Join two nurses and care giver coaches as we discuss medications. Learn how to advocate for your family member. We no longer have the local pharmacy and pharmacist to rely on. Medicare has changed how we get our medications. We now must advocate and educate ourselves. Let us help you.
Diane Carbo: Hi, this is Diane Carbo with caregiver relief and today I have Betsy Wurzel with me. She is a dementia care specialist, a caregiver coach
she is also a podcast host for chatting with Betsy. So Betsy, I’m really excited to have you here with me today.
Betsy Wurzel: Oh, thank you, Diane I’m also excited to talk to you about things related to caregiving. That’s where my heart is.
Diane Carbo: It is mine as well. We’re both nurses by profession in our past lives. So we’ve been caregivers our whole life. We both now support caregivers all over the country and actually all over the world with our information. What are you going to talk about today?
Betsy Wurzel: I’d like to talk today, Diane, about medication.
Diane Carbo: Great!
Betsy Wurzel: Especially now that it’s summertime, it’s very important not to have your loved one out in the heat,. Especially as you live in a very warm climate and be out in the sun . The public, usually isn’t informed about this. Medications against a seizure ,you’re Anti psychotic drugs to be out in the sun is very risky. You can get dehydrated. , dehydration. Isn’t good for our loved ones. You have to make sure your loved ones are drinking fluids. But not had them out in the heat the day, because they can cause probelms. They get hot and overheated very rapidly and they could get sun poisoning.
Diane Carbo: Yes. As we get older, we don’t feel the heat like we we did when we were younger. So that’s another issue . So we don’t know that it’s happening.
Betsy Wurzel: Because a lot of times I know my grandmother, when I think of her she was always called. Oh, it’s cold. It could be freezing outside. I live in New Jersey. It could be freezing outside in the winter time, but in her apartment, it was like The Bahamas 90 degrees. Say, grandma, aren’t you hot? I was dying in there.
Diane Carbo: I’ve worked in nursing homes and assisted livings. I can’t tell you how many times I remember this one, nursing home in Philadelphia, where they only had air conditioning in their rooms . The outside halls and the nurses stations didn’t have an air. We struggled because the staff was dying. The rooms weren’t any cooler because the patients would want to be warm. They were okay with the 80 degree temperatures. On another hand, I remember walking into a resident’s room and his roommate had to have the air on for breathing purposes. This cute little man. In his nineties. Had his winter coat on and his hood up. This was in the middle of summer.
Betsy Wurzel: So that’s it. It makes you laugh. I worked in a state facility for this severely disabled and they would put the heat on in October. Whether they needed it or no. Now here it’s still one in the program and the client, we call them clients would be sweating so bad that their dressings were coming off. And they’re high risk for seizures. So I called up the Maine’s department and I said, listen, you need to fix the heat, or you’re going to be sending these clients out to the hospital. Cause they’re going to be having seizures. And I meant it. I’m not kidding. So they came up and fixed it cause I have a big mouth. I said, unless you want to be sending these clients out to the hospital because they’re going to be having seizures. It was awful,. But also that whenever someone is put on a medication, I love it , you have to be your own advocate and your loved ones to advocate. Look up the medication, be informed about it. And ifyou see any side effects then call the doctor immediately. Don’t feel intimidated. Don’t feel that you are asking something that you think might be stupid. It’s not. It’s better to be safe than , because you have to speak out.
Diane Carbo: Oh, absolutely. One of the things that I encourage my clients to do is make sure that they go over and review medications yearly with their doctor. Ask specifically, do I still need this medication? And if I do, can I take less of it? What can we wean off? I can tell you now, when I used to pass meds in the nursing homes, I have to tell you. People were taking 20, 30 pills a day, sometimes 40 pills a day. I think sometimes there’s a lack of communication between specialists and doctors, the PCP, in regards to medications. Things get added on. Nothing gets subtracted. Which makes it really hard because our aging bodies don’t detox medications like we did when we were younger.
Betsy Wurzel: That’s very important, Diane,. I’m glad you brought that up because I had interviewed on my show clinical pharmacist. With the way insurance companies are now, a lot of people don’t go to their pharmacist that they know. It’s through a mail order that, some people have to do for insurance purposes. I’ll tell you that a good pharmacist. That’s on the ball, is worth your weight in gold. I go I won’t mention the chain, but I go to a pharmacist who my husband just loved. Harry, and one day I came with the medication. I can’t remember the name of it. My husband had early onset Alzheimer’s. Harry said to me, Betsy, you don’t want to put Matt on this yet. He doesn’t need it. He’s going to be zonked out. He recommended an over the counter. I think it was a amino acid and she said, try this. I’m glad I listened to him because Matt would have been zonked out. And he didn’t need to be. He was still in the early, very early stages.
Diane Carbo: You bring up a good point. We know our family members better than , the doctors. A lot of us don’t want loved ones to be zonked out. We take a prescription from the doctor as if it’s gold. We don’t ask the right questions . I know people are also pharmacy hopping when they get a new script, if their Medicare plan D doesn’t cover the medication. They look for different pharmacies to get the best deal. Which is absolutely what they should be doing. Again, it’s not having that conversation. The pharmacist that can see the whole picture. That’s a really sad part of what’s going on in our society right now. Our healthcare system is breaking down because we don’t have the luxury of developing that relationship with our pharmacist. And I will tell you a good pharmacist is priceless as you were saying,
Betsy Wurzel: Definitely and Diane. I would have told people go to their physician, they think, oh, okay. This medication is going to work. And hopefully it does. But you have to realize that medication is trial and error. Everyone reacts differently. Especially when it comes to anAlzheimers individual or someone with any dementia. Especially when they start hallucinating and they are aggressive. Medication is such afine line of what to give. You don’t want them zonked out. You don’t want them agressiveand. I found it very difficult to maintain that balance. Yeah, it is definitely trial and error.
Diane Carbo: I want people to know that Lewy body dementia is the second, most common type of dementia. It’s also the one that’s the most misdiagnosed. A lot of the medications given to patients for their behaviors a person with Lewy body, may have an absolute opposite response to that medication. It shocks people like something that’s supposed to call them because they’re agitated only makes them more agitated. People need to be aware that, just because the medication is given to them, as you were saying, you can have a response, that is totally opposite of what you’re anticipating.
Betsy Wurzel: Yes and this is why as caregivers, you have no other choice, but to speak up. When my husband was in hospice, they were giving him the medications for his agitation and they weren’t working. And I kept calling up. And I was told, I called too much. When you reach a solution to the problem, then I’ll stop calling. Matt was going through at the time was he was, he had terminal agitation. But he didn’t fit the textbook picture of what a terminal agitation person looks like. So the medication wasn’t working and I kept telling him, I said, you’re giving more of the same. It’s not working. That’s insanity. Find something that works.. Matt was on the the generic name for Exelon. I can’t pronounce, it I was leery about it being increased. I said, okay, Matt, do you want to try it? And he was in the early stage. And so he, he knew, what he was doing and she said, okay. So I said about how, how’s it going and go on? And he goes, okay. Then one day, this is when he was able to work by himself outside. He said, he felt like he was drunk. And he said, Thankfully, he wasn’t hurt. I called the neurologist. Cause I had looked at the medication I know could cause problems with balance and I said, can you put Matt on his dose he had a problem. He can’t tolerate the increase. The state was his balance. He felt like he was drunk and the doctor said, oh no, that can’t be. And I said, yes, they can be, look it up in my research. So you have to be an informed consumer now. With these medications, I know my stuff and your body extremely sensitive to medication, very sensitive. I know my body, and doctors don’t believe me. They need to start believing the patient. When a patient says, I have a problem with this medication. And you’re talking about older patients than a lot of the medications. My mom ended up in the hospital. Because something was wrong with her potassium. I don’t remember if it was up too high or too low because of medications she was taking
so doctors really need to coordinate, or the pharmacist. If you go to a local pharmacy,. They on the ball or the mail order pharmacies. tha people are forced to go to, they need to be on the ball
Diane Carbo: And they’re not, you know what, there’s this people that are see a form. They count the pills out. They put it in the bottle and they move on. I can tell you a perfect example is my son, when he was with the VA He has since passed, but when he was at the VA he was in and out of the hospital several times. Over a period of months in their behavioral health unit. Each and every time he went into the hospital, they gave him a whole truckload of medications. I can’t believe it. He would be in for a week or two. Go home for a few days. Go in for whatever, and come back out again . They filled those scripts every single time. The medications, they put him on made him like a zombie. He ended up, he did complete suicide. The thing is the pharmacist should have never refilled those medications every single time. The ball was dropped there. They even let him drive home under the influence of medications that’s clearly say, do not drive. People don’t understand that the people that are filling these medications in these group settings of some sort the mail order or whatever, really aren’t following up the way they should. They just aren’t and they’re not in tune to you and your condition. I miss the local small pharmacy where you knew the pharmacist. They knew who you were when you walked in the door and they talked to you. And spoke to you about conditions. So I understand what you’re saying about that. I really do.
Betsy Wurzel: Thankfully I can still go the pharmacist because we were doing mail order for a while and I went in to get a affidavit and he saw, I haven’t seen you in a while. So you moved. And I said, no, we had to do mail order. He goes, I will give you the pills at the price you’re paying. So you will find a pharmacist that can work with you that will take, will accept the payment because he was a fantastic all of the pharmacists in that store, or, they know your name. It’s like the show, cheers. They know everyone who comes in. They know all their customers. You brought out a good point, Diane. And I’m very sorry about your son. And I know someone else who’s child to commit suicide. They were on an antidepressant. Those drugs have side effects. Those medications, they say that they could cause suicidal thoughts. Which is bizarre because you’re taking it because you’re depressed . Then it could cause this condition. So they have to be monitored people. Even though being monitored, It’s still could happen. They get a side effect. I know Diane, a lot of times the doctor or a nurse practitioner might say to the patient or the caregiver. Oh no, it cant be no, that’s not right. If you feel that’s not the appropriate answer to you. Then you need to as to speak to the manager, the doctor or doctors because ,you and your loved one’s health is the most important. It’s the most important matter.
Diane Carbo: One of the things I tell my clients is that you are employing that doctor. You are his employer. You are paying him for his services. So get the most for your money. Don’t be afraid to ask questions. That’s what you’re paying him for his knowledge if people would look at it from that perspective oh my gosh, I’m paying you to provide me with a service. Provide me with information. That would be so much better than to say, oh you know what you’re doing? I trust you. Because that gets you into trouble.
Betsy Wurzel: Yes. Oh, Diane. I love that. That’s true. I’m of the age. Okay. I’m 63. My momGod bless her she’s 91, I grew up where you didn’t question the doctor. My mother definitely did not question authority at all. You did what you were told. Without question. So she does not question. You have to question and the doctor gets annoyed because you’re asking questions. Then it’s time to change doctors.
Diane Carbo: I am in a hundred percent agreement. . If your doctor or your nurse practitioner is not going to listen to you and hear you out. Respond to you and take time to answer those questions, or they intimidate you by bullying you, when you do ask . , it’s time to find a different doctor.
Betsy Wurzel: Absolutely and hindsight’s always 20, 20, and on another show, I’m going to talk about navigating to hire someone , you navigate the hospice . , which I wish I did .Because for any medical professional or a social worker to tell you that your loved one is not in pain or that you are doing it wrong. Then you need to find a different hospice
Diane Carbo: Betsy, you’re talking to somebody who took on the U S military medical delivery system. went all the way up to the surgeon General’s office. I called them, my son, Jeff called me the Di monster. He said, you’re in the Dimonster,mode. , Because I had five star generals rainy down on Madigan army medical center because of this substandard care. When he was an active military, it just got worse in the VA. I’m not afraid to stand up to anybody when it comes to my loved ones or myself for my care.
Betsy Wurzel: That’s right. I’m more of a five foot spit fire a mama bear. I actually had people coming into Matt’s hospice room. Because he had to go out to the hospital hospice unit to see who I think they went to, came in to see what the big mouth was. Because I know I caught the tsunami and that hospital. You just do not disrespect me or my loved ones, especially my loved ones. I am a mama bear. When you have a loved one who can’t speak up for themselves, We don’t have a choice, my child, Josh , the child, I still think of it that way. He’s going to be 37 next month. He has special needs. I learned if I didn’t speak up for my son, no one else was going to, if I didn’t speak up for what he needed , no one else was going to. I had my back against the wall. I’d come out, fighting I had no choice. So that prepared me for taking care of Matt.
Diane Carbo: I learned very early in life. My son, Casey, who is now, he just turned 42 yesterday. When he was young, he’s a ginger and he had ear infection after ear infection. I can remember his first set of tubes they put in him. I came home. The next morning he had drainage coming out of his ears. , like stuff would come out of his nose. I called the doctor and said to him, Casey’s got this God awful stuff coming out. And he said, that can’t be, this is not true. And I’m like, are you kidding? First of all, I’m an RN. I have good assessment skills. It doesn’t take rocket science to see there’s snot coming out of my I can’t tell you that over the years. He had ear infection after ear infection. He had seven sets of tubes put in and there was always complications it was just his body. The doctors would always make me bring them in. Until they got to realize that I knew what I was talking about. And yes, they couldn’t believe it because they had just seen him the day before. He was perfectly fine. That this had happened. So I’ve learned, when doctors questioned me, I just look them right in the eye. I don’t care anymore. No, this is what’s happening with my loved one or with me, and you need to address it.
Betsy Wurzel: Absolutely. I had a doctor told me because I was fibromyalgia and I can’t take muscle or a whole pill. I take a quarter of one and it does zonks me out and I couldn’t be zonked out on that. I had Matt to take care of. I have a son, I have a household to run and I work. So I said to her, a quarter of a pill knocks me out. She goes, they can’t, you’re just being non-compliant. And I said, no, I’m not. It’s not that I’m non-compliant. whatever you learned in pharmacology, when it comes to me, Throw it away because I’m not your typical person. I’m very sensitive and it doesn’t take me much. Physicians, nurse practitioners have to understand, it’s not that a person is being non-compliant. It’s that maybe they can’t tolerate the dosage. They need to believe that patient. They also need to believe the patient, or the caregiver, when they say there’s side effects that are happening. They need to believe it and address it .And not stuff it off and not tell them. No, it can’t be because yes, it can be. And this is what has to be addressed. Sometimes we have to educate the doctors
Diane Carbo: Absolutely. I’ve had a recent experience where I have chronic pain. It’s my years of nursing. . So I have chronic pain, but I’m also having some neuropathy due to arthritis in my hands and my feet. So they put me on Gabapentin.. But Gabapentin, they put you on 300 milligrams twice a day to start. I just turned 68. The first time I took it. I got up after a few hours and I had such terrible balance issues. I can’t even believe it. I had the argument too, oh Nope. That can’t be but it was, so now I trying to adjust to a hundred milligrams or 200 milligrams just at night. Cause I can’t take it during the day. But now I’m having vision problems. I’ve just started having vision problems. And I think it’s due to that medication. So I’m going to have to stop taking a medication that helps my pain and try something else .Because the side effects . They’re going to tell me, oh, that’s not possible. That’s not possible, at this low dose. Yeah, it must be because I just had my eyes checked six months ago. Got my very first set of prescription glasses. They were working. And after I started back on this medication again, my vision is not right. So it has to be the Gabapentin at hundred or 200 milligrams a day at night. To take at night to leave my alleviate my pain. So you’re right. You know what? We have to stand up for ourselves. I think one of the hardest things and you’ve lived this, I’ve seen it as well. Is the dementia patient where they can’t tell us what their side effects are.
Betsy Wurzel: That’s right. When they get into the advanced stages, you want to get that fine balance of then not being totally zonked out. Yet not being agitated .So when Matt starts to take those medications, his balance was off and he fell and hurt himself. He took something for his hallucinations and it caused him to be agitated. Then you have to take something for the agitation. And to me, it was like a vicious cycle. I’m going to say this to Diane, the medications that are given for people who have any kind of dementia. They are for people who have psychiatric issues. They are not for a dying brain. I hope medical science comes up with some kind of medication to treat a dying brain. Because this is what doctors and nurse practitioners don’t understand. It’s not going to work the same because the brain cells are dying . Doctors and nurses are listening, we love you. we have nothing against you. But you know what? Listen to us. Listen to the caregiver because these medications don’t work the same and they’re black box. They are black box for people that are 65 and older. Which is a warning. I said this to the neurologist, this is the black box . Oh there’s nothing else we could give him. That’s what’s available now.
Diane Carbo: I hear that all the time. I try to make my clients aware that of the beers criteria. Beers, as in the drink, beer. Beers criteria talks about the medications that you should avoid as you get older, something as simple as Benadryl. Here, I am another one that’s sensitive to things. Benadryl hypes me up versus calms me and makes me sleep. , it is something that people need to be aware of that yes even something as simple as Benadryl should not be given to somebody over the age of 65.
Betsy Wurzel: Wow. Interesting.
Diane Carbo: Yes and many people think now, if you don’t have a problem with it, it’s fine. What people don’t realize is that our bodies our liver, our kidneys, everything, as we get older it slows down and it doesn’t work as good as it used to. So we have a situation where things can build up in our bodies. And we’re excreting them or letting them out of our body at a slower rate. So it can build up over time causing us to have severe side effects that you normally wouldn’t see at very low rates. That’s why I tell people when they are put on a new medication, tell the doctor you want the absolute lowest dose possible, to start . then increase that over a period of time. So that you can see what is the best possible dosage for your body for you, at that time. So that you’re not having to take a higher dose. My Gabapentin is a perfect example. 300 milligrams twice a day would have had me crawling on the floor. I couldn’t function as a normal human being. Not that I’m ever normal. Fall risks are very serious as we get older. So when my balance is off because of a medication, it contributes to things that, if I fall, break a hip, have a head injury. I could be knocked out for hours and nobody may even know that I’ve had this issue. So I think people need to really be aware . Start out at the lowest possible dose that they think is deemed effective. Then increase it to see how you respond to a medication. Especially if you’re like you and I are, Betsy where, we are more sensitive to some medications than others.
Betsy Wurzel: And I’m not a big person, I’m a small person. So what might be good for, someone who’s bigger, the larger person will be way too much for me. And this is what doctors have to understand. You brought out a good point, Diane, as our bodies as we get older, they slow down. People who have dementia, considering their age or older, or if not. Matt was sixty six when he died. His body was slowing down . Your body does slow down, and with dementia as you were advancing and so the larger doses are too much. Then of course the patient is going to fall. Possibly stop to eat and this causes all kinds of problems.
Diane Carbo: People don’t realize that we’re taking more supplements than we’ve ever taken before. They think that because they’re natural, they won’t interfere with the medication. That’s not true. You have to make your doctor. That’s why I miss the local pharmacist. Your local doctor and your pharmacist, you show them, tell them I’m taking all these supplements. I’m drinking, this juice. Just those juices alone can interfere with some medications . There’s medications that potentiate or make other drugs act stronger because of the interaction with them. A perfect example is you could take something like ativan or Xanax, which has given to so many of our clients. Then they want something for pain. Because they have pain. That pain pill work stronger because of the Xanax or the ativan that they’ve taken. It affects them differently. So they may not need as much of a pain medication. That’s not for us to judge. That’s just a fact of life. The other thing I want people to understand is you can’t start and stop drugs. Especially dementia drugs. Because you lose the effectiveness. So many people say, oh, I didn’t see the response that I wanted or it would got too expensive. I’ll start it up again. When my donut hole is over. So they take a lesser dose. Then they find out, over time that the regular dose that was ordered or the drugs that they stopped and started, is not working anymore. That’s important for people to understand that you can’t start and stop drugs, and think that they’re going to have the same effect as they did in the past.
Betsy Wurzel: That’s very true . So this is going to sound like a broken record. It’s just trial and error. There’s no magic formula. A doctor or nurse practitioner has no idea how someone’s going to react to medication. We are we’re souls don’t know until we see. So no when Matt started on Namenda, they started him on a high dose. And he got extremely constipated. And was getting more confused. I called up and I said, this is way too strong. And they put them on a lower dose and he stayed in that low dose. He couldn’t tolerate a high dose . When you give medications that cause horrible side effects. I could only speak for myself. As a caregiver, I still have guilt for that, Diane. I beat myself up for a year about that until I had to let it go because I felt so bad given that those medications that I felt. , I knew he was dying, .But I just thought that just made him worse in a way and it’s very hard. It’s very difficult for caregivers. I’m going to speak about this. I know there are some really with hospice because people think that hospice is there 24 7 in your house. They’re not. You’re the one giving that medication. And that’s a hard pill to swallow. No pun intended.
Diane Carbo: That’s why there’s a big growth of death doulas happening in this country. And I have somebody who is a death doula that will be speaking with me in regards to, they’re there to support the family throughout hospice. But we’ll talk about that at another time, I do want to say that you were talking about terminal agitation. We will address that on our hospice thing too. I just read an article that they’re looking to. When you’re talking about the dying brain, they’re looking to provide anesthesia at the end of life to help people that are in this terminal agitation. I don’t know if it’ll come through or if it will happen. But that’s an interesting topic because I think that so many people, it’s not like it’s on TV where, like you’re laying there and you’re calm and peaceful and everything’s well. Because it’s not. Medications can make a difference. But in your case, they just couldn’t find the right dose or the right medication. And werent willing to listen to you. So I’m hoping that in the future that this will be. Because baby boomers expect it. We’re going to change the way they perceive death and dying and the treatment with medications.
Betsy Wurzel: Yeah, absolutely, Diane new kids is like so many shows on that. Because it needs to be brought out, we’re afraid to talk about that dying and grieving yet. We need to, because everyone should play in their end of life and how they want it to look like. Do you mean that they would be getting like phenotol and those type of medications.
Diane Carbo: Absolutely.
Betsy Wurzel: That would be very helpful. Yeah, that definitely Matt, but so severely agitated that he went into hospice. And he was given IV medications. Super-duper strong medications and to maybe the fenytl, that they would given, it would have really, helped him more because it’s such a horrible disease . That’s why Diane will never shut up about Alzheimer’s. I just will not. Be silent until the day I drop or I can’t talk anymore. Whichever one comes first.
Diane Carbo: You know I feel that way about just caregiving, in .General not just with dementia patients. My son had a chronic pain condition. Reflex sympathetic dystrophy or are chronic regional pain, the syndrome. Those that suffer in chronic pain have no support from even the medical delivery system. The way they treat people, when they think they’re drug seeking. Is just appalling and it breaks my heart and I guess I’m appalled my son .Didn’t take medications, pain medications, because they put you on it then they take you off of it. And they put you through this system where they want you to live without it. And they put a stimulator in his back and I’ll never forget him telling me the story. This is a Cleveland clinic and they had a problem with the physician that put in his stimulator.
They cut the cords too short and it became dislodged in his body and they put him under, they didn’t give him anesthesia. They were trying to do it without, and he was wearing surgery because it was so painful for him. But long story short was he was swearing and the nurse, this is terrible cause I’m a nurse, but she told him she was offended by his language and he needed to control himself while he was under this amount of pain. I know and understand what the medical delivery system lets us down. We as individuals really need to stand up and be strong and not be hesitant to ask things. If you’re concerned or worried about a response to a medication. Don’t hesitate to speak up because it’s a matter of life and death. And my son situation. And I’ve seen this in other situations. So it led him to complete suicide in the future because he was constantly and utterly being traumatized and discounted. I think that’s really a sad commentary on our medical delivery system.
Betsy Wurzel: Yes. My heart goes out to Diane truly about your son and they need to address the healthcare system. That’s a whole nother show. The healthcare system is broken folks. I don’t have any answers. I wish I did. Even doctors will tell you it’s broken. It’s getting worse. As the population is aging, you’re going to see less people going into medical practice because of how screwed up it is because of the government of red tape and the insurance nonsense that they had to put up with. And they can’t practice the way they would like it.
Diane Carbo: The Medicare reimbursement system has totally destroyed our healthcare system to the point where what’s happening is, and people will have to have a conversation about this in the future Betsy, because we can both certainly bring things to light, but the medical delivery system has caused the Medicare reimbursement is so low that teaching hospitals are closing all over the country which is causing a doctor shortage because doctors can’t find places to specialize. So we already have a shortage of dermatologists and neurologist in this time and age in the next few years, we’re going to see shortages of all sorts of of specialists and we also have a situation where doctors don’t want to take Medicare so they’re moving to the concierge services, because they want people that have money that can afford to pay them a living wage. So there’s all that too,
On that note. I’m going to say Betsy, we have a lot to talk about as a future. Sure. Yes. I’m going to leave with my usual statement .To caregivers. Remember you are the most important part of the caregiving equation without you. It all falls apart. So please practice self-care every day. Be gentle with yourself because you were worth it. That’s the I’m looking forward to next time.
Betsy Wurzel: Yes. Thank you so much, Diane.
Diane Carbo: Okay, bye.