Struggling with Healthcare

Cynthia1346

Hello, I am new to posting. I live in Chicago with my mom who suffers from late onset Alzheimer’s. She was diagnosed in 2016 after showing signs of hallucination. She is now 88.

My questions are; Is there advocacy to turn to when you feel lost with healthcare providers. If she is ill they treat symptoms only and send you to the ED or Urgent Care rather than asking to see her. How do I know if it’s just more confusion versus an infection? Why am I the one diagnosing her and where is there a place that can treat my mom consistently? She is a Northwestern Patient.

SusanB-dil

Hi Cynthia - welcome to 'here', but sorry for the reason.

The healthcare system needs some help. However, you probably need to get a specialist on your team. Does she have a primary care doc you could check with? We also have a neurologist on our team. Preferably one who is familiar with the elderly and dementia patients.

Sorry you are dealing with 'this'…

harshedbuzz

@Cynthia1346

I'm sorry you find yourself in this situation. Unfortunately, owing to changes in the way medicine is practiced currently, this is the new normal. Even if you have a regular PCP practice, and there aren't enough PCPs to serve all who need one especially in smaller towns and in states that didn't expand Medicaid where hospitals closed and practitioners left, it can be hard to be seen on an emergent basis.

I have this with my own mom (no dementia) who is 86 and has a lot of health issues. I have had to accept that despite my lack of medical training, as her advocate I am the lead in her care. We've been to the ER about 4 times this year— 3 of those times we were turfed by her PCP or pulmo and the other I thought she was having a heart attack. It's frustrating.

My mom's been getting UTIs. I have testing strips to use, clean catch gear and an on-call number for her urogyn to get a prescription and bring a sample for culturing. If this is your situation, ask her PCP if they'd be comfortable with this.

My friend signed her mom up with hospice as soon as she qualified in order to get care that came to mom. If your mom's later stage, that might be an option as well.

HB