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My mother has Parkinson’s disease and recently she could not get up from the bedside commode.


She has been declining for some time now, being very slow and rigid movements. But never has it taken her an hour to get up off the commode.


So of course I was very concerned. After she was finally able to reach her bed and rest I called her neurologist and he said to get her to the emergency room.


I called an ambulance and followed in my car. They kept her for several days in the hospital doing all sorts of tests, a little bit of physical therapy towards the end of her stay. No UTI, no stroke, no heart issues, etc. They tested her cognitive function. That was fine as well.


They recommended treatment in a skilled nursing facility to gain strength to which I totally agreed with. She has been there for a few weeks.


It’s an older nursing home but the skilled nursing rehab section is very good. Some people on staff leave a lot to be desired. I was hoping for the best but the nursing homes in our area are not the best facilities.


I completely realize that they are understaffed, have a very demanding job, underpaid, etc, but I do expect them to do a reasonable job in caring for the residents. I do appreciate everything they do well. The social worker is wonderful to work with. I recently had an update from the social worker about her progress. She is willingly doing all of her physical therapy. She has been tested for cognitive skills also. The social worker says her cognitive skills are great for someone her age. (93)


The social worker says she is making progress with physical therapy in all areas except for balance which is common for Parkinson’s patients to have issues with which is why she uses a walker. She is now needing more help with dressing, toileting, getting in and out of bed and so forth.


My concerns are my mom only takes very few meds. She has always been and still is extremely accurate and aware of the dosages of her medication.


She has a system where she places the correct pills out at the appropriate times of the day and in the home they were giving meds precisely according to her doctor’s prescribed amount.


The major complaint I have is mom told me last night they gave her two of her Sinemet, Parkinson’s meds at one time and she immediately pointed out that she takes one and the next dose is four hours later.


She said they told her to take both pills to which she questioned why, the response the woman gave was so she wouldn’t have to come back again later.


So mom asked if it would hurt her to take two pills at a time and she said no. Mom took it as she was told but it bothered her.


Needless to say, I am not happy about that answer at all. That is her job to give meds as they are prescribed. She wasn’t on duty when I was there so I didn’t address it at that time. I asked mom if she saw her name tag and she said no. I wish I had her name.


When I got home I called my local pharmacy and spoke to the pharmacist and she said if it happened one time that mom should be fine but she should have given it as prescribed and that she wouldn’t want it to happen again and also asked me to report it to the facility.


My friend who is a nurse told me awhile back that the staff takes liberties with meds that they shouldn’t and it always concerned her when her dad was in a home.


I was hoping we wouldn’t run into these issues. I felt terrible for mom because I told her when she entered the home that they would take good care of her. I visit regularly to check on her.


The other complaints I suppose are common. They don’t arrive to her room promptly to take her to the bathroom and they leave soiled diapers on for longer than they should. They use diapers overnight.


They also wouldn't give her a fresh cup to rinse her mouth after brushing teeth and she shares a bathroom with her roommate, plus the room next door to her. She didn’t know if anyone had used it. That isn’t sanitary.


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Hi.... I didn’t read the entire message... but, enough....when it comes to addressing nursing home care, I will share my experience.
we cannot escape the nightmare of having a loved one in a nursing home. Sooooo many things done poorly and fear that the staff will take it out on your loved one.
i wrote a great letter to the Dept of Health in charge of nursing homes. I had legitimate complaints... I wrote everything down and spared them nothing. I told nobody I was doing this and really didn’t care they would find out it was me. What happened was a very unexpected visit from a person who inspects nursing homes but this time there was no notice to staff. As far as retribution... I met with the CEO of this nursing home and believe me, if I heard one complaint from my mom that she wasn’t cleaned up when needed and not waiting an hour. The nursing home was going to limit the # of diapers a day and when I heard this... I said over my dead body. My mom was to have as many as she need and I wanted a case in her bedroom so they would be available.
Tell none of your complaints but write a letter to dept of health and human service and let them know everything and a lawyer if needed would continue with all complaints.
my mom was treated much better and I was there a lot to be sure...it is their job and responsibility to care for patients... a lot of time is wasted with lazy underpaid people... that’s the big problem so complain over their heads... it is a necessity....
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NeedHelpWithMom Jul 23, 2019
Good advice, thanks.
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Get one of those small long time tape recorders and a camera.
Make sure they're being seen by staff. That will get their attention
and straighten things out shortly.

Nov '12 I had Chron's and ruptured my colon, nearly died. In a coma 21 days.
Hosp another 2 weeks, then 9 weeks in a N/H. First month I didn't care if I lived or died and would have been a whole lot easier to die. They'd left my belly open to rinse me out 3-4 times a day. That had to heal from the inside out. Finally I realized it wasn't going to get better until I wanted it to. I couldn't even stand up without help. The PT worked with me til I could walk well enough again to come home with home care an hour a day.

The last place you want to go is a lousy N/H! My two main complaints were the air mattress's would never stay up and leaked off. I'd roll from it down between the bed and side rail where i couldn't reach the pull cord.

They didn't care if or when pill time came. I'd pull the cord and wait, maybe they'd come in maybe not at all. No way to repeat the call. They'd come sneaking in real quietly with soft rubber soles and if my eye's were closed, they'd turn the light off and leave without checking with me. I had to be constantly watching to catch them coming in, if not no service regardless of what I needed.
Complaints had no effect on anyone.

I got thru it and home, had around 25 more surgeries since. Still doing ok and living alone at 75.

Those recorders and a camera WILL get their attention fast. Whether you use them or not. I'd take a picture of all staff and get their names so your Mom can ID them when something isn't right.

Good luck
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Justme44 Jul 22, 2019
Glad your home now! Sounds like horrible place. Theses places need better regulations and more extensive checks on emplyees. Its ridiculous how understaffed they are for the amount of patients. Real change is needed or only going to get worse.
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overworked, underpaid but UNDERSTAFFED is the big issue. Every nursing home in every state is crying for CNA and Nurses for all shifts. Its a disaster. Your mom shouldn't be left on a toilet. The Nurses seem to finish earlier and could do things like stay in the bathroom with her, while the CNA is still running around changing full beds and briefs. No one want a fall (4 letter f word). A fall can be the be the beginning of the end. Some residents never fully recover, and the ones that do can have a rough road. And on a side note, I have the utmost respect for the family member, usually a daughter, who has a full time job, husband, grandkids, and is at the Nursing Home almost every day getting laundry, dropping off laundry,seeing if mom/dad has favorite tissue brand, snack etc. And this can go on for years!! God bless you all. It doesn't go unnoticed by Nursing Staff like me. I salute you!!
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NeedHelpWithMom Jul 20, 2019
Thanks Heidi,

I do mom’s laundry. They have large signs saying that the family will do laundry and they still took some of her clothes to wash and lost them. I went to lost and found and was able to retrieve items for her. I feel sorry for residents who don’t have family to speak up for them.
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Google how to report a complaint for your state - usually under the licensing entity, such as dept of health. In New Jersey - https://www.state.nj.us/health/healthfacilities/file_complaint.shtml
Do not make excuses for the facilities’s operations - they mostly stem from organizational choices.
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The medication issue is a HUGE problem, if they are doing that to your mom you can be sure they are doing it to others, and with many medications the doubling up or mistiming of doses may not be so benign. There are no acceptable shortcuts in medication management, you need to make a formal complaint IN WRITING, and follow this all the way up the chain of command.
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NeedHelpWithMom Jul 18, 2019
Thanks cwille, actually your answer matches what my local pharmacist said. She was disturbed that the incident occurred and said what you did. That it happens more than we know about. So, according to my pharmacist, you are right on track.
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Every Medicaid approved NH must post the complaint procedure in a place where all can see, usually the patient lobby area.

Ask to see the centers formal complaint workflow if it is not there.

Usually the person filing the complaint must follow a “chain of command” that begins with the Director of Nursing. If not resolved after that step has been completed then it progresses to someone higher up.
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Contact your Local Ombudsman Program for assistance
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You are so right about staffing and care in nursing homes. We all need to clamor (to state and federal representatives) to do something about mandated staffing levels. Even the best long-term care homes don't have the staff they need. Imagine if your mom had dementia and couldn't communicate these problems to you!

Errors with meds is very serious. You should report this not only to the DoN in the facility but to your state Dept. of Health and county Ombudsman. They may try to say your mom "at her age" is probably unable to remember correctly, which you can rebut. Homes can lose licenses for medication errors, to say nothing of what might happen to the resident being over- or under-medicated. The facility has to keep a log of when meds are administered, and falsifying this is a huge no-no. Hard to prove but you should demand to see your mom's records, which you have a right to do.

And sharing a cup?? Also report the soiled diapers. Report all concerns to official bodies, not just to the facility, because these must end. While you're with your mom have the DoN come in to check your mom's skin for signs of beginning bedsores.

Thank heavens your mom has you. Good luck.
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thepianist Jul 21, 2019
PS: I agree with rocketjob below that ideally we don't want to go over the heads of those on the ground level. But in this case I think you do need to go right to the DoN, the State Health Dept., etc. because you need to ensure that these errors stop IMMEDIATELY. You are right to compliment and report up the ladder good care and good aides, this goes a long way. Good aides will know that you aren't out to 'get' them. THEY know who the slackers are. I was a CNA and saw firsthand how some people cut corners, other never did. The state of staffing in long-term care homes is almost criminally inadequate. Just another national disgrace we aren't dealing with effectively.

Keep up the good fight!
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As the caregiver for a Parkinson’s patient, their medicine regimen is crucial. It must be given On Time, Every Time. Patients at home set alarm clocks so they take their medicine exactly on time. Doubling your Mother’s dose is dangerous, and also that means that 4 hours later, when there is none in her system, she pays a penalty again - so she gets a double whammy! That nurse should be ashamed of herself for being so lazy. Your Mother has the right to refuse the second pill until the correct time. She would probably have to tell them when it was time, though. I’m sorry she went through that. A double dose and then a missing dose could have put someone in the ER that was further along in the disease.
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NeedHelpWithMom Jul 23, 2019
Becky,

Believe me when I say that I was upset. Very upsetting to have her double dosed.
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Bring your concerns to the Ombudsman of the NH.
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