Frustrated with the system - Alzheimer's Disease & Dementia Message Board

Turquoise · 03-09-2007, 12:43 PM

Just spoke with the nurse at my MIL's assisted living facility. She is in a special alz. unit (locked). The nurse told me that she is going to bed at 8 p.m. and sleeping until noon. MIL has been there since October and before that she always slept until noon.

But the nurse was concerned about the amount of sleep and that she didn't think she needed a sleeping pill every night. Last month we had the Dr. prescribe an "as needed" sleeping pill so the staff could give her something if she wandered at night.

Well, the nurse told me my MIL is ASKING for the pill every night. And, since they are not a nursing home, and under direction of the state, have to give it to her!!!!! I said,"But she has ALZ for crying out loud."

There are so many inequities going on in health care. She has had two hospilizations in the last couple of months. The hosp would not speak to us over the phone because of Hippa regulations even though we have power of attny and health care surrogate forms in her chart. We were out of town during the last hospital stay and she came home with heart meds. her doctor took her off of 2 years ago because they were causing more harm than good.

I have worked in healthcare for 15 years and I am familiar with the system and I am so frustrated at times. This last hospital visit they did thousands of dollars worth of tests and everyone just said, "oh, well Medicare will pay for it, don't you worry about it!! She came home with nothing being wrong.

She is 87 years old and in good health. It's her mind that's gone. My husband and I are exhausted trying to live her life too. By the way, I also take care of my 91 year old mother.

Thanks, I needed to vent. Boy, that felt good.
Have a great day!!!
Turquoise

Martha H · 03-09-2007, 03:04 PM

Turquoise, I'm glad you vented! That's one of the chief benefits of this site. You are so right about the hospital tests and rules.

We were so upset and frustrated towards the end of 2005. My Mom had broken her hip (femur) and after an operation she was sent to rehab, and we were told Medicare paid for 90 days of rehab. Well, who would have thought that she would NOT get 90 days --- but Medicare got a report from the physical therapist stating that my mother ''was not meeting her goals" ..so they bumped her out. At that point Medicare stopped paying for her room and board, but there was no way she could go home - unable to walk (outside of a few steps), unable to remember to do certain exercises a few times during the day, and totally confused about why she was there. That led to the spending down of her savings, eventually Medicaid. But we were so unhappy with that 'not meeting her goals!' Whose goals? She didn't know where she was or why, she HAD no goals. It was their own standards she was not keeping up with. We still think that if they had paid for therapy for a few more weeks, she might have learned to walk again and could have gone back to my brother's house, where he was quite willing to take her, but not if she had to be carried!

The government supposedly does all this to save money - but in the end they now have her as a Medicaid patient and it's costing them a fortune ... with a few more weeks of therapy she might have been on her own, and saved them money. No flexibility! No understanding.

Ouch! now I have vented too. I do so agree that our medical care system needs a MAJOR overhaul!

Love,

Martha

Turquoise · 03-09-2007, 06:16 PM

Martha:
Alz. patients and even some of the elderly are not your average patients. There are special circumstances that apply. If they had thought about that with your mom it would have saved her from going into a nursing home and being on Medicaid.

With my MIL, why would they even think she has enough sense to ask for a sleeping pill?

Who do we write or call to get some of these stupid rules changed? I personally think the Hippa rules are going to drive us all crazy.

We have to take a deep cleansing breath and de-stress!!

Turquoise

janeslk · 03-10-2007, 07:10 AM

Wow, I can't believe you are having so much trouble eliminating a sleeping pill. My FIL is in a lockdown AD unit. He was taking a sleep pill and he was drowsy all the next morning. We asked one of the staff if it could be stopped and it was. What are Hippa rules?

Jane

Turquoise · 03-10-2007, 11:51 AM

Actually I had the wrong acronym, it's HIPAA which stands for Health Insurance Portability and Accountability Act of 1996. Among other things, it protects patient privacy to the point that many primary care doctors and care givers have trouble getting and giving important medical information for patients and loved ones. It's all those forms you sign at all the medical places you go to.

It's completely out of hand because it gives a whole new area where people can sue so they've gone overboard in protecting any information.

If your FIL is in a nursing home you can request it stopped but in an assisted living facility a doctor has to ok the stoppage. With my MIL, she still has the right to ask for the pill if it's rx'd PRN (as needed). My beef is they didn't tell us any of this until I asked why they were giving it to her. I find out things like this every day and I am involved with her care. It's just very aggravating because we are trying to do the best for her.

Turquoise