Spotlight on Care: Alzheimer's Caregiving

Choosing the Right Hospice Care with Heather Kruse

September 20, 2022 UCI MIND Season 1 Episode 26
Spotlight on Care: Alzheimer's Caregiving
Choosing the Right Hospice Care with Heather Kruse
Show Notes Transcript

Steve and Virginia are joined by Heather Kruse, a licensed RN who specializes in dementia and hospice services. Heather was the hospice nurse for Steve’s wife, Patty at the time of her passing. She discusses the different services offered during hospice care and the things to keep in mind when deciding on hospice for a loved one.

Intro: 00:06

From the University of California, Irvine, this is UCI MINDs, spotlight on care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias. 


Steve: 00:24

Hi, this is Steve O'Leary with spotlight on care. And I have with me my co host, Virginia Naeve, and our special guest who will be talking about hospice we’ll introduce her in a second. This is an important topic for end of life with Alzheimer's and other forms of dementia. And we're excited to be able to do this talk Virginia, is there anything you'd like to talk about? As it relates to that?


Virginia 00:45

Well, I can mention that when mom got to the end, and was in bed, not eating Clearly, clearly, she was at the end. And it kind of threw me upside down. I didn't have any thoughts about what should I do, who's what's hospice, bring them in. So mom was in a community, and they found a hospice company for us. And when they came in, I was so impressed. They were calm and reassuring. And I just thought it was all very kind and very interesting. And I was glad that I didn't have to go out and find somebody. But that is I have a few things to say. But I have, I don't have a lot to say about hospice. I don't know that much about it. And that's why I'm glad you're here. Heather


Heather 1:44

thank you so much.


Steve: 01:45

I think that nobody is really ever prepared for hospice unless you've had a parent or another loved one go through the procedure. And it's quite different for dementia patients in terms of that, and we'll get into that. But I think what what Virginia touched on is the the real relief is for the caregiver. I mean, I think that in my hospice experience, and I believe in others, it is a you have a guide, and you have someone who can kind of hold your hand and help you through the process and let you know what's going on. And it's amazingly comforting and and makes a huge difference in a very, very difficult time. So with that, let me introduce our guest, one of my favorite people in the whole world. This is Heather Kruse, a little bit on Heather's background. She is a licensed RN in four different countries. She is started off as in nursing and evolved into hospice nursing as a real calling for herself. She's trained as a specialist in dementia and hospice services. She worked for five years as the director of nursing for Silverado, a local organization that supports dementia care. And most importantly, she was Pattys and my hospice nurse at Patty’s passing. So, Heather, anything you'd like to add to that background? Before I start in with some questions?


Heather: 03:19

Well, Steve, it's great to see you again. And what a privilege to have been your wife's nurse, and support for you during this difficult time. The thing that I would like to add is that hospice is definitely a calling or it should be, it's not just a job, because end of life is something that happens to all of us. It's not just a disease, that you can go to the hospital and have something removed or fixed. Hospice is the end of life. It's the end of a relationship and to give a person, a comfortable ending, to respect that person who they were, especially with dementia, because things change, and to support and educate the family. It's a privilege. It's a pleasure. And it's an absolute gift. So I'm so thankful that in this country, this amazing country of the United States, we have the ability to provide this through Medicare, and I'm so thankful that we can do this.


Steve: 04:19

Well, that's a great opening. How did you decide to focus your nursing efforts in hospice? What was the motivation? 


Heather: 04:27

I was working as a director of nurses in a skilled nursing facility in San Diego County, and I met a nurse who kept visiting a patient and she would come and give orders and instructions and she was so wonderful. And I asked her, What is it that you do you're a visiting nurse? I'm a nurse, what do you do that I don't do? And so she started explaining about hospice and how at the end of life in this country, hospice comes to the patient to where the patient lives. I'm used to hospice being a place where people go to die, a hospice house. And it's kind of a negative connotation. But when Pearlita came and visited the patient, she brought a whole supportive system with her. And, and she educated us on the end of life. She educated us on hospice, and I fell in love with that. So much so that I left working at the skilled nursing facility. And I went and I joined this wonderful hospice in San Diego, where I received excellent training. And hospice has been in my heart ever since then.


Steve: 05:37

Well, that's a great story. How does hospice for Alzheimer's or dementia patients differ from traditional hospice services?


Heather: 05:46

In traditional hospice services, the patient can discuss and ask questions for themselves. They can agree or disagree with patients that are on hospice with dementia, the patient is 100% dependent on the care being provided by their caregiver who is usually a loved one, or someone at a nursing home where you have professionals. And so the care is given to them and for them, hopefully, by people who care about them and will provide the best possible care. Understanding that dementias have many different facets. There are behavioral disorders, there are eating disorders, there are coughing and choking disorders that we have to deal with, which often don't happen with someone with perhaps a cancer or a heart disease. And so we have to plan what may happen. We have care plans we discuss with the family, we educate a lot. And so we're caring for the patient on their behalf. 


Steve: 06:49

Okay, so big difference with another type, you would be dealing with the patient more directly in this case, because of the cognitive issues, you're dealing with the caregiver or supportive other members. 


Heather: 07:01



Steve: 07:02

 How or who starts hospice service for dementia patients? How does that happen?


Heather: 07:10

Well, it really depends where the patient is living, whether they're at home, whether they have a proactive spouse who takes them to the doctor for visits, and usually a doctor would say, you know, your wife, your husband, your parent is needing more care. They have a prognosis, or a life expectancy of about six months or less, perhaps a little more. Because you know, a doctor isn't God, they do know a lot, but they don't know the actual time or date when the person is going to pass. And so a doctor will look at what's happening. Usually in an assisted living a board and care, a nursing home. The nurses there will speak to the doctor and the family and say, you know, I'm seeing a decline, cognitive physical, and I believe that we're getting towards the point where a hospice evaluation, extra supportive services will be beneficial for your loved one.


Steve: 08:01

What are some of the requirements you say an evaluation, what's the evaluation that it's done?


Heather: 08:07

Okay, so the hospice criteria is provided by Medicare because Medicare is the payer source, and sometimes you have a secondary insurance. A PPO sometimes includes hospice benefits. And so for Alzheimer's, dementia and most other dementias, the LCD criteria should be that a patient should have all of the following criteria and there's a list they should have a FAST score, which is the functional assessment staging tool of beyond seven, and that's a whole long list in itself, they should be unable to ambulate without assistance, unable to dress without assistance, unable to bathe without assistance, they should be incontinent of both urine and feces. They should have no meaningful verbal communication and stereotypical phases only or the ability to speak or a limited of about six words cognitively. Just yes, no and maybe one or two little other words, they should also have a history of perhaps aspiration pneumonia pyelonephritis septicemia, have a history of skin breakdown with decubitus ulcers, fever recurrent even after antibiotics and have the inability to maintain sufficient food and caloric intake with 10% weight loss during the previous six months or a serum albumin of less than 2.5 deciliters. So that's quite long, but usually a doctor or a nurse that takes care of this patient or a caregiver can see the decline and say I know that this person is now getting close to the end. All of these other things are just tests just check off marks. But a doctor would know so usually the primary care physician that they knows the patient very well, will know that yes, these are the things that are appropriate for hospice evaluation.


Virginia: 10:07

Heather, um, is it different in different states? With Medicare, I would think that the standards would be the same in every state. But I was talking to a gentleman one time who said that his daughter was now on hospice, and she was walking and eating and functioning fairly well I thought,


Heather: 10:33

well, that's a very good question, Virginia, because it really depends on the nurses and the doctors as to their assessment. And their ability to document negatively for Medicare. Medicare guidelines are national, the whole of the United States should have the same standards. But unfortunately, people feel that they can admit a person onto hospice services earlier, even though they don't meet all of the criteria. Some hospice nurses do fudge the documentation to suit themselves. So yeah, it's pretty sad.


Steve: 11:11

Well said, fudge. So yeah, I had always heard that it was weight loss, that that was a turning point issue. Is that anything, you mentioned that as one of the criteria, but is that like, a particular thing that a caregiver might look for or might be aware of


Heather: 11:30

that is usually one of the Telling Signs, one of the first Telling Signs when there is an appetite decline? Sometimes, a dementia patient will still be eating, eating and drinking and doing normal activities like that. But the weight is just falling off. They're malnourished, even though they're still eating, their body is just not able to metabolize any of the calories that they're taking in. And that is one of the very telling signs. 


Steve: 11:59

Great, thanks. When you start hospice for dementia, you mentioned six months, give or take. Is is end of life coming soon. Is that as a caregiver, the mark, it's like, if you don't have everything else in order, now's the time to get it in order?


Heather: 12:18

Yes and no. So yes, because the hospice criteria is pretty strict per Medicare guidelines, it should be around about six months to a year. It's a guesstimate, as they say here. But it's something that a person who is caring for a patient with dementia is seeing themselves, they know things are becoming more difficult. Mum or Dad or wife or husband are declining more rapidly. I need more help. But I don't know where to turn, mom or dad is losing a lot of weight, they're a lot more confused. They're falling. And all of these other things that I had mentioned the incontinence, the frequent aspiration, where they're coughing and choking on food and fluid. All of these are telling signs. So yes, we are getting closer to the end of life about six months to a year. But at least you do have that six months to a year to make your final preparations for funeral for family, for having that one special photograph or gathering to celebrate some things. And it's actually a good time, because you can make it a positive thing as I know you did, Steve.


Steve: 13:29

Thank you. That's a nice compliment. Thank you. So can hospice be discontinued after it started?


Heather: 13:38

It can be you can be discharged for extended or prolonged life expectancy. Sometimes a person, especially with dementia will have a rapid decline. But then they'll stabilize though it's it's like a step. You're going down, down, down. But then that step just continues straight for a little while. And if they continue for a few months without any changes, you can discontinue hospice for an extended prognosis, because there's no changes. But hospice can be continued. It can be started the next day, the same day. If there's a change. If that decline comes back and it's more rapid, then you can be admitted back to hospice services without losing any of your benefits.


Steve: 14:24

You said hospice services. What does hospice services include? Or is there a list that is standard?


Heather: 14:32

Hospice is a team approach. You have a medical director of the hospice So a patient or a person who goes on to hospice will have their own primary care physician who may or may not want to continue to follow them. Once hospice services has started. You have a backup physician you have a medical director who is trained in hospice and so they know what to do for doing comfort care, providing palliative services instead of aggressive treatments, no more hospitalization, for example, and they will take care of them in the home. So you've got the medical director, you have a nurse an RN, who is the case manager, who will visit the patient at least once a week to do the care oversight to prepare the plan of care with patient and the family, the caregiver, whoever the caregiver is, there's usually a licensed vocational nurse that will go out and assist with care as well, depending on what the patient needs, whether there's wound or wound care to be provided, or if the patient needs some help with feeding, that kind of thing, education for the family, closer care and watching of what's going on. So depending on the changes that's going on with the patient, will depend on how many times the nurse will visit. So you've got your RN, you've got your LVM, you've also got a social worker who's involved a social worker is very beneficial, especially in the case where there are some financial issues, they help you get your VA benefits in place, they help you get your Medicare Medi Cal in place, if necessary. They help you with the final funeral arrangements, if they haven't been set up, they help you to choose what's appropriate for your your cost of living. They're also very good at helping with family dynamics, because often there are dynamics in every family, whether it's the parents or the children, some disputes and a good referee is your social worker. There is also a chaplain that is provided. And the chaplain is nondenominational. Even though they may have their own religious preference, they help to provide spiritual care for your loved one, towards the end of life. So if you are a Catholic, and you want a priest to come out and say a blessing, give the final rites and pray and do communion, they will arrange for a local chaplain or a priest to come out and provide that service. If you're a Hindu, if you're Muslim, if you're any other kind of denomination, they will find the right person to come and meet the needs. And sometimes it's for the family member as well. You know, the patient might not even know and they might not care about any kind of religious background, but the loved one may need it. They may need some prayer and some hand holding some spiritual support. So that's a wonderful support that's provided.


Steve: 17:32

That's great. How long does this last? Is there a time limit? I mean, Medicare's covering it for how long? 


Heather: 17:39

Well, Medicare does cover this for six months is the expected life expectancy. And then it can continue if the patient continues to show a decline cognitively, physically, as long as the nurse can say from one face to face examination to another, the recertification period is every 60 days. And if there is a decline, you can continue to receive hospice privileges, but the hospice itself is actually paid a little less, the longer that the patient remains on services. So basically, the hospice company receives less money and they can determine whether they will continue with hospice services, or whether they will discharge the patient. However, if the patient is continuing to decline, they have to eat it as a little bit of a loss and cut their corners just slightly. One of the other services that I didn't get to mention was home health aide comes out to assist with bathing. And that's really beneficial in a home where a person is in their home being cared for by an elderly person. Having a bed bath or a shower by a professional who knows what they're doing is really beneficial as well, that's provided two or three times a week as well, as well as volunteer services. Sometimes someone just needs to go out and have a cup of coffee. A volunteer can come and sit with the patient for an hour or two. They cannot provide any caregiving assistance. They cannot change an incontinent brief or take them to the bathroom. But they can be there as a watchful eye. And that's all provided by hospice.


Steve: 19:17

Your knowledge just always blows me away. So how do you select one hospice service from another?


Heather: 19:25

There are many different hospices out there. There are some very big companies, and there are smaller startup companies, there are for profits and not for profits. The best resource is your physician because your physician knows who they like to work with. They work with the nurses. So the nurse will say Okay, Doc, your patient looks like she's got a urinary tract infection because she's showing these symptoms. Can we have an order for an antibiotic please? And so the communication between the doctor and the nurse is imperative if the doctor has a good relationship with a particular hospice who has good nurses working for them, he is more likely to refer you or your family to that hospice. There are some that don't have good training, there are some nurses that don't receive education on dementia. And so you really need to be looking at a hospice that has a specialty with dementia, and dementia training.


Steve: 20:27

That's a really good point. And I recall that I actually interviewed three different nurses. And it really got down to the nurse, not the company, or their set of services, because the person you're going to be dealing with, is going to be the nurse. And that comfort that you feel with that person. And the connection that you feel with that person is critical.


Heather: 20:49

Well, that's right, because the nurse is your advocate, the advocate for you, the advocate for your spouse, or your parent, as you're going through this, and they are the ones that will educate you and support you through end of life. And so building up a rapport is imperative. And again, the doctor also has that rapport with the nurse. And so it works as a really great team in choosing the right hospice.


Steve: 21:16

What about the possibility that you're not totally happy with the hospice service you have? Can you change hospice services?


Heather: 21:23

Absolutely, it's your right. And it's your privilege to choose the right hospice service for your loved one. So if you find that your nurse is not listening, if they're not paying attention, if they're not providing what you feel is essential, if you've spoken to other people who have received a different type of service from their hospice, you can cancel your hospice, you can disenroll your loved one and sign up with another hospice, you can transfer during your certification period. Or you can just disenroll and join up with another hospice service if you'd like to later on, never settle. Don't just accept, you need to be the advocate for your loved one.


Steve: 22:08

And this might be a tough, tough question for you to answer but knowing you you'll bat it back or answer it correct in your in your own style. What are the key things that a caregiver should be thinking about and concerned with when hospice begins?


Heather: 22:25

When you're talking about a caregiver, are you speaking about the loved one the spouse or the daughter or son? Or are you talking about caregivers that are in an assisted living or a boarding care?


Steve: 22:36

I think we're talking about a family member I that's what I'm thinking about. I expect that the organization board and care, whatever it would be work are going to be doing whatever they've done before. I'm curious to give advice for those people who are like, what should I be worrying about as an individual as a loved one?


Heather: 22:56

Okay. Well, as mentioned previously, there are many different types of dementia. And towards the end of life, there are some commonalities like the loss of weight, sleep issues, aspiration issues, skin integrity issues. And so the loved one needs to be educated on how to change diapers, how to do good incontinent care, you can't just leave your loved one in bed all day laying in the same brief, because of skin integrity, because of pressure sores, discomfort, they should know about repositioning a patient, they should know about what types of food to feed this person who can no longer eat a steak, you should go back to like baby food. And you're going from one extreme to the other. When you start off as  as a baby, you start off in diapers and, and drinking milk, and then you go on to pureed foods. Well, this is now the other extreme, especially with dementia, you're going back into diapers, you are drinking milk, again, you're eating soft foods, you're incontinent, and you can't care for yourself. So there's so much education that needs to be provided by the hospice staff. And as mentioned, there's a caregiver that will come in and do the bathing care, and they will look at the skin thoroughly. They will clean it and dry it and say, Oh, Nurse Heather, there is a pressure wound here, or we're a little concerned because he or she is not being repositioned frequently. The skin is very dry, we're going to have skin tears. I've educated the wife, but I think you need to also do some education. So we work as a team to educate the family on things that they don't know. We also provide a book that's called “gone from my sight”. It's a little blue book, everyone knows it as the Blue Book. And the blue book tells you about the expectations as a person gets closer to the end of life. And it's very helpful. They often read it and say, Oh, well the book says that mom is at this stage. We're about three weeks from passing. What are you Think about that. And you can sit and you can talk about it. And what you must build up a rapport with, with the family so that you can discuss all of the changes that may or might may not take place. And of course, there's mentioned that they may have some behavioral issues. And so it's good to have a nurse that is well trained with behaviors, especially in dementia, because there are medications that can really help to calm a patient, if they start sundowning. Or if they start striking out, or if they're anxious or agitated, if they start talking about loved ones that have deceased, there are many different things that you can do to try and educate the family on this.


Virginia: 25:41

I have a memory of our hospice worker, feeling mom's feet, and the skin right above her feet. And she looked at me and she said, it won't be long.


Heather: 25:55

Right, right, that's to do with the circulation and how things start to shut down. We feel for pulses, we feel the circulation, you know how your feet start to get a little cooler. And sometimes they start to become cyanotic. And, and you get a blue, bluish tinge to the knees, to the toes to the fingers to the to the nose, actually the tip of the nose. And these are different signs that you can tell. And these are things that you start teaching the family, not something to worry them, but something to help them to be more prepared.


Steve: 26:28

Having dealt with my own hospice situation and watching my wife deal with her Hospice of her parents, I was always amazed at someone would do this for a living over and over and over and over again. What makes you want to do that?


Heather: 26:50

for me, it's an absolute privilege and pleasure to know something so well, that I can do this and help somebody, you know, other people helped me, I am not computer literate at all. But my son is great. And I turned to him. And he teaches me, and I really appreciate it, it makes him feel good. When I can help people who are desperate to take care of their loved one and to know what to do in this hopeless situation. It gives me such a sense of accomplishment and reward. I have a very strong Christian faith. And I use that to help my families get to the end of life. Because we all look at the beginning of life. And we will look at the end of life when we get to the end of life. And whatever your your strengths and your weaknesses are. That's where you can use them. And this is my strength.


Virginia: 27:45

Yes. You know, I truly I still look back at that hospice time. And it's still fuzzy to me, because I was so upside down. But I didn't know it was such a big team. 


Heather: 27:457

It's a huge team


Virginia: 27:58

I would have told somebody that I met today that, oh, we had a wonderful hospice nurse. I had no idea there were so many people in place to help. I'm impressed.


Heather: 28:10

It's wonderful. I'm so thankful that Medicare provides this. And if I could just recommend anything, it is educate the nurses, when you're a hospice, educate your nurses on dementia, because other things you can learn from doctors, other things you can learn from the patient. But these patients cannot speak for themselves. So education about dementias the many different types of dementia, and the potential things that can happen during their last six months of life. They should be known by nurses by caregivers. I know that there are many nurses out there that are fantastic. And know this, but not every hospice educates their team on this.


Steve: 28:54

Yes. And with a growing number of unfortunately, people passing from dementia cases and Alzheimer's and that number is not going to change finding the right people and finding someone who has that background and information is critical. 


Heather: 29:08

That's right. 


Steve: 29:10

I just like to end by telling my small story about Heather. I remember vividly. I hope this helps you all as you enter this phase, being scared, thinking it was going to happen tomorrow. Thinking hospice was immediate thinking all the things that I'd kind of heard about it. And the information and the education gave me so much more, to deal with the situation to be prepared to help my kids. I felt like you never feel like you're in control with this disease. You never feel like it. But finally at the end, I felt like I was in better control than I had ever been before. And thank God for Heather Kruse.


Heather: 29:57

Thank you so much, Steve.


Virginia: 29:59

Thank you Heather


Heather: 30:01

thanks, Virginia.

Outro: 30:03

Spotlight on care is produced by the University of California Irvine, Institute for memory impairments and neurological disorders, UCI MIND. Interviews focused on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit