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Embracing Caregiving: Honest Words From A Caregiver

Insights from a recent Our Tribe recipient and Cocktails & Caregivers Gifts & Grants Coordinator, Kristina Nemetz.

1. Join A Caregiver Support Group(s) Right Away 
I did not realize that I was a caregiver until six years into my journey. I saw myself as just a parent, or at best a parent of a special needs child. Being a caregiver to someone with a chronic condition is such a unique experience. I wish I had joined caregiver support groups early on so I could have met other caregivers who understand.

Click here to join the Cocktails & Caregivers: Caregivers & Chaos Facebook Group (for caregivers only) or follow us on Instagram.  For more information on how to connect with the organization visit cocktailsandcaregivers.org or email ashley@cocktailsandcaregivers.org.

2. Apply for Any and All Sources of Funding and Programs
Initially prioritizing my pride over accessing available financial support programs during caregiving was a mistake. I’ve learned the importance of utilizing all entitled resources, as caregiving can significantly strain finances.

With the support of our generous donors and Martini Club Members, our selfless Our Tribe Grant Recipient has received $2,000 in rental assistance to ease her burdens as she cares solely for her daughter. Click here to learn more about Our Tribe.

3. Seek Out Any Caregiver Training Program
I wish I had had the opportunity to first understand that I was and continue to be a caregiver, and to avail myself of one of many caregiving programs available in-person and online. It would have helped me to understand my role and give me the practical quasi-nursing skills I needed. 

Our community is vast and growing every day. If you need a resource we strongly encourage you to post a question in our community page or reach out so that we can ask for you. Please know you are never alone and we have watched so many amazing connections and friendships form from this organization. You are not alone.

4. Join Condition-Specific Organization
General caregiving groups are great, but meeting with patients and caregivers who have actual lived experience with a disease or disorder cannot be beat. Some resources and tips can only be obtained from those who have specific experience.

While they say never to go down the Google Rabbit hole, once you have a diagnosis – it can be your biggest power tool and friend. Scour the Internet, ask questions in forums, and connect with whatever groups you can find that have experience or may be able to recommend experts, alternative medical options, and more.

5. Register with the Patient Navigation or Resource Navigation Department
Caregivers are excellent researchers when it comes to finding the resources that they need to best care for their loved one. However, other responsibilities, especially the actual caregiving itself, can slow down or stop this research. The Patient Navigation at your loved one’s hospital, local agency or treatment center can have a wealth of information to support both you and your loved one.

The medical world is fast paced and busy. Once you are in this world, it is hard to miss the packed waiting rooms and long lines in hospital cafeterias. Most hospitals these days offer nurse navigators or other support services that assist with connecting patients with the necessary resources required during treatment. 

6. Recognize that You are Not Superhuman, and You Are Doing Your Best
We did not create our loved one’s malady, and despite best efforts, we cannot always resolve or “cure” what ails them. As painful as it is to accept this, we caregivers must acknowledge that we are doing the best we can, no matter the circumstances or results.

One of the missions of The Cocktails and Caregivers Foundation that keeps us going. We receive hundreds of stories each year of selfless men and women, wives, husbands, sisters, brothers, mothers, fathers, daughters, sons, and friends who are putting their lives aside and passionately caring for their loved ones as they face the unimaginable life changing situations. While we may not all be superhuman – we have the privilege of supporting many real life superheroes.

7. Be Direct and Open with Healthcare Professionals About Your Situation as a Caregiver
Although it’s important for healthcare to recognize caregivers, this isn’t always the case yet. Many caregivers feel overlooked due to overwhelmed healthcare systems. I would advise openly sharing caregiving details with providers to improve care planning and relationships.  This is the only way to craft a workable care plan and build a healthy rapport between the caregiver and healthcare professional. 

Speak up and speak often. Asking for help is hard, but admitting the need for help or clarification is essential when navigating the thousands of doctor visits, appointments, treatments, pharmacy visits, physical therapy sessions, and so on. Many caregivers must figure out keeping full-time careers to maintain health insurance and caring for children or other loved ones at the same time. It is okay to be direct, ask for clarification, or assistance.

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