need help communicating my health needs to my RN

[tahselhay]

Help! I am a patient that cant get my health needs met by asking my RN Case Worker to arrange it for me to see a NP, PA or doctor. I had brain surgery 8 years ago to remove tumors n it left my throat parts paralyzed. I was able to qualify for PACE so now I am a participant. I am active physically but have throat spasms that force me to move fast real quick to breath. Good doctors recognize this but I can no longer see good doctors. The RN is convinced that I am only having panic attacks even with the swallow study showing constriction in my throat and my habit of pooling substance before I swallow. I cannot get health care any other way except thru the PACE program here in a small town. The nurses seem to only want to deal with end of life care and not preventative. I dont take the massive amounts of medication they prescribe because its just too much and I cant ever be impaired due to choking risk. I have to constantly be prepared to jump up. I do my part by eating right, exercising and not drinking or smoking but instead of being encouraged to be proactive in my well-being, I am discouraged to seek any kind of medical treatment that doesn't have to do with making me comfortable at the end of life. HELP! How do I talk to this RN that doesn't have the wherewithal to understand my issues of the paralysis after brain surgery

[traumaRUs, MSN, APRN]

Hi there and welcome. Have you tried discussing your concerns with this nurse's supervisor? Or asking for a different RN?

[Whispera, MSN, RN]

how about sharing what you wrote here, with her?

[tahselhay]

There is very high turn over for the RN Case Manager and I am afriad to complain because everybody complains and most are so heavily medicated and just want relief from discomfort n I want long range solutions to my permanent throat paralysis that causes my throat to spaz out from gas unable to escape from my stomach or sinus drainage from above. This sends me into an adrenaline rust to jump up to get breath. Because I am active n work out they just cant wrap their mind around me needing health care. I have tried to tell her. I dont know who her supervisor is except upper management n believe me they are just waiting to replace me with a nursing home patient that is the end of life stage of health care needs, the staff support me tho that see me frequently n encourage me to keep advocating for being healthy. I really tried to find another venue to take care of my health but there was none and the dizzy spells made it unsafe to be alone so I signed up for Elder Care when I turned 55. I dont know what to say but hey Youre truth is that I am a Hypochondriac that has illusions of physical sickness and my truth is that brain surgery cut my cranial nerves which left complications. How do I talk to her when all of our complaints are invalid? (to her anyway)

[Kooky Korky, BSN, RN]

Maybe you could call or write to government authorities (Medicare? Medicaid? state and/or federal Congressmen/women?) if the nurse AND her bosses won't help you.

Try going up the chain of command where the nurse is employed. Be nice or they might drop you as a patient. Maybe that would be good and maybe not. I don't know your whole situation, so you will have to decide how hard to push this.

What do you have in mind as a treatment for your condition? What has the surgeon said in the past?

Try sitting the nurse down before you do anything else and look her right in the eye, lightly hold her hand (don't be threatening or restrict her movement), and try again to make her understand. If she doesn't, go to her supervisor.

Good luck.

[jadelpn, LPN, EMT-B]

If you are part of Elder Services, you need to speak with a case manager at that level. To have discussion on your needs not being met. You can also see who the Elder Services advocate is for your area. Sometimes called omsbudsman. This all has not a thing to do with the agency who is supervising your care, rather the Elder Services division of your area.

It may be better for you to do outpatient at the local clinic level. It may be better for you to have a completely different agency. If you have insurance, then perhaps the PACE people are not great for you. (Not that it doesn't have other stuff that could be helpful to you) But your health insurance could allow you to have someone else.

I would advocate for a speech swallow exam--and ongoing support which is something most home health agencies have through their occupational therapy departments. And there's other ways of receiving nutrition. Again, something to consider and talk to an advocate about.

I would also see about seeing a neurologist, as the medications you describe as not taking may (or may not) help you with this issue. But you need to see about that.

Brain disorders and injury can reflect as mental illness. But they are 2 entirely different things. And you need to have a fresh perspective on how to manage your care so you can function.

If you are "end of life" (and are you?) palliative care is found in most towns (or the town over?) and are instrumental in managing your care. So hookup with one on your own.

Do you have family support? Husband/ Wife/SO, adult kids, parents.....you need them to be on board with you (or one of them) and let them assist you.

Loss of control is scary. But you need an advocate that is going to present a plan of care that works for you and your function going forward.

Best wishes!

[iluvivt, BSN, RN]

great advice jadelpn

[littlelimabean01, LPN]

Jadelpn, stated what I would recommend an ombudsman. I was doing a little research on how to obtain one and basically you can go to Google, type in" PACE or managed care and the state you live in and ombudsman". You will be able to contact someone who is an impartial individual who will act on your behalf. Your story hurt my heart. I am glad that you are being proactive in the care you are receiving. You deserve better. God Bless You.