i welcomed or only seniors to show the talks about senior living in elder care issues and their answers on tom callahan your host today we're going to be talking about hospice a service that is oftentimes very misunderstood my guest today is janet hayden director of the greenwood house hospice janet welcome to only seen you thank you so much time let's get started first of all what is hospice right so you're right there's such a stigma about hospice people get scared when they hear the word but hospice is really a program that helps people at the time in life where they're told we have no more hope for a cure so they may have been you know going through all kinds of treatments and and just declining over time sometimes with the elderly it's not such a dramatic twist it's like little by little someone with dementia you see they're losing ground you see that they can't function anymore and there comes a moment in time where the doctor may say what are we really doing do we really want to go back to the hospital over and over again or is that just getting to be cruel almost right and i call it frequent flyer yeah exactly and at that point they ask hospice to come in and we talk about how can we make someone comfortable in whatever environment they live in whether it's their home or assisted living or a nursing home even and make them comfortable and provide only comfort support towards the end of their life and it has to be determined from the doctor that they have six months or less to live given the trajectory of the whatever their issue is right now and that's not so and stone obvious writer suspects that's not an absolute written no it sure isn't and believe it or not people are surprised to hear that sometimes we sign people into hospice is especially people that have more like your old age kinds of issues and because they're getting a different lens that we're looking through and we make some changes sometimes we have to discharge them because they sort of get a little bit better or hit a plateau and you don't see that so often with cancer diagnoses so much but every now and then even with that hospice that's what i would like to say it really can be about hope honestly and about you know fulfilling your goals for life what do you really want it's all about what is your goal right and though that's our key word what is your goal when i worked on the for so excited i know a lot of times we would look at hospice for its palliative care yes could you symptom management so for instance you may run into a situation where someone is at home and they're having issues breathing and they can't catch their breath a circumstance where maybe they might have called nine one one and gone to the hospital if you have a hospice team were available three hundred sixty five days a year twenty four seven we would come out and manage this at home under the doctor's supervision obviously with medications maybe oxygen and different treatments and then this person is able to stay in their home with their loved ones but be comfortable it's all about comfort care people though do get palliative care while they're still being treated for their illnesses so i always like to say when someone says hospice that doesn't mean your care is over because people think oh my gosh no more treatment actually there is still treatment but it's palliative it's comfort and symptom management again come back to my days at the so we started this we often times and you mentioned it we had people we said graduated from hasa that's right reason they didn't move out and go to the great beyond its means that they actually got better that's right that's right and they come off of hospice and we're happy to see them again should they need us at a later date we had that happen several times and it's always a really nice occasion when that happens obviously now you also mentioned a hospice team one who makes up a hospice team for the entire that's the philosophy of hospice is a team philosophy it's an interdisciplinary team that provides the care so the head of the team is the medical director of the hospice when you come on to hospice there's a physician who is really usually hospice and palliative care certified who is overseeing all of the treatment elements that go on in addition to your physician people don't give up their regular doctors their doctor is also part of the team and then we have the nurses we have the hospice aides who are really highly trained home health aides a little bit above what a regular home healthy because they are out in the home dealing with sometimes very sophisticated tricky situations you have the social workers and the social workers are there to provide support to the family in hospice the unit of care is the family not the patient so and that's a very nice concept because as you can imagine this is often one of the biggest challenges and crises of family life is to have somebody in their home who they love taking care of them for the end of their days that's a big thing so the really the families are unit of care not just the patient then we also have spiritual care and that's a chaplain or if you prefer we reach out obviously to whatever to nomination you know you've been associated with all these years and we have volunteers as well name mentioned at the social worker and how they work with the families and i would say a lot of times families are take advantage of that service and they really should because not only is a hospice guiding somebody through could be possibly be the end of their days but the family needs to be guided through that as well you speak little bit more about this social worker and i'm a social worker so i really feel like this is a key element you're exactly  right and we also by the way follow the families for thirteen months after they lose their loved one and people sometimes really do take advantage of that later you know it is when you're in a crisis you're just moving forward you're surviving and then you know a couple months later hit you oh my gosh look what i went through and we are still there to sort of catch you when you fall at that point but the social workers can definitely help with family you know you have i call it the out of town it's interim with a daughter who hasn't been here comes in from california or wherever it is and tells the daughter that's been on the scene for every single part of this how she probably should be trying to do it a little bit differently so you know everybody means well but a social worker can absolutely help to sort of soften those edges when those things happen in our aids are amazing in this way too because they are the eyes and ears in the house a family may not even know to look for certain symptoms or certain dynamics in our age might say i think mrs smith is a little bit upset about her daughter you mention that hospice is you given at home or in the system living or in the skilled nursing home you can take us through a little bit of a process like once somebody is felt that they need how does somebody get on hospice usage written by a doctor's order take us from that point that so the doctor will say to the family or the patient i think we're ready for hospice now and that's always scary people here hospice and they immediately think oh we're in the last like thirty six hours and once in a while that is true obviously but we actually prefer to get somebody earlier in the process so we can really provide a wonderful quality experience and we have done so so the doctor's office calls us as i would like to for this person to hospice we will get in touch immediately with the family set up usually a family meeting meet with everybody and talk about what does this mean and at that meeting the first meeting it's always what is our goal and you want to is the patient if they're able to speak and you know they have the ability to talk about this and you want to is the family what are we looking for here what is it that you hope to happen sometimes a patient will say i have to get to my granddaughter's graduation i mean it could be something like that you know it could be i just don't want to be in pain i want to be comfortable the family might say we just can't face going back to the hospital anymore it's just awful in the hospital and we just want her to be surrounded by all of us so you really define the goals i always ask at the same time what are you most fearful of because if we know what you're most fearful of we'll be trying to make sure that doesn't happen and to be there by your side i say hospice says you know we're on this path together and we will be on that path right until the last moment when you're going to you know take your journey somewhere else but we'll be right there with you along the way as your partner until that happens ok now what's needed is there any special quitman that need to i know because sometimes i know hospital beds are brought in could you take us through that process that's very individual right so oftentimes with hospital sorry hospice you're going to need a hospital bed maybe not right at first you know we always send out oxygen sometimes we hide it away we don't need to look at that until we need it and then there are certain medications special medicines that are sent out also in an emergency sort of kit we call it the comfort pack and we'll say to the family just put it in the refrigerator the reason we say refrigerator is because then every family has it in the same place so that at three o'clock in the morning they're not saying where did i put that thing right that has that scary medicine that everybody's terrified of which is morphine ok and morphine people are afraid of because they think oh my goodness if you take morphine that's the end of it and in fact the dose that we generally start out with morphine is less than half a percocet which many people are given if they have a tooth problem so i always say that to people because i think it's important to know we are not knocking people or out i mean we are trying to just make them comfortable and we use morphine more for breathing reasons than for pain actually because it eases the respirations it's nothing worse than looking at someone who's gasping for breath we don't want that so it's there's a term for that  sort of a balancing act every day you know to make sure that you know you have to just medicine up down in out whatever it takes to make sure that you're comfortable it's it is very difficult watching somebody go through that yes it's very difficult and what's even worse is seeing a person being in pain yeah gasping for that air and you know you know you want to do something and that's why i always highly recommend bringing hospice and as you said as early as possible yes and if you can speak about the importance of the dignity it is dignified it's about the dignity in the choices that the patient and the family have made right so we want to make sure that it is dignified that you're not having that less minute crisis that you're really never going to get over if you're a family member to watch that you know that is just awful so that's what i'm saying the earlier we get people the better off it is so that we can make sure that you sort of keeping an even keel on the pain on the breathing that it's it's just one step at a time you can see that people are losing ground usually that they're sort of diminishing that they're sleeping more that they're not able to interact as much so that's all the natural part of the process people also get really upset about eating obviously in our culture most of us you know what do you do when you celebrate you eat what do you do when something fun have a let's go to dinner right so the eating is a really big topic too for families because the natural condition of the human body as it starts to slow down and shut down is you don't want to feed yourself anymore if you think of cancer patients again the list thing you want to do is put a big plane from the minute really feel nauseous believe it or not but in every kind of condition the same thing happens so we say give tiny little bits of food and generally pleasure food if possible something that that person really likes  yes right if not then went right exactly right absolutely so and the fact of the matter is there may come a time when they just don't want anything that's so hard for a family because you feel like at least that's something i can do right so we try to give some clues on other things to do and and we never say don't like to restrict food completely but there's ways to keep the mail sweat and offer a little bits here and there but that's a tough thing for people who really see stuff and it's something it's sept because somebody stealing not only with losing a loved one but they have to let them go yes and that's another one of read read into that is people don't realize that you know their loved ones will try to stick around as long as possible yes getting permission it's very interesting right and we've seen all kinds of things on this arena so you know you wonder are they waiting for somebody to come are they you know what's happening you try to figure it out sometimes you can sometimes you can't but i do not believe that i have i don't think it's right for me to say you need to tell your mom to let go because sometimes people are never going to be ready to say that but rather than that i will say to people maybe let them know that it's going to be ok that the family will take care of each other because really as a mother or father if you know that your family is going to be there for each other you may relax enough to let go so to speak right and and sometimes a person doesn't get there where they're able to even say that and we do try to be there to help the family again that see that's taking care of the family really because to think of a world without that person whoever it is that they love it's unimaginable right so we try to try to just gently guide everybody in the direction of saying whatever they need to say to see if someone is confused or not or even not conscious we still encourage you to talk to that person we don't know how much gets through even people in comas they woke up they can say i searched because they said the hearing is so last let's to go this is what they say so we're really very aware of this and we say to families do not have certain conversations in the room and don't be fighting you know yet and if you're at a loss for what to do if somebody is unconscious i always say you know what talk about old times tell old stories even funny stories about trips and different experiences that you had like what a lovely way that would be to be surrounded by your family hearing fun things from the past or you know meaningful touching stories that would be a lovely way to maybe leave this world through how comfortable gives our society with the process of the jing and dying  i mean right now you know you go to europe and it's completely in asia it's a completely different ballgame right we are so far behind in this unfortunately i agree with your and it's tough right because it is a part of life it is and will get somebody who's ninety five years old and the family is still sending them to the hospital like every couple weeks and you know you just think what are we really trying to accomplish here so our the education piece these days is about just that let's talk about this sooner rather than later not even hospice but the conversation about what does mom or dad or uncle joe or the husband or what do you really want as things sort of de rescue exactly right progress through life absolutely and we really encourage that like start having the conversation earlier rather than later and not like mom what do you want when the time comes because that's a little bit threatening but more like she you know i saw on the news or i heard from sally i had a friend why i don't think i'd want that help or your mom what would you want you know i always suggested to go that route and you might be surprised what you get back you know but you'll sort of have an idea in your head what your family member was thinking that's another bad thing to end up in an emergency room with someone who can't speak at that time for whatever reason and not have an idea what is it would they really would have wanted under the circumstance so the earlier these conversations happen the better i'm i'm a big proponent for getting that information into writing absolutely and if somebody wants to argue with me i'll be like terry scheiber oh absolutely yeah that's a little you know here we have a family who didn't have it in writing and you look at what happened there and that hospice is so much more than what you think it is yes i have a client recently while blow over a year ago who was obviously dying and you know i was suggesting hospice and she said no i'm not ready for hospice right and he had finally said it's not about you right it's about mom and i will say within a day hospice was brought in but then you only get a week but at that point i know because and they don't realize where there ribbon saying for the family as well and to be on that journey by yourself trying to make all these decisions without support is horrible so when hospice comes in very often they feel like we're part of the family for that brief period of time and they think i couldn't have done it because you know what happens when you're in the middle of a crisis in your family your friends fall away a little bit you have your little porker hopefully that sticks with you but frequently because it's just scary for people it is and so this way you have a team who were strangers a minute ago but now hopefully you're feeling that you trust who can be with you through that and then when it's over kind of little by little back off people have her herd mentality and yeah and you know people you know some people look at that think oh yeah you know we all band together and so i know when there's a week one or hurt one in the herd they separate out so the saturn gets taken first and that's what we do as humans we do  that when somebody is very sick or dying you know people are over there is going to visit yet first first yes falls away because internally we don't want to deal with it it's scary it is it is scary you know guess what folks none of us are getting work and with the process so the key to being a good hospice i think is to be to not be judgment because really you go into a home and it could be cultural could be religious you may never have seen this before the way that they interact or the different customs they have interests we know judgment no judgment teach me oh my gosh i haven't seen this tell me about this how is this how does this work i had a lady who it was just her culture she was very very very loud and very shy and i said to her you know do you feel like you have to because i thought i was supposed to like just scream when i was upset i said well if you need to go ahead but you don't have to offer really i mean like really that simple you know so you just have to ask questions and has to be educated honestly and respect you know we have to respect whatever beliefs are there and it may be very foreign to us but it doesn't matter it's their belief so we need to go and that's another part of dignity isn't it to go along with that now what we try to do is i said before we as for the goals and i just thought of them with this neatly who loved going to the opera and she she had a respiratory pulmonary stuff or it's she was on oxygen big time and never lies it always comes up also has to do is go to the opera one more time well she was living in ewing new jersey and there's not an opera house nearby that she could necessarily get to right she used to go to the metropolitan opera no we found that there was a screening you know at the movie there was a theater so this was part of what we felt was our our goal for her was to get her to that screening so we arranged so that all the medicines were given appropriately we important i think so yeah i really do and some people need it more than others you know and that's fine again wherever you are on your journey that's where we're supposed to meet you and so that's what we do and sometimes people are really surprised afterwards again how it hits them i had a lady who was a very high functioning professional woman just kept she was an amazing lady who about three months after mother's death called me and said i'm not even able to function in my work i'm so upset because and it thr for a loop she never experienced such a thing so we were able to help her and say you know what it's ok it's ok like part of this is normal just to normalize these things sometimes it takes it takes a burden off of somebody and she actually for a little individual counseling and then we sort of referred her to somebody else and she got there about six months later she said well and she had a nice experience with going but she didn't realize what a hole in her heart she would have after what she really just didn't you can't imagine and you don't know until you go through it exactly and it's a lot of times i thought people need permission to grieve and yes because they think they have to be so strong during this process and i know i've got to get through this i've got to get through this and they keep setting these timelines for themselves too and there's no timeline for that right i mean i hate that i hate you know that you're supposed to recover i think that's absurd you don't recover from grief you learn to live a little differently i mean i think that's what it is you incorporate it into your experience and you learn to live differently and we can help with that too honestly especially around the holidays the first holiday after somebody dies you know that's a tough one whether it's thanksgiving you know an empty see you know some people again try to pretend it's not happening that's probably not the best thing because then it's too much pressure so we do try to sort of give a little guidance in that regard as well it's tough as tough for them i've lost my mom eleven years ago and a friend of mine after she lost her mom called me and you know a year almost a year into her after her mom passed she's like you know when does it go away right and i said i'm like it doesn't go away you know so it just goes from a stabbing pain to a dull ache right right and i always say it always hits you too you know you go back to work and you think i have to keep it together and we're ok so generally you do i think but you're in the grocery store and you see the cookies your mom liked and you're just fall apart and you find yourself sobbing in the grocery store that's grief to me it hits you when you least expect it sometimes you know because you can kind of be strong in front of people sometimes and then you're like what is wrong with me and i'm sobbing in the grocery store you know it kind of hits you like that and again people tend to distance themselves from that it's again another little scary thing so we're here for that as well and where is greenwood to help us in the hospice located so greenwood house is a nursing a skilled nursing home that's in ewing new jersey it's enough for profit nursing home it's been there a very long time but i'm going to say seventy five years but i could be wrong out of greenwood house crew assisted living in a hospice and home your program as well so our hospice literally grew out of the fact that the people that r greenwood house said we would like to get more involved with taking care of people at the end of life from a hospice perspective because believe me they know how to take care of people at the end of life that are but they wanted to sort of get their own team to come in so again we do it at home we do it at nursing homes we do it at assisted living stiffen facilities people think hospice is a place and it can be there or in new jersey not so many but there are a few inpatient hospice you know those are generally for people that have symptoms that are out of control and that you know probably like five or six days to get the symptoms out of control and then go back to wherever it is that they live if it goes on longer them that people don't realize you have to pay room and board to stay and that's a big thing the money is a big thing it is for costs is mostly covered by medicare and other insurances term and health for it out to you cover to cover mercer county obviously grocer county monroe township a little bit of burlington a little bit of middlesex yeah ok and how can somebody get in contact with greenwood house so they can call us obviously so greenhouse hospices six zero nine eight eight three six zero two six and then of course they can look on the web not someday you and your loved ones will pass away as janet was saying we should really be having this discussion and give it a lot more dignity than it sometimes gets on tom callahan thank you for joining me here