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Oh, this is a fantastic gig!
I have a few quick nursing ideas to keep in mind:

1. Safety / mobility: On the flight, get him up and moving every 1–2 hours. Wear compression socks on the plane and when out and about. Good supportive shoes matter, especially ones that can be loosened if his feet swell. Plan for wheelchair or other mobility support as needed, and know where bathrooms are whenever possible.

2. Medications: Keep all medications and essential medical supplies with you in carry-on luggage, not checked bags. Bring extra medication in case of travel delays. Have an updated medication list with doses. For anything that needs temperature control, look into travel thermoses specifically designed to keep medications at a safe temperature for extended periods.

3. Energy: Plan around endurance. Build sightseeing into blocks with scheduled rest, meals, bathroom breaks, and recovery time. Plan for extra rest after arrival and keep the schedule flexible based on how he is doing that day.

4. Hydration / nutrition: Electrolyte packets can be mixed into water bottles and work really well for long flights and travel days. Various high-protein snacks also work well.

The big nursing issues I would be thinking about are falls, fatigue, hydration, mobility, medication access, and blood-clot prevention.

Have fun with your planning. Remember me if you need a replacement for some reason :)

I am new as well to Advocacy but 40 years previous business knowledge. That is I owned my own place during that time. It would be easier for you to just call me at 513-673-6987

D. John Bishop

Congratulations on launching your business and thank you for becoming a patient advocate. I am a nurse and after many years of advocating from the bedside, I just recently started my own practice as well. I have yet to have a client that is not a friend or family member so I may not be able to offer you much mentorship but I would be happy to chat about ideas or goals for your practice.

Try reaching out to Natasha Romantal, you can find her by searching for her on the GNA database.

I know patients using this approach. I understand it is expected to be less effctive because some of the cromolyn is too close to meals. but people who can't do 4oz at a time or have otherchallenges around the normal dosing.

I take mine in gatorade (can't do striaght water) but do the 4 oz liquid to 1/2 tube cromolyn 4x daily which works for me.

I put some comments down in the previous post! If you are not clicking and reviewing this tool with more information on facilities… you are missing it!!! Facilities- I try to visit where I can, even if I don't have a patient. I want to know the options… And if a hospital Case Manager gives someone a list, please tell them they absolutely need to go SEE it… listen, smell and talk to the residents.

Sue thank you so much for your words of wisdom it really helps a lot. I may just take you up on your offer to talk soon.

Aimee,
Wow, you have already done great work. You built enough trust that he agreed to return. This is an incredibly complicated situation, so I would break it into small steps. By the end of this post I think you will know why his brain is flight out of the survival responses of fight, flight, or freeze.
Stabilize his body first.
Ask for a formal addiction medicine consult along with palliative care or a cancer-pain specialist. Fentanyl withdrawal, opioid tolerance, cancer pain, fear, and other medical factors are all overlapping. He needs specialists who can treat the addiction, cancer, and cancer pain all together, not as separate problems.
Give back as much control as possible.
In my nursing experience, anger was often the visible layer covering fear and loss of control. Offer small, genuine choices whenever possible. Even small choices can help someone feel like a person again.
“Would you rather talk now or after you rest?”
“Would you like me to stay while the doctor explains this?”
“Would you like to focus on today’s plan or tomorrow’s plan?”
Speak to the here and now.
When someone is in severe pain, withdrawal, fear, or survival mode, warnings about what might happen months from now mean very little. His brain may only be thinking, “How do I get through this moment?”
Try:
“Let’s concentrate on getting you through today.”
“What is making this feel unbearable right now?”
“What would make the next two hours more manageable?”
Do not turn leaving into a power struggle. It is his right to choose.
If he wakes up wanting to leave and has the ability to make that decision, be honest without judging or shaming him:
“I really want you to stay because I am concerned about you. I also hear that you want to leave. Before you go, can we make a plan so you do not have to start from the beginning when you are ready to come back?”
Give choices:
“Would you like me to schedule the next appointment, or would you rather we have someone call you?”
“If you leave today, may I call you tomorrow?”
Most importantly, let him know the door remains open.
Build one coordinated plan.
If possible, have an oncology navigator, addiction specialist, pain specialist, cancer specialist, case manager, social worker, and recovery specialist, and yourself as the person to coordinate the pieces.
He may feel as though he has failed at life, failed because of the addiction, and now his body has failed him too. Addiction is a medical condition, not a moral failure. His response to this overwhelming cancer situation may be dangerous, but it is also understandable.
The immediate goal may not be getting him to commit to months of treatment. It may be helping him feel safe and in control enough to take the next step.
When I was an oncology nurse, I cared for patients in similar situations. It can be a long roller-coaster process with plenty of ups, downs, side-to-sides, and even a few pirouettes. This is a tough situation for your patient and for you.
Please reach out if you want to talk through any part of it. I am happy to help.
Sue

This is great tool! I have looked up many of the ALF and memory care units in my area with the state board before touring. People would be astounded by how many «5 star» Google reviewed facilities have multiple fines, deficiencies, and complaints listed with AHCA, many of which are still open or are detrimental to people already living there. Thank you for sharing this tool, would love to see SW Florida included

This is SO on target! I am sorry I hadn't made it to this post earlier!
I fully agree with your post and the need for choices and autonomy of the patient. They are still a person! Though my dad made it to 95, his cognitive ability was better than most 20 years younger then he… with a very mild cognitive deficit that frankly most see in their 60s. He was still mobile and could participate in life. His biggest issues were his hearing -which isolates people- so I was able to get him fitted with hearing aides that helped. However, his O2 hose- that was the enemy. (ie falls) Some of the family felt a nursing home would have been best, it likely would have not stopped the falls, but it would have broken his spirit.

Often we need to ask, best for whom? No judgement, but if it isn't best for family, then look at it as a challenge to find what is best for both...patient and family. Break up tasks, enlist a friend or neighbor or maybe a day program a couple days a week can break things up. Doing a placement and then watching someone going downhill and lingering at a facility is even more difficult, in my humble opinion. Then- family stops visiting. That is very heavy for everyone. It «takes a village» is true here as well.

Assisted living inspection reports are managed by the states. I will be connecting my free tool to all states in the future but it takes some time! Right now, I have CA and AZ. Comment below with the state you would like to see next. I am really excited about the plain language summary of deficiencies from the tool. Have you guys tried it yet? How can I improve it?

Hi, I’m Mel, a board-certified Adult-Gerontology Acute Care Nurse Practitioner. I have 20 years of experience in endocrinology, intensive care, and diabetes management. I also have extensive personal and professional experience supporting individuals and families affected by dementia. I am based in the Chicago area and offer self-pay services; I do not accept insurance. I would be happy to partner if self-pay is an option for you.

Hi Xena,
I am not in the Chicago area but may be able to help virtually if the clients are in a position to do so. Feel free to reach out if I can be of assistance.

Hi Xena,

Thanks for reaching out! I live in a northern suburb of Chicago and have extensive experience with Diabetes Management.

I offer a 10-minute complimentary consultation to clients and work both in person and virtually. I'd love to discuss more to determine if I'm a good fit for collaborating with you and your client.

I'm getting married in 2 weeks and will be available to take on new clients after 9/7.

Meanwhile, I hope you find some great advocates who can help!

Marilyn Kier, BCPA, BCTMB

Hi all! Mallory from the Virginia side of the DMV. I work primarily with complex, chronically ill patients and love a medical mystery! Feel free to reach out to me directly if you have a weird one — I might have some resources or suggestions!

Hi everyone! My name is Aimee Dundas, in Litchfield Park Arizona. I’m excited to introduce myself and become part of this community of patient advocates and navigators.

I have more than 15 years of experience in oncology and hematology, with a background as a Medical Assistant, Oncology Patient Navigator and Principal Illness Navigator. Throughout my career, I’ve worked directly with patients and families as well as behind the scenes with providers, insurance companies, treatment teams and community organizations.

Today, my work has expanded beyond oncology to include patients facing chronic and serious illnesses. I especially enjoy taking complicated situations, figuring out where the barriers are, and helping patients and families find a path forward.

I currently serve as Director of PINs with Cancer Care Concierge™ and Chronic Care Concierge™, where I also mentor navigators and continue working directly with patients. I am also the creator of the CCC™ Patient Navigation System™, which grew out of years of seeing how difficult it can be for patients and caregivers to keep track of everything involved in their care.

One of the things I value most about navigation is that none of us knows everything. We each bring different experiences, resources and areas of expertise to the table, and we become better advocates when we learn from and support one another.

I’m looking forward to getting to know all of you, learning about your areas of expertise, sharing resources and experiences, and hopefully collaborating along the way!

Hi everyone! I'm Tiffany Hare, I am new to GNA but not new to patient advocacy. I am a nurse in Southwest Florida with many years of experience in case management, behavioral health, and hospice care. I have witnessed families struggle to find answers and become overwhelmed with our fragmented healthcare system, and have personally experienced the difficulty of navigating for my own loved ones. As a nurse, I have said for years, I am not tied to any one company or hospital, I am dedicated to my patients first and foremost. I decided to take a leap of faith in June and start my own advocacy practice, Rooted waters nurse advocates, to help families navigate our complex health system, review records, and help them find their voice for their loved ones. I am currently pursuing my BCPA certification and am excited to be a part of GNA. I look forward to learning and collaborating with you all!
Tiffany Hare
Rootedwatersnurseadvocates.com

What is «vibe coding?»

Yes, I'm interested in feedback! Try it out and let me know what worked, didn't work so well, which features should be added! My goal is to create useful, no/low-cost tools for the important work patient advocates do!

Has anyone tried this out?

Hi Rebecca,
I’m in Orange County and would love to connect. I tried emailing you but it was returned as undeliverable.
My email is amy@entrustedhealthadvocates.com

hi Rebecca! We've got quite a lineup of advocates in the LA area.
I'm used the PA360 message feature to these advocates and encourage them to join this post. you can also do the same- use this search,and use the 'write a mesasge" to connect to any advocate.

gnanow.org/advocates?search_type=speciality_id&speciality_id=18&locations=Los+Angeles%2C+CA%2C+USA

I am in CO, I’d be happy to connect.
I specialize in cancer and survivorship.
There is a webinar I am doing that you might be interested in participating as well, since it involves billing.

Here is the link:
triagehealth.org/webinars/medicaid-changes-patients/

~Katherine

THANKS fo rsharing!