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How to Find the Right Nursing Home And How to Get Good Care There

An Interview With Peggy Tener, B.S.W., N.H.A. and William G. Hammond, Attorney at Law
Author of The Alzheimer's Legal Survival Guide and The Alzheimer's Resource Kit"

BILL: This is Bill Hammond. I'm the president and founder of The Elder & Disability Law Firm in Overland Park, Kansas, and I'm here today with Peggy Tener. Peggy, we're going to talk about how to find the right nursing home and how to get good care there. Before we begin, Peggy, I'd like to have you give us a little bit of your background.

PEGGY: Okay. Well, I'm a Social Worker, and I'm a licensed Nursing Home Administrator, and I've worked for the past twelve years in the areas of acute care and primarily, long-term care, including adult day care and nursing home care.

BILL: Okay. Peggy, let's say that I've just been told that a loved one of mine needs nursing home care. Where should I begin to look? How do I even start?

PEGGY: Well, I think that the first thing is, if you're in a crisis situation when this happens, I think the best thing to do first is to rely on the professionals who are available to you. For example, discharge planners, Social Workers in the hospitals. They are there to help guide you in making these kinds of plans and arrangements. If you are not in a crisis situation, and you have some time, I would first start off with deciding what is important to you and your loved one. I would look at - is the geographic location the most important? Is there an importance in the type of unit that your loved one needs to be on; for example, an Alzheimer's unit? I would start there, deciding what you want. Then I would gather information from the resources that are available in the community. For example, through the Area Agency on Aging, the Alzheimer's Association, and other organizations such as that who would have listings of nursing homes.

BILL: Okay. If I can go back a second, Peggy, to the crisis situation, I know the folks that you mentioned - the Social Workers, discharge planners, and folks like that. I know they must be just incredibly busy. What can you reasonably expect them to do? I know they're very knowledgeable. How much time will they have, and how can you help them help you find the right place?

PEGGY: Right. You're absolutely right. Discharge planners in hospitals, especially in the way today's health care is set up, are very busy, because length of stay is so short in a hospital now. I think it is reasonable to expect them to discuss with you the options for care, primarily in the geographic area that you're looking at, and to guide you as to which of those facilities might best meet your needs. They will not go out with you and look for a nursing home, but they will guide you and even call and set up tours.

BILL: Will they tend to have to have things like listings of various facilities?

PEGGY: Yes. They will have lists, and many times, will highlight for you facilities that they have worked with and have had good contact with.

BILL: And by "good contact" you mean that they typically have had a pretty good relationship or they've had positive feedback?

PEGGY: Both. They've had positive feedback, and also have had a smooth working relationship with transfers to and from the facility.

BILL: Okay. Let's say, then, that you've got a list, and you've got maybe three or four different places on it, and it's kind of a crisis situation, once again. You don't have a lot of time. You've got this list in front of you and it's got the name and phone number of facilities that you probably know little or nothing about. What do you do?

PEGGY: I would first call and speak with the Admission Director to find out, first of all, if they have bed availability, if they have a place for your loved one. More than likely, before they answer that question, they will call themselves the nurses on the nursing station, and probably talk with the Social Worker to get information, to make sure they can meet your loved one's needs. Then they will tell you if they have availability. At that time, those facilities that you have talked to, you'll want to go tour that facility, and initially I would recommend you tour during a weekday, while the administrative staff is there, because they're the ones that can answer a lot of your questions. I also do recommend, if time permits, to go for a second tour during an off time, either an evening or a weekend, just to walk around and see how things seem to be going. Do they look smooth? Do the residents look like their needs are being met? Are they clean and well kept? Are the staff getting along and paying attention to the needs of the residents? That kind of thing - just more of an observation, because it is telling of what's going on while the boss is not there.

BILL: So you're saying that you would go out and take a business hours tour and actually have facility folks show you around and give you the overall tour, but with the understanding that there's always PR involved. So what you're saying is go back and go to the same facility - obviously the ones that you are considering - but walk in unannounced. Is that what you're saying?

PEGGY: Yes, I would.

BILL: What's a good time to do that?

PEGGY: I would say that dinner time is a good time. I think meal times tend to be one of the more hectic times at a nursing facility, so if you go in and things seem to be running relatively smoothly and people seem to be being cared for properly, at that time, I would think it would be safe to assume that at most times, people are getting their needs met.

BILL: Now, Peggy, I know that when people are dating, sometimes they can't see the flaws in each other, and then all of the sudden, you make a decision, and you start to see some things that maybe you didn't see before. Let's say that we have a situation where you've selected the nursing home, you like it. It's a nice facility, it's clean, it's odor-free, it's all those things that you talked about, and yet, inevitably, some problems might come to the fore. How do you, first of all, try to head those off to begin with. Let's start there. What do you do first to make sure your loved one gets good care?

PEGGY: I think first of all, assume when you go in that the goal of the facility is to provide great care, and that you are going to work as their partner to help them do that. So I think the first thing is to realize that they don't know your loved one. They don't know their likes and dislikes, they don't know their typical day - how they do things, and most facilities want to do a good job and want to meet your loved ones' individual preferences. I think the first thing is to get to know the staff and educate them about your loved one. Let them know what your mom likes to be called. Let them know what kind of food she likes and dislikes. What is her typical day like? If your mother, for the past forty years, has never gotten up before 10:00, they'll understand that when they go in to wake her up at 6:30, why she is not happy about it.

BILL: And in your example, is it okay for my mother to sleep in?

PEGGY: Absolutely! There is no reason, as a matter of fact, it's a goal of long-term care, in most states, to have individualized care, and to try to make a facility as home-like as possible. There are some things, obviously, you are working with a system, and to make things go smoothly in providing care for let's say, 120 people, you obviously have to have some systems in place. So for example, there might be some things with bathing days, where you get two full baths a week. However, if your mother has been an insomniac and has taken her bath at 2:00 in the morning her whole life, there really is no reason why she shouldn't be able to have her bath in the middle of the night if that's been her routine. And it will take some adjustment for the facility to adjust to that, but there's really no reason why they can't.

BILL: And you said to be sure and talk to the people. Who exactly should I be talking to? When I go to the facility, there are so many people. I don't know who to deal with.

PEGGY: I think you will get to know the administrative staff through the admission process. Definitely, you will get to know the Social Worker and Admission Coordinator. Sometimes, that's the same person. Sometimes there's two different people. You will probably also meet the Director of Nursing, and probably the Administrator through that process. When I'm talking about getting with staff and letting them know about your mom's specific preferences, I mean those people as well as the Charge Nurses, who are in charge of your mom's care during the day, evening, and night shifts. Get to know the Certified Nursing Assistants who are there five days a week during the day shift. Get to know those individuals who are spending the most time with your mom.

BILL: It seems to me that if we have gone through that process - I've taken the steps that you said - I've informed them of what Mom was like, and what-not. Is there some kind of a formal process that is supposed to put this all into play?

PEGGY: Absolutely. And that is through what is called "Care Planning." In the long-term care industry, anywhere you go, a document called a "Care Plan" is what drives the whole process of caring for your loved one. This is where a facility states what they feel your mother's needs are, what their goal is in meeting those needs, and then how they're going to meet them. The Care Plan is done initially upon admission, and then it's revised or reviewed and revised every 90 days, unless there's a change in your mom's condition, and then it's again reviewed then. But on a regular basis, assuming there's no acute incident with her health care or anything else, it would be every 90 days. At that time, the staff is required to invite the resident and/or their family members or their next of kin to participate in the care planning.

BILL: Is it important for me to be there, then, as a family member?

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PEGGY: I think it's vital, because I think this is the time when you can sit with all the staff members that are involved in overseeing your mom's care. By staff members, I mean dietary, therapy, nursing, social service, activity. You can talk about all aspects of your mom's care, not just her nursing care. You can talk about any concerns that you have. You can also help guide them in deciding what interventions might work to help solve a problem, if a problem can be solved.

BILL: Okay. Let's say that I've gone through this process, and I've given them the information and by the way - should I write it down? Is that helpful?

PEGGY: I would keep notes of a Care Plan meeting, as to the things that were discussed, and solutions that you came up with.

BILL: Okay. Let's say I've gone through and done all that, and for some reason, it doesn't seem to be working out. Who do I talk to? Where do I go?

PEGGY: I think first, I would go to the department head of whatever department it is you're dealing with. If it's an issue with food and the dietary, I would go to the dietitian or the dietary manager. I would first talk to them. If that does not work, I would then follow the formal grievance process that is in place and that is explained to you upon admission. It is a required element of the admission process that the grievance procedure be explained to you upon admission so that you know, from day one, how you would go about letting the staff know of problems, and how you'd go about getting them solved.

BILL: Okay. I'm sure that may vary from facility to facility, exactly how they do it, but can you give me an idea of what a typical grievance process might be?

PEGGY: It would probably be involved with a meeting, initially, with the Social Worker, where they would document your grievance. I, though, would recommend putting it writing, as well as meeting with them in person. Then they have a set amount of time for them to investigate your grievance and to get back to you as to what they can do to solve the problem. If that is not satisfactory, you can go to the Administrator, or even if this is a facility with a large company overseeing it, you can go to a regional director. If that does not seem to work, I would recommend then you contact the Division of Aging in Missouri, or the Department on Aging in Kansas, and speak with them about your concerns. There are different ways to do it. The easiest way is usually to call. There's a 1-800 number in each state to call and to list a complaint regarding a facility.

BILL: And then what happens at that point? Does the state actually come in and review the complaint?

PEGGY: Yes, they do. They are required to come in and review the complaint. The timeliness of them going in depends on the type of complaint. If this is a complaint where someone is in immediate direct danger, or immediate neglect, then they go in right away, and they do follow up with you in writing as to the outcome of their investigation. They will not be specific in that follow up, but they will let you know if your complaint was founded or not.

BILL: And would this be through the Ombudsman Program or is that a different deal?

PEGGY: That's a different deal. The Ombudsman Program - there is actually an Ombudsman who can act as a liaison for you between the facility and you in working out an issue.

BILL: Have you found that to be helpful in your experience?

PEGGY: Yes. I have in Missouri, primarily because there is one Ombudsman to work the entire Kansas City area, and she's a very dedicated person. So it has been successful. It's one of those things where the program is as good as the person doing it. But yes, she is very helpful. However, she is one person, so many times, going through the state may be your best option.

BILL: Okay, good. We spent quite a bit of time on the crisis situation, and you gave us some good advice there. Talk a little bit more about a situation where perhaps we have a progressive disease or something, and we know that nursing home placement is going to be likely, but we've got say, 6 months to look. And I'm assuming that everything else you talked about regarding the care still all remains the same, once the person is placed.

PEGGY: Absolutely.

BILL: So how do find a place when we've got several months to look?

PEGGY: Well, it's kind of the ideal situation where you, at that time, have the time to really do some investigation, and this would be things, for example, like I said, getting lists from multiple places like the Area Agency on Aging, the Alzheimer's Association, and many other special service agencies. You then can be collecting packets of information from the facilities before you decide who you will go tour. At that time, you would tour the facilities, and then also, I would recommend, if your loved one is able, that they go in and spend a little time there. For example, maybe go in and have lunch or participate in an activity and see how they seem to like it. That's not always possible, and it's sometimes not always the best option because of the trauma of changing your living situation and having to go into a care facility. But if it is possible, and they are part of the decision-making process, I would recommend that.

BILL: Peggy, you hit on something that I frequently hear, and that is complaints about the food - that it's bland. Tell us why that's often the case, and tell us if there's anything that a resident can do about that.

PEGGY: Yes. Sure. I think the thing to remember is that meals are being cooked for sometimes 120 to 200 people, all with very different dietary needs, and different obvious preferences. Most meals that are made in facilities are made low sodium and they are, I would be safe to say, sometimes bland. I think the thing to remember are two things: number one is that as we get older, our taste buds lose their ability, so many times, older people tend to season their food quite a bit more than they had when they were younger. So that's one thing to remember, is that it takes more seasoning for them to taste it now. I think the other thing to remember is that if you don't have any dietary restrictions, you can have your own condiments at a facility. For example, I used to work in some facilities down in Louisiana where half the people would bring their own bottle of hot sauce to the dining room, which is not unusual down in Louisiana. But I think that you can, as long as your meeting your dietary restrictions that the doctor has put in place for you.

BILL: So it's okay to have, literally, a condiment basket, that you take out and season however you want, as long as the doctor doesn't have any problem with it.

PEGGY: Absolutely, and many facilities will even provide those for you. Some facilities will put condiments on each person's tray that will meet their dietary needs, so that, for example, there's not a shaker of salt sitting on a table where someone who's on a limited salt diet would use it.

BILL: Right. But again, I think what you're telling me is that this is a case where if you don't feel like your needs are being met individually, you have options through the care planning process, and even speaking with the physicians.

PEGGY: Absolutely, and the thing to remember, too, is that the biggest complaint is usually about texture of food. It's too soft, and that is one thing that can be dealt with at the facility level, because the food should not be overcooked.

BILL: Okay. What if I have someone who's frequently losing laundry, and I think that's the other major complaint that I hear. Number one, the food is bland, and number two, my stuff keeps getting lost. How do we fix that?

PEGGY: Right. Well, I think there's a couple of preventative things you can do first. Number one is that ever item, no matter what size it is, that you take into a facility, mark it with a permanent laundry marker. That is usually the biggest thing that happens, especially when someone is in a facility around a holiday or birthday time, is they will get gifts without their being marked. And again, if you think about every resident - 120 people, all with 50 items of clothing, which includes socks and underwear, that's an awful lot of laundry to go through a system in a day, or in a week, and the best way to make sure your clothes remain your clothes is to have them clearly marked with your name. If you have a common last name, put a first initial. I think the second thing is that, if family wants to, they can do the resident's laundry. It doesn't have to be done at the facility. So if the family wants to and has the ability, they can do the laundry. You just need to make sure you post a sign wherever the dirty clothes are put, usually in a closet in a hamper, that says, "Family will do laundry."

BILL: Peggy, what if we have a special situation. Let's say that we have, and I'm shifting gears here, let's say that we've got someone with a progressive disease - Parkinson's, Alzheimer's, something like that - let's say, Alzheimer's because we see a lot of that in our practice. I know that all the things that we have talked about apply. Are there some special things in addition that folks with a loved one who's suffering from Alzheimer's should be looking at in trying to find the right facility?

PEGGY: Absolutely. I think, first of all, they need to make sure that what their loved one has is Alzheimer's. If they haven't been through a formal diagnostic process, I would recommend doing that first, because it's vital to not assume that because Mom is forgetful or seems to be acting a little strange, that it's just Alzheimer's. There can be a number of other things going on that can be treated. So that's first. Second is, in going through that process, working with the doctor and talking about if he feels a special care unit is required, and would be beneficial. When I say a special care unit, I'd like to make sure that people who are looking for a nursing home know what really makes a special care unit. Many facilities have put doorways at the end of the hall that are locked and call it an Alzheimer's special care unit, and it's not. It's a secured unit, which is beneficial to people who may wander or leave the building, but it's not an Alzheimer's special care unit. What you want to look for is a couple of things. Number one - have they taken advantage of the education that's out there about environmental factors for Alzheimer's? Colors that they seem to respond to better. Pattern of paint on the wall, because when someone has Alzheimer's, their perception is off, and many time, they can't tell where a doorway ends and where the wall begins. So a facility might do things like paint the trim around a door a darker color than the walls so they can see. I think the second thing is that they have staff on the unit who have had special training in how to work with people with Alzheimer's, and that they have a specialized activity program going on that meets the needs of people with Alzheimer's. What I am looking for are things like very short intervals of different activities with breaks in between. Do they meet the areas of getting physical exercise, enhancing motor skills? Those are the things that are lost when you have Alzheimer's because they quit using them. Are they doing activities that are adult and age specific? We're not doing childish things. Those are the kind of things you want to look at. Are you meeting the needs of people with Alzheimer's who, for example, won't sit down? There are things you can do for people who wander all the time. For example, I had many clients who would never sit down to eat, so what I did was have the dietary department prepare meals that could be eaten while walking - finger foods, that kind of thing. I think the main philosophy you want to look at on an Alzheimer's unit is are they able to adapt their system to meet everybody's needs? Or the reverse of that, which I find very frustrating, is are they trying to force people with Alzheimer's to try to behave a certain way that fits into their system? If that's the case, then they're really not doing a good job.

BILL: Okay, thanks, Peggy. One last question, and then we'll kind of wrap up here. We've gone through this process, we've talked about how to find the right facility. We've talked about how to get good care there. We've talked about dietary issues and laundry and all those types of things. The thing that I see in my practice probably more often than anything else, as an elder law attorney, and I try to counsel people on this, but I'm not sure exactly how to do it. How do you help people deal with the incredible grief and guilt that they feel at this time?

PEGGY: Gosh, that is so hard to do, and many times, unfortunately, there's not a whole lot you can do other than just support them as they go through it. It's a natural thing for them to go through. I know we have worked with families where they have promised Mom and Dad they would never put them in a nursing home, and here they are faced with that, or a spouse. It's heartbreaking to sit with families and their loved one and help them do this. But I think the thing that you need to remember in working with them is to support that desire for Mom, Dad, their husband, their wife, or whoever it is, that they first of all, get the best care they need. And many times, if they need a high level of care, being at home is not getting the best care they need. I think then, also, give them permission to do what is required, and many times that's really all that's needed, is to say, "It's okay to do this because..." and lay out the facts. Mom can't get out of bed by herself any more. You have to work full time. You don't have the ability to private pay for someone to be in the home 24 hours a day. It's really just not feasible, but you can find a good place that provides good care that you're secure with, and know that Mom's being taken care of, I'm not making myself sick, and neglecting my family, which many times we see. Maybe a daughter, who is married with children at home, who works full time, and where Mom now needs 24 hour care, and she's trying to do it all and it's not working. Nobody is getting what they need then. Just let them know that you're going to be able to find a way to meet everybody's needs and to do it in a good way.

BILL: Sometimes, of course, you know, professional counseling is called for.

PEGGY: Absolutely. If going through the grief process really is not happening, or it's taking a long time, or they just can't get out of the guilt associated with it, I do recommend that they go see a professional to work through these issues so that they can feel secure and because the other thing to remember is that as involved family members, my personal feeling is that we are obligated to see that our family members are cared for.

BILL: Great, Peggy. Thank you. I appreciate it. I'm going to stop right there. Do you have any closing comments for us?

PEGGY: No. I think just the one thing is to trust your gut instinct. If you feel something is going wrong, it probably is, even though a facility or other people might be telling you, "Oh, no. This is the way we do it." If you feel it's wrong, then address it.

BILL: Thank you very much. If you'd like to obtain an additional copy of this interview, or a written transcript, please call The Elder & Disability Law Firm at (913) 338-5713. Again, that's (913) 338-5713. Thank you very much.

Copyright, 2000-2004 The Alzheimer's Resource Center, Inc. All rights reserved.


Editor's Note:

My good friend and Elder Law Attorney William Hammond founded The Elder & Disability Law Firm in 1996, as he puts it, "out of necessity." Hammond's mother-in-law fell and broke her hip the previous year and Bill and his wife Mary became her primary caregivers. The law firm grew out of his frustration in trying to track down the answers to legal questions that he was now facing on a daily basis. Bill decided that the answers to the questions he and his wife were facing needed to be more available to the public and so the firm was founded.

Today The Elder & Disability Law Firm serves clients all over the states of Kansas and Missouri. It's not unusual to have people drive in from several hours away to meet with the staff and attorneys of the firm and to get help with their most pressing elder law issues.

Almost from the first day that the firm opened its doors, the families who have a loved one with Alzheimer's have been flocking to the firm. Over and over again issues of caring for a loved one with Alzheimer's have been raised. Over the years the attorneys and staff at the law firm have developed a real expertise in helping people suffering from memory loss. That in turn lead to the establishment of the Alzheimer's Resource Center.

The Alzheimer's Resource Center is dedicated to helping families throughout the U.S. understand better how to care for and plan for their loved one who has Alzheimer's Disease. The Resource Center is dedicated to helping families learn more about the disease and, more importantly, learn specific strategies that the families can use to reduce caregiver and Alzheimer's patient stress and keep the loved one at home as long as possible.

To this end the firm offers its Alzheimer's Survival Kit "the standard of information for the industry" as well as frequent Telecoaching Seminars teaching families the "hands-on" skills they need to learn to better care for their loved one.

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Copyright © 2004 Bob Cairns. All rights reserved.