Episode 8 – Betsy Wurzel – Hospice Care for late stage dementia
In Episode 8, we delve into the world of hospice care for late-stage dementia patients. Our guest, Betsy Wurzel, shares her personal experiences and insights into the caregiving journey. Join us as we explore the challenges and options faced by caregivers in providing the best care for their loved ones.
Diane Carbo: Hi, this is Diane carbo with caregiver relief. And today I have with me, Betsy Wurzel who is a podcast host for chatting with Betsy is our dementia care specialist, as well as a caregiver coach. She’s also the founder of kick Alzheimer's on Facebook. I’m so excited to have you with me today.
Betsy Wurzel: Thank you. And I’m always excited to talk to you, Diane. I love talking to you.
Diane Carbo: I love talking to you too. Cause we have so much in common and we have so much information that we can share from our experience. And your experience comes from caring for several family members with dementia. And today, which is right into what I’m doing. I’m doing an end of life series a with an one of my end of life specialists. And we have been talking about advanced planning . When you said you wanted to talk about hospice , I thought that’s a perfect topic. In with what we’re already discussing. Had hospice for my dad I’ve worked in hospice, I’ve done home care, helping people when they pass and I’ve been at the bedside of many, a dying patient. But you have probably a different perspective than I do, because you’ve actually been the caregiver that has had to make choices and decisions based on end of life.
So I’m excited to hear your perspective.
Betsy Wurzel: Oh, thank you, Diane. No know is diagnosed in 2010, we had living wills made for the both of us and Matt made his wishes known. Cause I said, I don’t want to have to make that decision. So I, we, I got the power of attorney and the power of, medical which is very important to has they don’t like to talk about it, but you have to make your wishes known to your loved ones. And I’ll say this, and I said the saying, and a little time, you don’t have to like what they put down. You have to respect it and honor it. There’s a difference.
Diane Carbo: Absolutely. The biggest point I want to make here is that you and Matt made decisions early while he was still cognizant and aware and knew what he wanted. So many family members delay. You can’t allow that delay. You need to do it as early as possible.
Betsy Wurzel: Yes, definitely. I highly recommend really everybody over the age of 18. To have a power of attorney financial and medical and do a living well because you never know what could happen. It could always be revised. It could always be updated, but you need to have that in writing. You do not want the state of wherever you live coming in and deciding for you. You want to make that decision.
Diane Carbo: I’m a hundred percent in agreement with that point.
Betsy Wurzel: Absolutely. Yes, I had my son last year. It was on my mind. Anyway, but with COVID it really, hit me over the head that I wanted to Josh go to a lawyer to have as well and get power of attorney attend for when I need it. And so that’s what we did. And Josh was 36 last year. So I highly recommend that for everybodyMo was losing weight. Near the end of his life. And the neurologist said you could have a feeding tube placed in, so feeding tube for those who don’t know, it was, a procedure and it’s not pleasant and they put a tube in your stomach and you could get that way. I’m at some other hall that, she don’t want it, Matt, they don’t want to thank you for starving as mother I said to the neurologist absolutely not. Matt does not want that. And why am I going to prolong his suffering? That’s how Ifelt. Everyone’s different. What people need to realize. Diane, I think people have trouble with this is that at the end of life, when the body starts shutting down, they don’t need food. You’re not starting again. People had this impression on starving them. I feel guilty, withholding food from them when you’re dying, your body doesn’t need food. Not as fast. It’s giving me a dying person food may complicate things.
Diane Carbo: People need to understand that life-sustaining measures have muddled death and dying and it used to be when I went into nursing 50 years ago I can’t believe it’s been that long that you went to the hospital or you died at home. And there was nothing done. Now today we have life-sustaining measures, pacemakers, defibrillators, feeding tubes, artificial ventilation, and the medical delivery system. And I’ll say this over and over again. Lets people down. In fact, a lot of physicians continue to treat in spite of the fact that there’s no hope for a better quality of life for a person because they see that as a failure on their part.
Betsy Wurzel: Cause their job is to prolong life. And I really hope that. Medicine changes where doctors will make it possible for someone to dying on their own terms and to say, okay, they lived their life. It’s yeah, we die. We live, we die. It’s a sound and we need to talk about it more and we need to, just doctors need to talk about it more, but they only have so much time. This is where, you come in Diane, I come in all these people that, get on a podcast and say, Hey, we need to talk about this. I highly recommend. I always tell people learn from my experience. I wish I knew people who could have helped me navigate the hospice process. You have for profit, not for profit.
I went with the hospice that was out of our local hospital that was recommended by the doctor. And unfortunately I had the home hospice, some hell experience. And just because they were in hospice doesn’t mean they’re educated as far as someone with Alzheimer’s goes.
Diane Carbo: Yes, exactly. Exactly. And I think that people think that all hospices are created equal and if they’re not . And you have the right to fire a hospice and get another woman and people don’t realize that as well.
Betsy Wurzel: Yes. I had Matt he went on hospice the day at the Thanksgiving 2019. And I was at the end of my rope. I thought hospice would help Matt. I feel they made him worse because the medications that didn’t help, they didn’t believe me that he was severely agitated and he believed me that he was dying. He didn’t believe me that he complained to the headache. I really had to fight for him. He fell twice. They wouldn’t come out to assess him. Can you imagine?
Diane Carbo: I have to tell you, I’ve had to fire a hospice. I had an amazing experience with my dad, but my mother-in-law not so much. And I have had so many caregivers in our groups tell me how they feel. Unsupported and not heard by a hospice company and the nurses and the lack of caring and the judgment passed on them for some of the requests they were asking and they were asking for help. And it just makes me sick. It just makes me sick because people don’t, people watch TV. We see this all the time. Everybody falls asleep in, they’re fine. They just die and it’s not like that at all for some people . Terminal agitation, which is, sounds like what Matt had is a terrible thing for a family to have to observe and experience. You feel helpless and hopeless and here you are, you’re an educated individual. You’re your nurse. And they still wouldn’t listen to you. That just breaks my heart.
Betsy Wurzel: Yes, they didn’t know who they were dealing with. Me quiet housewife and they soon found out this little Spitfire has a big mouth. Let that social worker who was very sarcastic she came to my house to find out. I was doing wrong and try to blame me on that condition and I just had to put her in her place. She said, nobody calls up hospice as much as you and I just said to me, and I said I, my husband’s out of the kit and I’m going to keep calling until you find a solution to his problem. You’re giving more of the same medication I’m telling you, it’s not working. Why are you doing the same thing? And then how I was given his medication was you can’t do it as you want it, do it and I said, listen, do not talk to me. And a condescending way do not talk to me like I’m stupid because I am not stupid and the licensed practical nurse, I gave out many medications for years, all on that, talking to you like that. I said to me, you are, and you need to stop. Nothing really was done. I knew I could change hospice, but here’s my dilemma, Diane Matt was really in bad shape. And, I don’t know about other states. I know that I had called the Medicare. I live in New Jersey. Yes. Medicare pays for a hospice, but they only pay for certain ones.
Diane Carbo: Yes. Yes.
Betsy Wurzel: And so there you have to, so there really wasn’t, I’m going to say much to choose from, and the amount of time the amount was home for three weeks on hospice from hall. And then he went up to the hospice unit, but after I had raised cane,
Diane Carbo: I was just going to say, why didn’t they offer to put him in a unit for a while?
Betsy Wurzel: Yeah, they were going to put him up in one of their nursing homes, but I didn’t feel that would be safe. And I said, we wouldn’t be safe. Actually, I wouldn’t put, if I had a dog, I wouldn’t even put a dog. I, one of their homes, to be honest with you.
Diane Carbo: See that’s an important point to make because there are hospice units, not in those that would be able to handle things like terminal agitation with IV medications different from what he was taking and calm him. But, when they’re in the nursing home, you and I both know that the nursing home staff isn’t trained, they don’t do IVs well, if they do them at all. . And as well as the hospice nurses are supposed to be caring for the patients and in a hospice unit in the nursing home, that means that the nursing house staff is going to come in just to check maybe. There’s no full time hospice staff in the room.
Betsy Wurzel: Right. And my dad had a wonderful hospice. He was in a nursing facility, nursing home facility. And they were great with my dad. People think they have this impression, Diane, that, hospice is in your house, 24 7. That’s not the case. No one’s dying at home. You’re the one giving that morphine. You’re the one given that Adavan. But I would tell, I even told the hospital nurse, I said, Matt, is that the end of his life? And she said, no, he’s not. He’s walking, talking. I said, I’m telling you he’s at the end. Get your head out of the textbook and think outside the textbook. And two weeks later was gone. They didn’t believe that he was dying. And I really feel that a lot of education is needed with hospice and dealing with a younger, a person with Alzheimer’s. They may not be in bed. Agitated. It might hang around agitate
This needs really a lot of education. I feel desperate.
Diane Carbo: I think the benefits of hospice through Medicare need to change. They’re not going to, because there’s so many of us aging, we’re going to have fewer benefits. There are 90% of the unpaid caregivers out there are family members and they provide 90% of the home health in the country. Saving our government, billions and billions of dollars. They are the invisible healthcare workers. They’re untrained and they’re learning as they go along. It is frightening for them.
Betsy Wurzel: Yes. And the hospice doctor told me that they have to do whatever their protocol is before someone comes up to the hospice unit so that they get paid well, because home hospice screwed up and they know they screwed up with Matt and I called up Medicare and I complained. They took back their payments. They took back over $17,000 in payment. They wouldn’t submit and that’s medical records. Because they know they screwed up. They screwed up.
Diane Carbo: Then they make you feel like you’re the bad guy, because you have expectations of support education and some kind of care.
Betsy Wurzel: Yes. I told that social worker that came to my house. I had a meeting with her at the hospital and I told her, I said, you need to listen to the caregiver. And when we tell you, I would love one is agitated. You need to believe it when you’re dying and you need to believe it when they have pain, do you need to believe it? I said, I’m telling people, don’t take this crap. We will be speaking up. We’re not taking this anymore. You need to listen. We know our loved ones. And she goes Betsy, I did, she’s so sarcastic. She goes, I didn’t go to Starbucks. I was concerned. I said why didn’t they do anything? She goes, I don’t know.
Diane Carbo: I totally offends me. And of course, I’ve had multiple situations interactions with healthcare professionals on that same level, because we demand a certain quality of care. I just want support and kindness sometimes. And someone just to say, I understand how you feel. I acknowledge it. And I understand your frustration unless you work with me instead of.
Betsy Wurzel: They didn’t believe me then that was severely agitated. That would be a, Josh would have to Holton I changed him, but when he was agitated, Diane, John’s off of the box and start walking.
Diane Carbo: Yes. They don’t realize sometimes. Sometimes the medication that they’re prescribing is causing more agitation, not less, it’s called a paradoxal effect and they had the opposite reaction to a medication. That’s what makes me confused about why they didn’t try something else because if I’m a nurse and I’m hearing you say. He’s getting more agitated, not less with the medications I’ve given him. That’s a clear indication to me. Let’s get up and maybe try something else on him because obviously the medication we’re giving him is not working or it’s having that paradox or opposite effect and causing the agitation.
Betsy Wurzel: Yes. The last night I said that was home. I gave what they told me and he talked the whole night. He fell out of bed the next morning I called up the hospital. So I said, I did what you said, med talk the whole night. I have chest pains. I’m not sleeping. I’m exhausted. Are you going to come out and assess it? Diane, she said to me, I don’t know. I don’t know. I said I’ll tell you what. That’s me. I blow it. I was calm, but I said, you know what? I’m going to call you every minute and in between calling you, I’m calling up your director, your regional director, I’m calling at Medicare and placing a complaint because this is ridiculous. I said, he’s not my husband. That’s just some patient. My husband is my husband on his advocate and I will fight for him. You don’t even know who you’re dealing with. And she said, cool. I’ll make those calls. Mrs. Sloan. That’s my married name. She goes, I’ll make those calls. I pull up my nurse managers. It should not have taken so much stress and aggravation for me to get my husband to help that he should have had and so I feel that more than he should have. And after he was there for two days, they had someone to sit with him, Diane, and they had the nerve to say to me, oh, Betsy, now we see what you’re talking about. Why do you think, why make it up? Why would I make it up? Yeah. It just got me. Yeah.
Diane Carbo: You know what I have to tell you my son that’s past Jeff. He used to call me the dime monster and Diana and a monster because I am blue. I’m a mama bear. Yes. I have advocated for my dad, for my my son. Even my younger son when he was young and a baby and had ear infections all the time. Doctors will look at me and tell me, I didn’t know what I was talking about and I would bring them in and they’d go, oh, yes, you’re right. It just makes me crazy. If there’s anything I’ve got to tell caregivers to do is Have an advocate there. If you don’t have the energy elder care manager, have one of us be your caregiver coach to support you. There’s even a growing deaf movement in the country. And they, there are death doulas. Now that will be there and work with you throughout the entire death and dying process. In fact, we have a certified death doula on our staff right now, our teams. And I have pat Deegan is one of my end of life consultants and she worked in hospice for years and we are in fact, next week, we’re talking about the active dying process and the signs and symptoms that you’re going to see. Because people don’t know, they really don’t know and they get frightened and scared.
Betsy Wurzel: Yes. The more education, the better I wish I had a death doula. I don’t think there was any or any in my area.
Diane Carbo: Not many of them, there’s not many around it’s a new and up and coming field, but you know what, it’s going to be a necessary field because we as a country have the hospital system is all about making money. And one of the things is we have palliative care and hospice are one of the most underutilized programs that we have and it’s because doctors stopped getting paid from seeing the patient. So I firmly believe, and as a nurse for 50 years, I strongly feel it’s greed. The doctor’s part as far as not wanting to give up that little bit of income for them. Visit Medicare and the other thing is they see it as a failure and there is nothing pleasant or wonderful about being in a hospital and dying, you want to be surrounded by your loved ones at home, and you want to do it in a peaceful way. You hope, but the medical delivery system lets people down. And here’s a perfect example of that experience.
Betsy Wurzel: Yeah. Yeah. Thank you. I wanted Matt to die peaceful at home that wasn’t how it worked out and I think this might sound weird, but I think Matt died in a hospital because I think he knew Josh couldn’t handle him dying at home. My son has special needs and I think it would have really flipped Josh out if Matt died at home. I could understand Matt going out to hospice unit. I knew he went up there to die and Josh and I knew that I told Josh that those idiots can’t think of another word. So as he went up there to get a medication adjustment, I knew he was dying and that’s the thing. The hospice chaplain had the nerve to argue with them. Imagine crazy Chaplin came into my road. She was supposed to come to my house and the two times she’s supposed to come, never showed up and so she came to my room to meet me and I, yeah, I was upset that match suffered more than he should and she said the nerve to say to me he’s not suffering now. Of course just got shot off with morphine and Adavan, but he did suffer with me and then I was upset because they called me over this Christmas Eve day that he would be going home later that week. And I said, no, he’s not. She goes don’t worry about that. Just worry about today that might be coming home. I said, I don’t think so. There’s no way he’s going home. I rescue since this church the way he is now, she goes, you can’t do that. Yes, I can.
And I went into the director cause I already went in and gave her an air full. Two days prior and told her, I didn’t think the care is acceptable and unacceptable. And I told her, I said, Carmel F not should go home, which I know he won’t be. I said, so help me. I went in his care plan that a nurse has to come out when I say so, because if a nurse doesn’t come out, my next call is to your CEO and don’t think I won’t do it because I will. You have no idea who you’re dealing with.
Diane Carbo: I will. I will tell you an old Jewish dear, less, the norm was a friend of mine and he used to tell me, Diane, why go to the ass when you can go to the head? And I will tell you. I do it all the time. I have no problem saying, look, you don’t get paid enough to deal with me and my aggravation and my complaints. I want somebody who could make a decision and I just worked my way up the chain. Oh, I have gone to the CEOs of major hospitals. Hell, I went off. With the military because of what my son went through. I’m fearless. What can they do to me? Because they’re doing so much harm and pain to our family members. I feel bad is I had the strength and the energy. I don’t know how you did because you were caregiving and, that’s exhausting in itself and I know that caregivers take the word. If somebody says to you, they’re sending you, your family member home, you go, oh, okay. And you’re thinking, they’re not thinking, do I have rights? Do I have options? . None of that is expressed to them and we have to have the energy to fight that and if you don’t, then you need to have someone help you fight that somehow some way, because you should not be doing this. No caregiver should be doing this alone.
Betsy Wurzel: That’s right. And I tell people in my group kick all the timers outs movement hire someone as you can afford it, hire I wish I did because it was so stressful. And aggravating and, after Matt died, I beat myself up for a year. Cause I had, and a lot of caregivers do have guilt, even though we did everything that we could, but I finally had an epiphany then that, it’s let it go, Betsy, I’m not suffering. I’m not thinking about it. And yeah I went to the patient advocate. I went to the director of hospice. I called that my husband’s primary doctor who said he was going to call it the director of hospice. And they must have known because when my son went to the doctor’s office, she said, yeah, we heard about what happened to your husband. We you heard about it. So the doctor must, they must have talked to mine themselves.
Diane Carbo: But, you know what, as far as I’m concerned, it’s the good old boy network. Oh yeah. We heard they had a problem, because I’ll tell you what I did sales and marketing for hospice . The medical director gets paid a nice chunk of change to represent that hospice. And he goes around. In the good old boy network, along with the marketing person to generate business, to come to his hospice and nurses that are marketers are getting bonuses based on how many patients they get referred to them. I know the system very well from that end because I’ve done it. I’ve lived it. I can tell you that I worked for a hospice and I left because I saw some unethical and things going on that I didn’t think were good. And I couldn’t represent them. So I can tell you, I know that it exists, I think that one of the things we have to learn is. I think everybody needs to know that palliative care is the bridge before hospice it’s underutilized. And if you have a company that is offering palliative care, look into that first, and if they provide crappy care, Look for another one that gives you a little bit more buying you more time, but if you’re stuck, I’m with you, hire an elder care geriatric care manager, hire one of us as a caregiver coach whatever capacity you can afford you and you need support and help, then you need to reach out because you should not be doing it alone.
Betsy Wurzel: That’s right. And I always tell people dying and we’re nurses, we go that word gut. You have to trust your gut instinct as a caregiver. You have to speak when there’s an injustice. If we don’t speak up, nothing will change. My mom would say to me last year, stop talking about it. It’s not bringing that back. I said, I’m not talking about it to bring that back, but what about the next person? I’m not thinking of myself next person, cause nobody should ever be treated the way we were. You just don’t disrespect people like that.
Diane Carbo: That is the problem in our healthcare delivery system is there is no respect for the family members anymore and especially the caregivers are totally invisible to our healthcare delivery system. They worry about the patient coming in, but I don’t ever hear any doctor ask. Hey, how are you as the caregiver? Is there anything we can do to help you? I’ve said this multiple times. This may be the first you’re going to hear it from me, but I think disease specific organization. Like Parkinson’s, Alzheimer’s diabetes, cancer. They’re all about raising all kinds of tons of money, tons and tons. Billions of dollars for a cure. Okay. I get that. But we’ve been waiting for a cure for all these diseases for a long time, and they ignore the benefits that developing programs to address the hearing now for the caregivers, there’s such a limit, there’s such a little bit of respite care available. There’s such a little bit of things available. If all these organizations would put a ton of their money in to one big group, they could help the family caregivers get the support they need. Still be able to save for the cure, but that’s just, that’s my personal opinion.
Betsy Wurzel: No, that’s true. Diane, I have to say this. I just interviewed someone who wrote a book about the history of the cancer survivorship movement. And I was thinking well Alzheimer’s and whatever dementia needs that we, the caregivers or the survivor. People got together who had cancer and said, you know why we’ve had enough, we’re tired of being discriminated against. We want to be a better treatment. We want to be treated better. So this is how the new oncology nursing came about and new treatments and of support groups because people got together and said they had enough, and this is what caregivers need to do, but we’re too tired and exhausted.
Diane Carbo: Exactly. There has to be, a movement that is private. It’s private. It can’t be have the government involved because the government just screws things up. I firmly believe they do. Medicare is a perfect example of that. I think there’s gotta be a way that people can raise money to help. Lots of caregivers get that time off that they need and support them because especially at times even at the end of life it’s necessary. I’m so glad that we had this conversation today, because I think that people need to understand that they’re not alone out there and we are there to help and support them. And we have the to help you get through this time in your life. And we’re hoping that over time we can affect it. Totally changed, but have you helped other caregivers after your caregiving journey is over to continue the movement that we’re starting to get care for the caregiver?
Betsy Wurzel: Yes. Yes. I always enjoy talking to you. Diane we’re kindred spirits. We’re where are you a warrior? Yeah we have to speak up. Definitely.
Diane Carbo: I just wanted to make you aware that there is a movement out there that anesthesia may be involved at the end of life. They’re looking more and more into that. And They also looking at psychedelic medication like LSD . They’re saying that some of those can help a person. The color at the end of their life. So there is a movement. Now you think it’s going to happen if the government’s involved with it? No. No, but I think that private clinics will be offering that for people like Matt.
Yeah.
Betsy Wurzel: I think that they need to come up with something for someone with a dying brain because the Seroquel and there, for a psychiatric issues, not someone with a dying brain. And who’s to say that someone with a dying brain doesn’t have pain. This is what people in the medical profession need to realize and the social worker has no right to tell anyone that they don’t really have pain. Their jurisdiction for lack of better words out of their scope of practice.
Diane Carbo: Exactly. Yes. It’s out of their scope of practice. And I will tell you right now, the family members are the experts with their family member and nobody ever questioned what the family member is saying. They should acknowledge it and work with them to find a solution.
Betsy Wurzel: Yes. Absolutely. Yeah, we definitely have caregivers need to speak up. Unfortunately, she’s 91, she’s 90 taking my brother to a neurologist too. It was very ignorant when it came to dementia and, she said, I can’t fight like you Betsy and I was like, give me the phone. Give me the phone, but she wouldn’t do, I’m an embarrassment to my family.
Diane Carbo: Oh, you know what? I’m the bossy. No, it all sisters. So I get it. You know what? I don’t care anymore. When I went on behind you, I’m behind you. And I know what’s right and what’s wrong and what’s acceptable and what’s not. And I will fight all every step of the way. I have to, because there’s others behind you that will have the same experience. If we don’t do force and effect change.
Betsy Wurzel: That’s right. I would say to I told my mother, I said, you know what? You want someone like me on your side? You do not want to cross somebody like, yeah.
Diane Carbo: Exactly. Exactly. On that note. Betsy, I’m going to say thank you again. I love having you every time we’re together and to my caregivers out there. Remember you are the most important part of the caregiving equation without you. It all falls apart. Learn to be gentle with yourself. Practice self-care every day, because you were worth it again Betsy. Thank you. And until next time.
Betsy Wurzel: Take care. Thank you, Diane. You too. Bye.
Conclusion:
As caregivers, it's crucial to trust your instincts, advocate for your loved ones, and seek support when needed. Betsy and Diane remind us that caregivers play a pivotal role in ensuring the best possible care for those with dementia. By sharing their stories and knowledge, they encourage us to stand up, speak out, and work towards improving the caregiving experience for all.
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