Paula, so very sorry to hear of your nightmare. And I am so glad and grateful you are back, we need you and your voice in the world.

My mom was in a rehab facility after a bad fall and I have to agree, like you said, some of the staff working with her were earth angels, and others were useless, constantly on their cell phones, talking in another language while looking at the patients (who, even in their "altered state" or whatever you want to call it, knew full well they were being talked about)...but I know the place I got her into was the best in town and it could have been so much worse. It was actually a very good facility, and we all know no place is perfect.

What I learned was this, maybe this will help others. This is for those situations like you just went through, when you are temporarily not able to direct your own care, meds, etc.

1. First, if you can at all, have someone come in to see you daily, your Visitor, and not always at the same time for obvious reasons. Then, the staff member who you feel most comfortable with, if the Visitor doesn't see that person every day, because he/she comes at different times, can always call when that staffer is on duty, ask to speak with that staffer, and get details of how you are doing, how much you ate, how the meds are working, are you drinking enough fluids, etc.

2. Find out who the supervisor(s) are of the staff having direct contact with the PWP. Then have the Visitor mention their name in casual conversation with those staff, and if the supervisor happens to be on the floor when he/she is there, make sure staff sees your Visitor talking to them. I was truly surprised at the difference in attention my mom got whenever that supervisor was on duty: those lazy-$#! who previously were on their phones 24/7 were suddenly off the phone, running around reading charts (albeit upside down, one of them, that was fun to see), filling water pitchers, looking over their shoulders all the while...

3. The staff who are earth angels, let them know how much they are appreciated. I would tell them, gave them small gifts (out of sight of the lazy useless staffers, of course), even a $5 gift card to Starbucks made them smile, and then even gave them a break with my mom's care, I would feed her, take her to the bathroom, help with clothing, trim her nails, small things, but it made a difference. Whatever you can do to let them know you appreciate them will translate into better care for the PWP.

4. Be very involved about drugs. Hopefully your Visitor will also be your medical POA at least sometimes. He or she can ask questions about your care and make sure everything is being done that can and needs to be. I asked whether we could use less of a drug, or sometimes a completely different drug, and once, even refused to consent to the administration of a drug. I do think the tendency is to medicate in these facilities because they want everyone quiet and complacent, it's much easier to manage. And sometimes the patient is really having a hard time, and they have to make sure he/she is safe. I found the earth angels were very open to finding things besides drugs that would help my mom, like cutting her nails short so that she couldn't rip the skin off her arms, duct-taping her sleeves closed so she couldn't get naked in the dining room (really!), and that was so nice to have a partner in her care instead of feeling like I was fighting to get the attention she needed from the cell-phoners, as I called them.

5. I think this has been said before but get a medical POA and have that person know what you want, including what hospital you want to go to if you need to (they will send the patient to the closest one unless you direct otherwise). My mom hated the ambulance so I also advised the facility that unless it was a true emergency, to call me and I would take my mom anywhere they felt she needed to go in my car. Also, I learned too late that you can ask your regular doc to come see/visit you in the assisted living/rehab/nursing home. Not all docs will do this, but you can always ask.

6. Your medical POA needs to look at your file in the facility to make sure things are straight. I don't think most people think they can do this because staff will let you know they don't like it, but you have the right as medical POA to do it. If you can't find what you need in the file, ask staff to help. I would ask questions like "Where does it say Dr. X prescribed the atavan?" or "Is this the page where it's supposed to say mom goes to X hospital if she has an emergency?" I told the cell-phoners several things that were supposed to be noted in my mom's file only to later learn that they had not been. I had to go to the earth angel and have her document everything in the file the way my mom needed it to be.

I learned so much and I wasn't even the one in the facility, for Pete's sake. If you feel up to it, Paula, it could be so helpful if you wrote up a list of what you think would have made things better for you as a PWP in this situation and share it with everyone here. I'm praying for a complete and thorough recovery for you from your ordeal.

carey,
i hope your mother has pleasant dreams. It's where you go that is terrifying. Your father has family to help, it is more than a full time job.
God Bless them all.

I don't know if you have gone past the point of adding new material or not, but Paula's unedited, stream of consciousness commentary could powerfully make the point that she is still in there.

just want to include this statement as it just happened. i take high doses of sinemet but back off at night. So they bring two and they have to record that i rejected one. so the nurses complained - she wants them, she doesn't want them. 1 or 2? this was not doable.

today the head evening nurse told Dr. A about my flagrant fickleness of needing 2 on time all day and then actually rejecting 1 at night. so the head nurse asked me if the doctor had talked to me about my sinemet. i said no not a word why? she replied that sometimes i want 1 instead of 2 in the evening and can't make up my mind.He allegedly said to her - oh she can't do that here. i'talk to her.

but he never said a word to me when he stopped in. Knowing our situations, this is like a mental block. - she would only take 1 when 2 are ordered. what a kook! They complained.

Lurking thanks for the suggestions. i have family and friends helping but it's hard on them. we also [my brother] bought candies and set them out. I usually do get my meds now but have to check them or ring for them. mistakes but no denials. i need a POA - good idea. today i had a new renegade nurse. all the other nurses make me swallow in front of them. i would see this nurse in the hallway and she'd call out " your next dose is in your dresser waiting for you." Don't think she will be here long.

thank you rick, i wondered about where i was and will need a thorough med review. they are giving me potassium - the only supplement in the batch.

Paula - how positively maddening! It's hard when you are the only sane one in the bunch ..........

We've been lucky with my mom - she takes one pill for thyroid and that's it; I can't imagine how difficult it would be if we had to monitor a complicated pill schedule......

Maybe we could get someone to give a workshop for the staff at your facility on caring for the PD patient?

Paula,
What a pack of morons you're up against!
Doesn't the place you're in have a policy whereby PWP can self medicate with their anti parkinson meds?
Fair enough with analgesia they should watch you swallow etc but not something so basic as a tablet that allows you to move.
If they won't allow you to self medicate then can you get your family to (quietly) bring in Sinemet that you could take when they won't listen?
You need to be comfortable Paula or your recovery is in jeopardy esp when they expect you to get up and move.
The last thing you need right now is to go **** up!
Thinking of you,
Lee

All PWP and caregivers need to know about these problems with medications in hospitals and other health care facilities. And doctors and nurses need to be educated about special medication needs of PWP. If this nightmare can happen to someone who is knowledgeable and assertive as Paula , it can happen to anyone, and it probably frequently does .

Looking for some information for Paula, we did find some materials on the NPF web site, but they are scattered and hard to locate. And few people – especially few medical personnel seem to know about them. Here are some links :

Five frequently asked questions about medications (booklet)
http://www.parkinsons.northwestern.e...R-Summer07.pdf

Information for your Nurse and Doctor for Hospitalization (checklist from NPF)http://www.parkinson.org/NationalPar...e9d4835e23.pdf

What do caregivers need to know about hospital stays and complex medication regimens? video
http://www.parkinson.org/Parkinson-s...spx?VideoID=92

Poor Medication Management of Parkinson's Disease During Hospital Admissions: Patients and Families Can Improve Their Hospital-Based Management (NPF blog entry)
http://www.parkinson.org/Patients/Pa...-Disease-.aspx

Parkinsons UK has launched a national campaign -- “Get it on Time”.
See: http://www.parkinsons.org.uk/default.aspx?page=7655

They say,“We launched 'Get it on time' to ensure that the thousands of people with Parkinson's admitted into UK hospitals each year get their medication on time - every time.”
Maybe someone has first hand experience with this program? Couldn’t one of the U.S. orgs. Start something similar?

I just spoke to Bill Bell about Paula; he also mention the "Get it on Time" program in the UK.

Linda - is there anything we can do on the ground for her? I was thinking of someone intervening on her behalf?

Thanks!

lee it boggles the mind.....no prescription medicines allowed on person. i pay 70 dollars a month extra for brand name sinemet and they bring the generic. i have to send them back for the brand name,concerning amounts. if they would read the label it says take2 every two hours as needed.

the bigger problem is that thousands of baby boomers are going to be entering these care facilities with the same policy set up for patients to be battling for medication. often picked out of punch cards of generics by those not qualified to do so.

I'm with Rick.
Paula's unedited broadsides, stream of consciousness realism, fierce and honest spirit, combine to jolt the reader into realizing that little of what is being done for PWP actually reaches the front lines of the battle; the PD industry is one big placebo with a bit of tranquilizer mixed in. The $250 million spent yearly on PD research is distant from us and we can see no progress for the past half century. Perhaps the place to start would not be in a Pharma lab cooking up another slight variation of an agonist; or sociologists finding out that PWP tend to become socially isolated when they can scarcely walk or talk and the pain is intense - guess what? They don't get out so much. I am not sure of this statistic, but there are something like 10,000 research papers on PD every year, America and Europe combined.
Instead of starting with another 10,000 science projects (PD saliva - too much or too little?)
perhaps start with the patients enduring the callous ignorance that Paula has endured, and work back from there. Take care of our wounded here and now; start to base health care on what they need just to make it through the day; and possibly discoveries will come just from the fact that actual real-life PWP are the first line, instead of bringing up the rear, as they are now - mostly invisible in the parade. The industry that took over our illness scarcely takes our here-and-now needs into consideration; in fact excludes PWP from their process as much as possible, so we have to spend time educating the doctors and nurses who tell you that it is hospital regulations, that they bring you your pills three times a day, unless there is something good on TV in the employee's lunch room.
Who knows how many years it will be before some sort of cure is found? No way to guess. But meanwhile, there are thousands of PWP out there getting jerked around by a medical industry where those assigned to be care-givers to PWP do not even have 5 minutes to Google Parkinson`s to find out a few elementary indications that it is not the same as a car accident or tuberculosis.
Maybe most PD orgs should focus fiercely on local PWP, to the extent that hospitalization would automatically trigger visits to the hospital by Parkinson`s Patient activists, with a severe check-list of how the PWP is to be treated in medical and human terms, and the promise that there will be follow-up visits. Trust, but verify.
What Paula has just endured borders on a violation of basic human rights. It is Paula's expression of her experience that gets through to people. Her descriptions and passion resonate because she brings alive the details - the nurses chatting on cell-phones about what they bought at the shopping centre; having your drugs confiscated by people who seem to know or care nothing about the nature of the disease, & etc; most of us have these stories, but we go back to pushing for more research; Paula brings alive the question: just how are the patients being cared for? Here, now.