I have already contacted my state reps in Florida but some of you may be able to offer advice. My husband is on hospice in a dementia only facility. State popped in on Friday and is banning the use of all restraints including: lap belts on W/Cs, pommel cushions which prevent sliding forward, gerrichairs with attached trays, lap buddies and full bed rails. Until Fri. Hospice patients with a doctor's order co-signed by POA could be kept safe from falling. My husband has already had three falls as have other residents. Staff is adequate-just can't watch every resident every minute of the day. I need suggestions-please
This is another example of "Big Brother" knowing better what we need. The only way to get them to change is to get others to join you and create as much noise as you can - letters, interviews on TV, legislative hearings, etc. You might try a law suit if he has fallen several times, particularly if he is hurt, but I am not sure you can sue the government. Also, the lawyer might decide to go after the hospice facility, which is not what you want. Joang can probably give you more specific advise on how to influence the government (I was going to say "idiots in government", but maybe shouldn't) since she has had experience in this area.
Marsh I agree with your statement about "big brother". I even understand where the problems with the use of restraints come from. They were overused at one point in all kinds of cases (not just AD). If my husband was home, he would have a seatbelt on for his safety because all it takes is a second of not being there or looking away for him to slide or do something to injure himself. I would rather have him safe. We put toddles in cribs for the same reason.
Unfortunately, governments seem to do things in the black and white category and have a very hard time when it is shades of gray.
bluedaze, make your feelings known to the outside world - hopefully Joan can give you some concrete suggestions on who to call about it. The other thing is to ask if the rules have actually changed or has the interpretation of them changed. This may be they way to figure out if they can be seatbelted in as appropriate.
I am acquiring some great ideas that I will present to hospice if they ever return my calls. Please keep the ideas flowing. We need to advocate for all victems
I would send certified letters to the government board that changed the rules and to all your state and federal legislators. Making them sign for something seems to get a little more attention. Send to the state office, not Washington DC - seems to get the attention of the federal legislators more.
I think that all those restraints should be gently packed up, shipped to Washington or State Capitols, and used to restrain most of the bureaucrats. Maybe if they were restrained to their office, some good laws might be passed...I personally am glad that the restraints are being banned......Duct tape is so much cheaper, and works so much better....the only drawback is ripping it off someone's mouth...sometimes it can be painful, and the glue is so hard to take off...Does Medicare cover duct tape??? I am sorry if I offended anyone, but sometimes I wonder where common sense has gone...I cannot believe how some government agencies have all these regulations and rules that adversely affect so many people. I know that the intent is probably good, but they fail to make exceptions for those who really need some of the restraints. I guess they prefer to have patients fall out of bed, wheelchairs, etc than to allow them some form of mobility. Or perhaps, they will now require patients in wheelchairs to wear protective gear, armpads, helmets, and knee pads....
BlueDaze, I live in Florida also. I hope my wife never needs restraints. I don't know if I could handle seeing her in them or not. I also realize that it may come to that someday, but it it does I want to be able to do what ever is in her best interest. I would be willing to take an active part in having this reversed. If there is anything I can do I would be very willing to do it. Please let me know how I can help.
Do you know the name of the department that issued this order and/or the name of the head of that department?
A big problem I can see with this is that you will see more chemical restraints used in Nursing Homes if they ban the lap belts and such. Maybe the government should outlaw the seat belts in our cars, we are required to use them for safety and will get a ticket if we do not.
My offer of help is being ignored by hospice so I hope they can iron things out. My main problem is with the lap belts. With them in place my husband could safely peddle himself where he wanted to go. I don't consider them a restraint at all. Would you put a toddler in a regular chair and not expect him to fall? Sorry some folks took the restraint issue the wrong way. In my husband's facility residents are never "tied down and left to rot". It is my job to see that never happens.
bluedaze I agree with you completely and hope you find a doable solution. When my dh was sent to the rehab hospital from the hospital, he could not walk. It took 2 aides to help him from wheelchair to bed and back and toilet and back. The first time they took him by wheelchair to the therapy room they did not use the velcro lapbelt. The aide left his side to do something and he got up and ran out the exit door with 4 aides and the Therapist after him. One of them showed us the bruised on her arm from finally restraining him. This incident was all "the talk around the hospital" while he was there and thereafter the lapbelt was secured. Thankfully he did not hurt himself. Goes to show you, if they want to do something bad enough, they can sometimes do it.
Here is an update. If the state and ALF's cannot come to some sort of agreement about restraints the residents will have to be transferred to NHs. That is a horrible thing to do to very confused souls who know their care givers and whose care givers know them. I am just about in tears.
i hope enough noise is being made that reasonable agreements can be made for the safety of our spouses in NH and ALF- when they are getting lawsuits due to injuries we can expect a class action lawsuit by involved parties. its the only way to get burocrats to listen. ie-remember the classaction against tobacco and they won. takes all of them collectively to pull some big strings for anyone to listen. how sad. bluedaze i hope you find a creative solution. divvi
bluedaze, take that energy that is going into tears and start writing. How can legislature that does not live with the situation even begin to make laws, rules and regulations about it. That goes for medical people too that don't live with it. If a lap restraint is justified/needed, it should be there. This is about our loved ones' safety and the safety of those around them.
I went through a similar thing the last time my husband was in the hospital. They had him on a monitor and I questioned it. The rule/law is that they have to be off restraints for 24 hours before they can be released from the hospital. As he was still mobile at the time, I had visions of him getting up and wandering among the medical equipment in the hall or getting on the elevator at the end of the hall before anyone realized he was gone. As he also had a catheter and an IV in him at the time, I was doubly worried.
Briegull is right. BUT I'd call the local TV station's consumer reporter instead. And have them bring a camera with them to see what the lap belt, for example, or the bed rails, really look like. Have someone explain why you don't want someone who is at risk of falling get out of bed without a nurse with them. Explain that with the lap belt they have some mobility. Without it they need to be drugged unconscious to keep them safe.
Pictures are worth a thousand words.
I was put behind bed rails a couple of times in hospitals when they didn't want me leaving the bed without someone with me. It isn't just used for dementia patients.
well i can promise you fedex him here he will have rails on his bed::)) right next to my DH's ...i have them on DH hospital bed and i will buy the bed and rails if they try to take them.. haha.. more than one person i know has said i should open my home to taking in medicare patients and call it a 'retreat' ! (G) divvi
I agree that the use of restraints can prevent some awful things. My husband, who was wandering at the time walked face first into a patient lift. I would much rather see him lap belted into his wheelchair than lose an eye.
Oh Nora, I am sorry if you took my comment to mean that I did not agree with you. Sorry. I do agree that they should not outlaw restraints, lap belts was my way of saying that. I always come across different to people than what I mean. Sorry sorry sorry
Re: Briegull's suggestion about contacting the press:
Try Hillary Copsey of TCPalm.com - she wrote an article about me, Alzheimer's Disease, and the website. Try Judie Rappaport of TCPalm.com - she is the elder affairs writer. Try Jim Sackett of WPTV - He is active in Alzheimer's issues.
When my father was in the hospital a while back they needed to use restraints to keep him in bed because he was not thinking clear and would have caused injury to himself. I saw him trying to pull tubes out etc... The restraints in that case were for his protection. When he was in rehab they used restraints so he could use a wheelchair and in that case the restraints gave him freedom of movement and with out them he would have had to stay in bed all the time.
I can see where they might be used to make someone's job easier at times when they are not really needed and sometimes for control only. And I can see where they might be over used too.
What I don't think is that simply holding a political office gives anyone the knowledge to make the call better than the attending staff or the doctor. Will they sometimes abuse it, sure? That is when we need to step in and say something. That is when we need to contact the administrators and anyone else that can assist in putting a stop to the abuse. But Politian’s should not be taking away the tools that help our loved ones just because they don't personally think they aren't nice or some such thing.
I hope that Kathryn never has to have restraints but if they are in her best interest then I want them available when she needs them. But they all will know I will be watching.
several times we have had to use restraints with DH while in the ER or hospital - all with UTI. which as we know makes them quite unruly and aggressive. i dont think we could have gotten him cathed or IV's hooked up without a measure of sedatives (ativan) as a chemical restraint during any of those times. and while in the hospital hand restraints as he pulled out the IV with antibiotics and hurt himself trying to pull out the catheter. these dementia folks do not understand that what we do for them is for their good and so we must have a way to restrict their self- harm due to no reasoning abilities. my DH was falling out of bed at nite, thus we got the rails for the hospice bed. broken hip or rails? its makes no sense. divvi
I am not familiar with your state regulations, but according to the Federal Regs, restraints have not been "outlawed." A process is in place that facilities are required to follow. Assessments, past history, diagnosis, MD orders, care plan meetings, family notification, a restraint reduction trial, and the list is quite involved, not the least of which is documentation. If a facility has not met ALL the requirements, some may reach the conclusion and pass it along to the families, "The State came in and said we cannot use restraints anymore." This is an easier way to deal with the situation, rather than trying to fix the problem. On the other hand, should a patient fall and suffer an injury that is reportable to the state's regional office, they can also receive a citation for failing to protect the patient. As you can see, it becomes quite frustrating for facilities. The nursing home industry is the second most federally regulated government program in the United States, second only to the Nuclear Energy Dept. (And it may be first by now) It's difficult to understand, interpret and apply the more than 500 Federal Regulations, and each state also has it's own requirements. Yes, I am a former State Surveyor for Long Term Care facilities. Currently I am an independent LTC Consultant for nursing homes. I just hope I have, and will continue to make a difference in the care that all LTC residents receive.
Jan-thank you for coming along. My husband is in a dementia only ALF. With hospice he can stay there 'til the end. No one there is restrained for the convenience of the staff. As an RN I keep a watchful eye on everything going on. Please keep dropping in-I need your expertise.
Yes, Bluedaze, ALFs are a totally different entity. And as you already know, with hospice, it too is different. It is so hard to know where to place your loved one. My DH is in ALF also. Spends most of his time watching TV. I expect he will have to go to LTC at some point in time. Good chatting with you.
bluedaze, I wish I had helpful suggestions, but I don't other than to say keep fighting. The notion of banning some restraint of dementia patients is irresponsible. I hope you have luck in getting the policy changed.