanding of their diagnosis and treatment.

Where Can I Find Help?

Family and friends are a great place to start when you need help. Many family and friends are willing to help; they just don’t know how to. Let them know specifically what tasks would be the most helpful to you. Giving them a schedule of appointments you need help with transportation to or days when there is too much on your plate to make a meal will show them where their help is needed the most.

Another great place to look is high school volunteer programs, college community service clubs, and local Greek organizations. These are great places to look for energetic students who want to make a difference in their communities. Tasks such as childcare, lawn care, dog walking, and even driving to appointments are tasks that are easy to hand off to helpful students of your community and will make a big difference in your schedule. Get in contact with Student Activities Coordinators in your area to see if there are students that can assist you. Consider sharing your need for help with your religious institution as well. Members are often more than willing to drop off a few meals, assist with childcare, and more.

Where Can I Find Help?

Family and friends are a great place to start when you need help. Many family and friends are willing to help; they just don’t know how to. Let them know specifically what tasks would be the most helpful to you. Giving them a schedule of appointments you need help with transportation to or days when there is too much on your plate to make a meal will show them where their help is needed the most.

Another great place to look is high school volunteer programs, college community service clubs, and local Greek organizations. These are great places to look for energetic students who want to make a difference in their communities. Tasks such as childcare, lawn care, dog walking, and even driving to appointments are tasks that are easy to hand off to helpful students of your community and will make a big difference in your schedule. Get in contact with Student Activities Coordinators in your area to see if there are students that can assist you. Consider sharing your need for help with your religious institution as well. Members are often more than willing to drop off a few meals, assist with childcare, and more.

Apps and Websites that help caregivers find help:

  • www.mealtrain.com allows friends and family to assist with making meals. On this site, you can choose the days you would like assistance, where meals can be dropped off, and even add your families’ likes, dislikes, and allergies.
  • Nextdoor App connects caregivers with their neighborhoods. You can join groups, talk to other caregivers in your area, and even ask for help with small tasks around the house.

Join us this June for a “Caring for the Caregiver” Zoom Coffee Chat. All caregivers, and those who are supporting caregivers, are welcome to join. Stay tuned for upcoming date and time.

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