Dear Caregivers,
Caregiving Insider is built for YOU!
The medical system is built for the health of the patient. During my journey as a caregiver, I quickly learned that the patient spends more time at home with their family caregiver (non-medical person(s)) than they do their medical care team. Yet, very little attention is given to the caregiver on how to best care for their loved one, their household or themselves during what is perhaps the most difficult time of their lives. We’re working to change that!
It is my sincere hope that you find something here that will aid you on your journey of caregiving and self-care. Don’t forget that your health and well-being are vital to the health and well-being of your loved ones. You must take care of yourself throughout this process.
We’re building a community of caregiving resources for some pretty incredible humans.
The Role of a Family Caregiver
Caregivers play a cricital role in the health, welfare and recovery of their loved ones. They spend more time with the patient than the medical team. Caregiving is multi-faceted and time consuming.
Physical Health: A caregiver’s responsibilities can be very demanding and emcompass a wide range of light medical and non-medical tasks that impact the overall health and potential recovery of their loved one. Duties may include: administering medication, cleaning medical devices, wound care, tracking things like food intake, side effects, healing rates, progress or deterioration rates, bathing, assisting with mobilization and transportation and much more.
Emotional & Mental Health: In addition to physical care, caregivers provide emotional and spiritual support that helps the patient maintain their emotional and mental health. They are the patient’s primary, and often their only, companion.
Advocacy: Caregivers are often the people advocating on behalf of the patient to the insurance companies, resource centers and keeping the otherwise disconnected medical team connected. Caregivers spend an inordinate amount of time learning the ins and outs of the medical system in order to best advocate for their loved one.
Watch Episodes: Rare, Well Done
Our founder, Ammie had the opportunity to host a web series for Shining Through CIDP called Rare, Well done.
CIDP is a rare autoimmune disease that, among other things, causes nerve damage that affects the use of feet and hands. In this series, she also served as the caregiving expert assisting Wayne with accepting help from his caregivers and assisting Amanda’s friend Kara in supporting her through living life as a vibrant 30 something in the city.
Both Wayne’s and Amanda’s story have components that are universal to people living with a debilitating diagnosis.
This series is important because it focuses on how the whole family unit (including close friends) supports the patient. We’re thrilled to see caregiving take a more prominent part of the patient narrative.
Episode 1: Meet Wayne
Episode 2: Meet Amanda
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In the art of full disclosure, some of these links are affiliate links which means we may receive a commission if you choose to make a purchase. It doesn’t cost you any more, we’re simply get rewarded for sharing incredible resources that we’d share anyway. A good partnership is a win/win. Any item listed is meant to serve as a starting point in your research for healthy options. Please consult your health care providers before integrating any food or wellness item listed into your routine or that of your loved one. Items shared should not be considered medical advice.
Food
As a caregiver, you often eat on the road or at hospitals. Simplifying meal time so that a healthy choice is the easy choice is a must.
Daily Harvest
What I love about Daily Harvest is having healthy meal options in the freezer. You don’t have time to be a short order cook.
Pre-Made Protein Shakes
There will be days when you don’t have time to make a healthy meal. They also makes a great creamer substitute for hospital coffee.
Small Travel Cooler
ALWAYS have snacks and cold water on hand. Appointments run long. Having healthy snacks with you is LIFE SAVER!
Packing for a Hospital Stay
Our packing guide says pack all the things! Travel with the big suitcase. Make sure that you have what you need for comfort & rest.
Bluetooth Eye Mask
This mask allows you to play meditation music that helps drown out the hosptial noise without disturbing the patient.
Hanging Organizer
Digging through a messy suitcase can be frustrating. Take items straight from the suitcase to the closet cubby for easy access.
Toiletries Bag
I have this exact bag and it has traveled sooo many miles with me. Its held its form and still looks great. AND It holds A LOT.
BOOKS
Here are a few books to help you track, process and guide your loved ones through this difficult time. The diagnosis affects the whole family.
Planner
A centralized place to track goals, appointments, wins, etc. Even if you use a digital calendar, this is a value add in tracking life.
For the Kiddos in the House
Children in the household need to be reminded that even though the majority of the attention is on the patient, that they are still worthy.
Reconnecting with YOU
Regaining control of your life, no matter the circumstances, time constraints and emotional overload. Make time for you, again.
Podcast Coming SOON!
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