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175. What you need to know about being a long-term care advocate for your loved one
Manage episode 397721015 series 3363502
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Stroke recovery is a rollercoaster. It’s easy to think there’s just the stroke itself and the recovery afterward. However, we’re going to hit speed bumps. Just when I thought things were starting to get more stable, Mark got sick with a stomach virus and had a seizure on January 3rd. He was dehydrated and had a high fever, and seeing someone have a seizure was terrifying. He was hospitalized for several days and then had to go back to rehab.
Being a caregiver for someone with a chronic health issue is no easy task. It's important to be organized, advocate for your loved one, and stay flexible. At the hospital, it’s important to pay attention – in my experience, they don’t always read the notes. It’s also helpful to have a medical card with any allergies and medications listed.
One difficult moment was that I was supposed to travel the week after Marks’ hospital stay. My children begged me to go, and I knew they could handle things at home. But I felt guilty leaving Mark, even for a few days. In the end, I'm so glad I went. I got some much-needed rest and relaxation. It's important to remember that it's okay to take care of yourself, even when you're caring for someone else. If you don't take time for yourself, you'll eventually burn out. Don’t let your guilt win.
Caring for someone with a chronic illness can be a lonely journey, but it's important to stay positive for yourself and your loved one. There will be good days and bad days, but there will also be moments of joy. Focus on the good times, and don't give up hope. Also remember you’re not alone, there are millions of caregivers in the world experiencing the same situations and feelings.
Topics discussed:
- Chronic illness
- Progressive disease
- Long-term impacts of stroke
- Advocating for loved ones
- Caregiving
- Maintaining a positive mindset
- Managing medications
Takeaways from this episode:
- Organize medical records, medication schedules, and contact lists for your loved one with chronic illness.
- ‘Vial of life’ provides medical information cards for emergencies when the patient is unable to communicate their needs to first responders.
- Don’t be afraid to delegate tasks and ask for help from friends and family. Everyone needs a rest, so don’t let guilt win.
- Take things one step at a time, be flexible, and celebrate small victories.
- The situation can be tough, but don’t let the negativity win. Lean into your support system.
Resources mentioned in this episode:
Get my new book, 'Surrounded by Love: One's Family Journey Through Stroke Recovery': https://loriwilliams-seniorservices.com/book
To suggest a topic, be a guest or support the podcast, please email Lori@Loriwilliams-seniorservices.com
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Vial of life:
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