Wow, it's been a while since I've posted; sorry to those of you who do look at my little blog.
I just read this article, and I have to say I was a little peeved that I couldn't comment on it. A little background:
The article is written by a nurse, and she is talking about the trend of hospitals to seek customer satisfaction input and how now the Centers for Medicare and Medicaid Services (CMS) will be basing reimbursement on the same patient satisfaction indicators.
What I have to say in response is that I know the hospital is not a hotel. Some of you may know that my mom has been in the hospital, three different hospitals, actually, over the past 3 weeks. I can tell you without a doubt that my "customer satisfaction" as a daughter has changed sometimes by the minute. I can parse out the fact that my mother feels lousy, and some of the things they have to do make her feel even worse in the short term.
What I know is that the way each procedure, whether it's walking in physical therapy or inserting a PICC line is enhanced or made worse by the attitude of the medical professional. I have witnessed some truly awful nursing and doctoring, and let me tell you, when it's your mother, there is no satisfaction. And sometimes five minutes later someone with more care and compassion comes in and satisfaction goes up.
Having worked in hospitals, where I had to give people those satisfaction surveys, the hope is that people had more of the good experiences. The author of the New York Times editorial thinks that the person who gets the bad news that they have terminal cancer will somehow be less satisfied with the hospital.
My position is that the person who gets that bad news is going to be influenced positively or negatively by the way they were told. I have seen people get horrible news, but news that is delivered with care and compassion. The same people go on to report a positive hospital experience, because the doctor and nurses and social workers took the time to deliver the news in a humane and compassionate manner. Let that be the standard.
Thursday, March 15, 2012
Wednesday, August 31, 2011
Tell Me That Story
I had the pleasure of being a guest at a support group last night at a local assisted living community here in Fort Worth. I was the guest speaker, and I did a brief presentation on elderspeak, the topic of the last blog post.
We had a good discussion, but as most good discussions do, it took a turn, and we ended up talking about other things. One of the people in the group brought up an issue with her mother who has dementia. It seems that her mother keeps talking about "going home".
Going home can mean different things to people with dementia, and it can mean different things at different stages of dementia. In this case, this lady wants to go home to the state where she spent most of her life. Her daughter reported that she was considering taking her mom on the trip home, but was worried that the trip would be hard, because her mom is frail and in poor health. Before I could say anything, one of the other group members exclaimed "You can't take her home, that wouldn't be safe! Besides, you'd be doing it for yourself, not for her."
Good points, and certainly more meaningful coming from the other group member, who is dealing with similar issues. But what I was able to contribute to this person is the idea of redirecting her mother. It seems that her mother equates "home" with a time in her life when she was younger, healthier, and happier. I suggested that the daughter might want to talk to her mom about not being able to go home now, but let's talk about home. The daughter can ask her mom to tell her stories about home, and they can look through family photos of home they can reminisce about those happier times. The daughter can validate her mother's feelings that home was a happy place full of good memories. As mom begins to forget those longer term memories, things can shift, and the daughter can tell the stories.
Validating and redirecting is not hard to do, but it does take patience and empathy. When you think how scary it must be to not remember people or places, it can be a comfort when someone takes the time to listen to the stories you do remember, and who cares enough to remind you of the things you've forgotten.
We had a good discussion, but as most good discussions do, it took a turn, and we ended up talking about other things. One of the people in the group brought up an issue with her mother who has dementia. It seems that her mother keeps talking about "going home".
Going home can mean different things to people with dementia, and it can mean different things at different stages of dementia. In this case, this lady wants to go home to the state where she spent most of her life. Her daughter reported that she was considering taking her mom on the trip home, but was worried that the trip would be hard, because her mom is frail and in poor health. Before I could say anything, one of the other group members exclaimed "You can't take her home, that wouldn't be safe! Besides, you'd be doing it for yourself, not for her."
Good points, and certainly more meaningful coming from the other group member, who is dealing with similar issues. But what I was able to contribute to this person is the idea of redirecting her mother. It seems that her mother equates "home" with a time in her life when she was younger, healthier, and happier. I suggested that the daughter might want to talk to her mom about not being able to go home now, but let's talk about home. The daughter can ask her mom to tell her stories about home, and they can look through family photos of home they can reminisce about those happier times. The daughter can validate her mother's feelings that home was a happy place full of good memories. As mom begins to forget those longer term memories, things can shift, and the daughter can tell the stories.
Validating and redirecting is not hard to do, but it does take patience and empathy. When you think how scary it must be to not remember people or places, it can be a comfort when someone takes the time to listen to the stories you do remember, and who cares enough to remind you of the things you've forgotten.
Sunday, June 12, 2011
Hey, Honey, How are We Doing Today?
I know I've written about the topic of elderspeak before, but I think it's worth coming back to. For those of you who aren't familiar with the term, elderspeak is a way of speaking that many use when talking to older adults, especially older adults with dementia. Some characteristics include simple words, short sentences, using a high-pitched sing-song voice, the use of inappropriate endearments, and the use of "we", and it's not the royal "we". If you're having a hard time understanding what elderspeak sounds like, think about the way most of us talk to infants or pets.
Negative reactions to elderspeak include pushing, pulling, refusing to do tasks, grabbing at people or objects, screaming and yelling or crying. In research studies I've seen, people exhibit these behaviors at much higher rates in response to elderspeak when compared with silence, or interacting in a normal fashion.
Sadly, the message about elderspeak is one that a lot of people just aren't interested in. I was recently asked to do an in-service on the topic at an assisted living community. You would think that the people working directly with residents with dementia would want to learn any tips that might make their jobs easier, but you would think wrong. I had a pretty bored and uninterested audience, and no one owned up to feeling offended if someone talked to them like they were 5 months old.
Negative reactions to elderspeak include pushing, pulling, refusing to do tasks, grabbing at people or objects, screaming and yelling or crying. In research studies I've seen, people exhibit these behaviors at much higher rates in response to elderspeak when compared with silence, or interacting in a normal fashion.
Sadly, the message about elderspeak is one that a lot of people just aren't interested in. I was recently asked to do an in-service on the topic at an assisted living community. You would think that the people working directly with residents with dementia would want to learn any tips that might make their jobs easier, but you would think wrong. I had a pretty bored and uninterested audience, and no one owned up to feeling offended if someone talked to them like they were 5 months old.
Monday, April 25, 2011
There Ought To Be a Holiday
I may have mentioned that I'm teaching a social work class on aging at UTA again this semester, and I've been thinking about tonight's lecture all week. The topic is caregiving. I don't know that I have much new to say about caregivers:
It's a hard job. You have to take care of yourself. If you get sick, you're no good to the care receiver. Take time for yourself.
As professionals, we all know what to say, and most caregivers have heard it over and over and over.
But here's a new message, something we don't talk about as much: If you know a caregiver, be intentional and do something FOR them.
Sometimes what that caregiver needs is a phone call, so they know someone is thinking about them. Sometimes that caregiver needs someone to come clean the house, without having to ask for it. Sometimes the caregiver needs someone to come take care of the care receiver for 2 hours so they can go shop without worrying. And what I know about so many caregivers is that they have a very difficult time asking for help. They feel like they are failing if they admit that they can't do it all.
So I challenge everyone who knows a caregiver to declare Caregiver's Day. It doesn't have to be to today, but it could be once a week or once a month. Do something for that caregiver to let them know they are not forgotten and they are not alone.
It's a hard job. You have to take care of yourself. If you get sick, you're no good to the care receiver. Take time for yourself.
As professionals, we all know what to say, and most caregivers have heard it over and over and over.
But here's a new message, something we don't talk about as much: If you know a caregiver, be intentional and do something FOR them.
Sometimes what that caregiver needs is a phone call, so they know someone is thinking about them. Sometimes that caregiver needs someone to come clean the house, without having to ask for it. Sometimes the caregiver needs someone to come take care of the care receiver for 2 hours so they can go shop without worrying. And what I know about so many caregivers is that they have a very difficult time asking for help. They feel like they are failing if they admit that they can't do it all.
So I challenge everyone who knows a caregiver to declare Caregiver's Day. It doesn't have to be to today, but it could be once a week or once a month. Do something for that caregiver to let them know they are not forgotten and they are not alone.
Wednesday, April 20, 2011
New Guidelines for Alzheimer's
It was reported yesterday that there are new guidelines for Alzheimer's disease. The first article I read was in the New York Times, and I wrote about the guidelines on Katten & Benson's blog.
The most important part of the story, however, is lost in a short paragraph in the middle of the story. It was reported that Congress has introduced a bill that will create specific cost codes for Alzheimer's disease for Medicare. These codes would allow doctors to be paid for having discussions with family members and caregivers. This is significant, because as the article states, "keeping family members well-informed can result in better planning and care."
It is amazing to me that it has taken this long for this to be recognized. In the social work class I teach, we talked last week about setting goals. Professionals are really good at setting goals--our goals. We often forget that we need to be setting goals that are consistent with what our client/patient wants. This becomes difficult with that person with dementia, especially when they want to stay at home alone, when clearly that is no longer an option. I told my students that when working with dementia clients, the "client" at some point changes from the person with dementia, to the family/caregiver. At that point, we must then revise the goals. We still must address the person with dementia's goals, but the family/caregiver's goals often become primary.
I think allowing doctors to have these discussions with the family are a step in the right direction.
The most important part of the story, however, is lost in a short paragraph in the middle of the story. It was reported that Congress has introduced a bill that will create specific cost codes for Alzheimer's disease for Medicare. These codes would allow doctors to be paid for having discussions with family members and caregivers. This is significant, because as the article states, "keeping family members well-informed can result in better planning and care."
It is amazing to me that it has taken this long for this to be recognized. In the social work class I teach, we talked last week about setting goals. Professionals are really good at setting goals--our goals. We often forget that we need to be setting goals that are consistent with what our client/patient wants. This becomes difficult with that person with dementia, especially when they want to stay at home alone, when clearly that is no longer an option. I told my students that when working with dementia clients, the "client" at some point changes from the person with dementia, to the family/caregiver. At that point, we must then revise the goals. We still must address the person with dementia's goals, but the family/caregiver's goals often become primary.
I think allowing doctors to have these discussions with the family are a step in the right direction.
Monday, April 18, 2011
It Comes in Threes
They say death comes in threes, and it certainly has yesterday and today.
Last night I learned that a client I have worked with for about 2-1/2 years died. This is definitely the worst part of my job--I get close to clients and their families, and then I lose them. Whenever I saw this client, he always, always asked me where I was traveling to next. We would spend a good part of any visit talking about where we had traveled, and now I won't have that to share with him. But I do have those happy memories, and that is what I cherish most about my job.
Today I learned that another older adult, someone in the community I have known for many years, died yesterday, too. I wasn't all that close to her, but she is someone I learned a lot from about aging and working with older adults. As her health failed, I saw her less frequently in a professional capacity, but more often as helper. I even recently helped her visit assisted living communities, and talked with her about her possible choices. Those of us who have worked in the aging community in Tarrant County have lost a friend and mentor.
The third death I learned about was through a facebook post from my brother, about a high school classmate. This person was a year behind me in school, but we were fairly well acquainted, although we had not seen each other since school. It's just always upsetting to learn about a contemporary's death--it reminds us of our mortality.
I hope that is it for awhile, but I guess there are at least a couple of funerals in my immediate future.
Last night I learned that a client I have worked with for about 2-1/2 years died. This is definitely the worst part of my job--I get close to clients and their families, and then I lose them. Whenever I saw this client, he always, always asked me where I was traveling to next. We would spend a good part of any visit talking about where we had traveled, and now I won't have that to share with him. But I do have those happy memories, and that is what I cherish most about my job.
Today I learned that another older adult, someone in the community I have known for many years, died yesterday, too. I wasn't all that close to her, but she is someone I learned a lot from about aging and working with older adults. As her health failed, I saw her less frequently in a professional capacity, but more often as helper. I even recently helped her visit assisted living communities, and talked with her about her possible choices. Those of us who have worked in the aging community in Tarrant County have lost a friend and mentor.
The third death I learned about was through a facebook post from my brother, about a high school classmate. This person was a year behind me in school, but we were fairly well acquainted, although we had not seen each other since school. It's just always upsetting to learn about a contemporary's death--it reminds us of our mortality.
I hope that is it for awhile, but I guess there are at least a couple of funerals in my immediate future.
Thursday, April 14, 2011
When Mom or Dad Doesn't Know You Anymore
One of the hardest things about dementia is when Mom or Dad doesn't know you anymore. It doesn't matter that you've read The 36-Hour Day, or go to the local Alzheimer's symposium every year; it's just hard.
My Dad didn't have Alzheimer's, but at the end of his life, in the advanced stages of pancreatic cancer, he did not recognize me the last time I saw him alive. There is just no way to prepare for the first time that happens.
I just found a brand-new blog, My Father Doesn't Know Me Anymore, that addresses the many complex feelings that come with caring for a loved one with dementia. Finding the blog was accidental--I was looking at Katten & Benson's website statistics on Wordpress, and saw that we had been linked to on this blog. I followed the link out of curiosity, not sure what I'd find.
It turns out that the author is a client's daughter. I have worked with her and her father for about three years. As Lucy says in the blog, we have been through some ups and downs, but what relationship, even a professional one, doesn't have ups and downs? Lucy says some nice things about me and Steve Katten, the attorney I work for, but what I appreciate most about Lucy's blog is her honesty. She tells you what it is like to be a caregiver--the good, the bad, the ugly and the beautiful.
Lucy and her sister are some of the fiercest advocates for a parent I have ever met, and they are truly inspiring. I plan to read Lucy's blog on a regular basis, and I hope you do, too.
My Dad didn't have Alzheimer's, but at the end of his life, in the advanced stages of pancreatic cancer, he did not recognize me the last time I saw him alive. There is just no way to prepare for the first time that happens.
I just found a brand-new blog, My Father Doesn't Know Me Anymore, that addresses the many complex feelings that come with caring for a loved one with dementia. Finding the blog was accidental--I was looking at Katten & Benson's website statistics on Wordpress, and saw that we had been linked to on this blog. I followed the link out of curiosity, not sure what I'd find.
It turns out that the author is a client's daughter. I have worked with her and her father for about three years. As Lucy says in the blog, we have been through some ups and downs, but what relationship, even a professional one, doesn't have ups and downs? Lucy says some nice things about me and Steve Katten, the attorney I work for, but what I appreciate most about Lucy's blog is her honesty. She tells you what it is like to be a caregiver--the good, the bad, the ugly and the beautiful.
Lucy and her sister are some of the fiercest advocates for a parent I have ever met, and they are truly inspiring. I plan to read Lucy's blog on a regular basis, and I hope you do, too.
Monday, April 4, 2011
The Future of Medicaid
I have been getting calls and emails from clients recently worried about Medicaid, and whether they need to start making other plans for their loved ones currently in nursing homes. I am at a loss about what to tell them.
On the one hand, it's hard for me to believe that the Legislature would actually make these cuts, and yet yesterday the Texas House of Representatives passed a draconian budget, including significant cuts to education and Medicaid. Texas nursing homes already lose about $12 per day for each Medicaid resident; cutting Medicaid payments would only increase that loss, and put many nursing homes out of business.
I am afraid there will be some serious cuts, and I fear that some nursing homes will close. I wonder how many legislators have family members on Medicaid in nursing homes. My guess is not too many. It's too easy to sit in a nice office in Austin and make life and death decisions, and make no mistake, people will die if these cuts go through.
I know we have to make some tough choices, and I know we have to live within our means, but I truly think many of the proposed budget cuts are just cutting off our noses to spite our faces. More people will go to the hospital, more people will be depressed, nursing home employees will lose their jobs, family members will lose their jobs. Where is the savings in that?
I'll appreciate any ideas you might have; better yet, send them to your legislator.
On the one hand, it's hard for me to believe that the Legislature would actually make these cuts, and yet yesterday the Texas House of Representatives passed a draconian budget, including significant cuts to education and Medicaid. Texas nursing homes already lose about $12 per day for each Medicaid resident; cutting Medicaid payments would only increase that loss, and put many nursing homes out of business.
I am afraid there will be some serious cuts, and I fear that some nursing homes will close. I wonder how many legislators have family members on Medicaid in nursing homes. My guess is not too many. It's too easy to sit in a nice office in Austin and make life and death decisions, and make no mistake, people will die if these cuts go through.
I know we have to make some tough choices, and I know we have to live within our means, but I truly think many of the proposed budget cuts are just cutting off our noses to spite our faces. More people will go to the hospital, more people will be depressed, nursing home employees will lose their jobs, family members will lose their jobs. Where is the savings in that?
I'll appreciate any ideas you might have; better yet, send them to your legislator.
Wednesday, March 23, 2011
Foreign Territory
It's been four years since I quit working in hospitals. I'm still pretty comfortable in hospitals, but it's easier now for me to see how foreign they are to everyone else. Even if you're just going to an outpatient surgery center for a minor procedure, like my Mom did this week, it can be a pretty overwhelming experience.
Mom was supposed to be at the center Monday morning at 9:00 for a 10:30 procedure. The phone rang at 7:40, and it was the center asking if we could be there at 8:30. Mom was still in the shower, but I told them, yes, we can be there close to 8:30. I'm thinking perhaps we'll be out sooner.
We get there at 8:35. Mom gets checked in, and we go to the waiting room. We wait. People get called back. We wait some more. More people get called back. We wait some more. At least the TV has the Today Show on, and not Fox News. And the volume is low, so it's easier to ignore. Finally, around 10:00 they call Mom back to prep for surgery. They let me go back about 20 minutes later.
In the room, it's cold. I wore jeans and a sleeved shirt, because I knew it would be cold (unlike the person I saw in a sleeveless velvet contraption over running pants, with a yellow mini skirt). I was still cold, though. Mom was cold too, and it seems the nurse didn't help Mom get ready, because the gripper socks they supplied were not on her feet, but on the table.
We wait another hour. The anesthesiologist comes in and asks questions. The surgical resident comes in and asks the same questions. The nurse anesthetist comes in and seems to be the only one who really knows what is going on. The surgeon himself comes in. She finally goes back for the procedure at 11:30. I wait in the waiting room some more. So much for being done sooner.
The procedure takes less than an hour, and she was not fully anesthetized for the procedure, so she's mostly awake when I'm allowed back. She's still kind of groggy, and not really understanding that she can't leave until her blood pressure and heart rate come down. The nurse never really tells me that's what is going on. I just know what to listen for, and I can mostly read the monitors. Finally, after about another 40 minutes, two different nurses adjusting the blood pressure cuff numerous times, there's a reading low enough. But the nurse is out at the desk. I know to go get her, and she literally comes running to see the reading and start turning all the monitors off. I wonder how many family members would just sit there and not get the nurse.
Anyway, we got home, and Mom is doing fine. I realize that I really don't like being in a hospital where I don't know anyone. It's easy to be spoiled when you get all kinds of professional courtesy. And I keep wondering about all the families I work with, and how helpless they feel, because they don't anyone, and they don't know hospitals work. And hospitals don't do much to make it easy.
Mom was supposed to be at the center Monday morning at 9:00 for a 10:30 procedure. The phone rang at 7:40, and it was the center asking if we could be there at 8:30. Mom was still in the shower, but I told them, yes, we can be there close to 8:30. I'm thinking perhaps we'll be out sooner.
We get there at 8:35. Mom gets checked in, and we go to the waiting room. We wait. People get called back. We wait some more. More people get called back. We wait some more. At least the TV has the Today Show on, and not Fox News. And the volume is low, so it's easier to ignore. Finally, around 10:00 they call Mom back to prep for surgery. They let me go back about 20 minutes later.
In the room, it's cold. I wore jeans and a sleeved shirt, because I knew it would be cold (unlike the person I saw in a sleeveless velvet contraption over running pants, with a yellow mini skirt). I was still cold, though. Mom was cold too, and it seems the nurse didn't help Mom get ready, because the gripper socks they supplied were not on her feet, but on the table.
We wait another hour. The anesthesiologist comes in and asks questions. The surgical resident comes in and asks the same questions. The nurse anesthetist comes in and seems to be the only one who really knows what is going on. The surgeon himself comes in. She finally goes back for the procedure at 11:30. I wait in the waiting room some more. So much for being done sooner.
The procedure takes less than an hour, and she was not fully anesthetized for the procedure, so she's mostly awake when I'm allowed back. She's still kind of groggy, and not really understanding that she can't leave until her blood pressure and heart rate come down. The nurse never really tells me that's what is going on. I just know what to listen for, and I can mostly read the monitors. Finally, after about another 40 minutes, two different nurses adjusting the blood pressure cuff numerous times, there's a reading low enough. But the nurse is out at the desk. I know to go get her, and she literally comes running to see the reading and start turning all the monitors off. I wonder how many family members would just sit there and not get the nurse.
Anyway, we got home, and Mom is doing fine. I realize that I really don't like being in a hospital where I don't know anyone. It's easy to be spoiled when you get all kinds of professional courtesy. And I keep wondering about all the families I work with, and how helpless they feel, because they don't anyone, and they don't know hospitals work. And hospitals don't do much to make it easy.
Saturday, March 12, 2011
Reverse Mortgages
I sometimes have people ask my opinion about reverse mortgages, and I have to tell you, I'm not a fan. I think the number of people for whom a reverse mortgage is a truly good idea is extremely small, and for too many people I think they are downright dangerous products.
Now, in the spirit of full disclosure, I got a great deal on my house because it had a reverse mortgage, and the heirs were desperate to sell quickly so they could pay the reverse mortgage off, so I guess I would have to say a reverse mortgage was good for me, it just wasn't MY reverse mortgage.
Anyway, I bring all this up because the AARP has sued HUD over a rule change that is putting a small number of reverse mortgage holders under the threat of foreclosure. The New York Times has an excellent article on the story, which includes some great links of it's own to other sources of information on reverse mortgages.
I encourage everyone to read this article, and follow some of the links included, to learn more about reverse mortgages.
Wednesday, March 9, 2011
One Person's Trash is Another Person's Treasure
Some of you may know that I've done some presentations on hoarding. I've recently been reading the book Stuff: Compulsive Hoarding and the Meaning of Things by Randy O. Frost and Gail Steketee. Frost and Steketee are the gurus of hoarding, and I think Randy Frost is a consultant on at least one of the popular hoarding shows on TV.
Any time I have done this presentation it seems that most people in the audience know someone they suspect is a hoarder, are related to someone who hoards, or they worry that they themselves are hoarders. Frost and Steketee report that between 2-5% of the population, or anywhere from 6-15 million people hoard. That's a lot of people with a lot of stuff.
I'm only part of the way through the book, but I'll share some tidbits:
Any time I have done this presentation it seems that most people in the audience know someone they suspect is a hoarder, are related to someone who hoards, or they worry that they themselves are hoarders. Frost and Steketee report that between 2-5% of the population, or anywhere from 6-15 million people hoard. That's a lot of people with a lot of stuff.
I'm only part of the way through the book, but I'll share some tidbits:
- Hoarding may not be as closely associated with Obsessive Compulsive Disorder (OCD) as once thought. Rather, it seems to be more characteristic of an Impulse Control Disorder (ICD), like kleptomania or compulsive gambling.
- Hoarders often place high value on things that appear to be junk to the rest of us. They have difficulty distinguishing between things with true value and things that are trash.
- Perfectionism appears to play a major role in hoarding.
- Some studies have indicated a high correlation between compulsive gambling and hoarding.
- There also seems to be a connection between possessions and a sense of security, with some people starting to hoard after suffering a severe trauma.
There's no doubt that this is a complex and difficult issue to deal with. I will keep you posted as I work my through this book.
Wednesday, January 26, 2011
A New Form of Assault
Thanks to Robert Kraft (one of those facebook "friends" I don't actually know) for bringing this to my attention.
The New York Times has an excellent blog called the New Old Age. I don't get around to reading it often enough, but this recent entry is very thought provoking. The blogger writes about a recent study published in the Archives of Internal Medicine (the full article is only available by subscription). The study found that people with late dementia are frequently hospitalized too often, with medical symptoms and conditions that could have been treated in their nursing homes.
The study only looked at nursing home residents, and it found that over an 18 month period, 30% were hospitalized. Dr. Susan Mitchell, one of the researchers estimated that fully 75% of those hospitalizations could have been avoided.
So what's the problem? Dr. Susan Mitchell's comment: “Being in an emergency room where people are taking blood and putting in IVs in this crazy, noisy setting — it’s been described as an ‘assault,’ and I concur." If you don't know someone with late-stage dementia, allow me to describe someone I know.
This gentleman has been in an Alzheimer's care home for the last two years. He still recognizes me as someone he knows, but he has no idea how or why. He thinks he's known me for a very long time, but we have only known each other for a few years. He does not always remember his children's names. He is not able to carry on a conversation about anything, although he does still talk. It is reported that he eats a lot, but in the past year he has lost at least 30 pounds, and this over six foot tall man is wearing size small shirts.
Thankfully his family has him on hospice, so there won't be any unnecessary trips to the hospital, but how do you help someone in this state understand what is going on around them? How do you communicate to them what the IV is for? How do you keep this person calm without drugging them? And for what end? When we, as health care professionals or family members insist on sending someone like this to the ER to be treated for pneumonia, are we doing it for the patient, or are we doing it for us, whether it's to cover our backsides (in the case of a health care professional), or because we aren't ready to let a loved one go?
It does seem extreme in some ways to consider this kind of treatment assault, but once you have seen a frail, older adult, who doesn't know or understand what is going on, who only wants to be left in peace, being forced to stay in the hospital for aggressive treatment, you might agree that it is an assault. I happened to see a former colleague earlier this week, and when we worked together in a hospital he had one of these horrible situations. The patient was on a ventilator, he had multiple infections, he had pressure sores, he was on dialysis, and he was like this for MONTHS. His children would not let him go. It was so bad that there were nurses who refused to take care of him, because they felt it was assault. When his family finally agreed to take him off all the machines, he died before they got everything turned off.
We have to start talking about this. We are all going to die--that is one thing I am sure of.
The New York Times has an excellent blog called the New Old Age. I don't get around to reading it often enough, but this recent entry is very thought provoking. The blogger writes about a recent study published in the Archives of Internal Medicine (the full article is only available by subscription). The study found that people with late dementia are frequently hospitalized too often, with medical symptoms and conditions that could have been treated in their nursing homes.
The study only looked at nursing home residents, and it found that over an 18 month period, 30% were hospitalized. Dr. Susan Mitchell, one of the researchers estimated that fully 75% of those hospitalizations could have been avoided.
So what's the problem? Dr. Susan Mitchell's comment: “Being in an emergency room where people are taking blood and putting in IVs in this crazy, noisy setting — it’s been described as an ‘assault,’ and I concur." If you don't know someone with late-stage dementia, allow me to describe someone I know.
This gentleman has been in an Alzheimer's care home for the last two years. He still recognizes me as someone he knows, but he has no idea how or why. He thinks he's known me for a very long time, but we have only known each other for a few years. He does not always remember his children's names. He is not able to carry on a conversation about anything, although he does still talk. It is reported that he eats a lot, but in the past year he has lost at least 30 pounds, and this over six foot tall man is wearing size small shirts.
Thankfully his family has him on hospice, so there won't be any unnecessary trips to the hospital, but how do you help someone in this state understand what is going on around them? How do you communicate to them what the IV is for? How do you keep this person calm without drugging them? And for what end? When we, as health care professionals or family members insist on sending someone like this to the ER to be treated for pneumonia, are we doing it for the patient, or are we doing it for us, whether it's to cover our backsides (in the case of a health care professional), or because we aren't ready to let a loved one go?
It does seem extreme in some ways to consider this kind of treatment assault, but once you have seen a frail, older adult, who doesn't know or understand what is going on, who only wants to be left in peace, being forced to stay in the hospital for aggressive treatment, you might agree that it is an assault. I happened to see a former colleague earlier this week, and when we worked together in a hospital he had one of these horrible situations. The patient was on a ventilator, he had multiple infections, he had pressure sores, he was on dialysis, and he was like this for MONTHS. His children would not let him go. It was so bad that there were nurses who refused to take care of him, because they felt it was assault. When his family finally agreed to take him off all the machines, he died before they got everything turned off.
We have to start talking about this. We are all going to die--that is one thing I am sure of.
Friday, January 21, 2011
New on the Alzheimer's Front
According to a story in the New York Times, the FDA is getting closer to approving a scan that will help diagnose Alzheimer's disease. Right now, we can't definitively diagnose Alzheimer's disease until death, when an autopsy can be done. What a lot of people don't realize is that not only are there many types of dementia, but other treatable medical conditions mimic Alzheimer's.
Other types of dementia are related to vascular problems, such as having several small strokes, or Parkinson's disease. In these cases it might be possible to better treat the cause, especially with vascular dementia, to slow or stop the decline. Depression, which is very treatable, can also mimic the memory loss of Alzheimer's. Delirium is another condition that can look like Alzheimer's. Delirium is frequently caused by an infection, and infections are often successfully treated.
This is good news, because it gives doctors the potential to definitively rule Alzheimer's in or out, allowing them to properly focus their treatment. The article says full approval is still several months away, but it's certainly a great stride forward.
Other types of dementia are related to vascular problems, such as having several small strokes, or Parkinson's disease. In these cases it might be possible to better treat the cause, especially with vascular dementia, to slow or stop the decline. Depression, which is very treatable, can also mimic the memory loss of Alzheimer's. Delirium is another condition that can look like Alzheimer's. Delirium is frequently caused by an infection, and infections are often successfully treated.
This is good news, because it gives doctors the potential to definitively rule Alzheimer's in or out, allowing them to properly focus their treatment. The article says full approval is still several months away, but it's certainly a great stride forward.
Wednesday, January 19, 2011
Growing Older But Not Up
Thanks to Monica, one of the attorneys here at Katten & Benson, for sharing this great article about the oldest African American, Mississippi Winn. Miss Winn died recently at the young age of 113. Another amazing fact about her is that she was one of two known people left whose parents were likely born into slavery. Her niece said that even though she was 113, she thought she was young. Her family thinks one reason she lived as long as she did was because she just handled things as they came, of course, no husband or children might have been a factor as well.
I have my own Miss Winn story. Many years ago, when I still worked in the hospital, one of my patients was a nun, Sister Winifred. At the time that I knew her, she was 101. She was mostly deaf, and didn't see well, and she used to tell us that she figured God decided she had seen and heard enough.
She had been a teacher for many, many years, despite the fact that she did not really want to be a teacher. But she became a teacher anyway, because that is what the Church needed her to do, so she did it. Despite this, she had middle-aged, former students visit her in the hospital. I suspect teaching truly had been her calling, because she had clearly been beloved by many of her students.
The day I told her she was going to be discharged and would be able to return to her convent, she took my hand and said this to me: "I will pray for you every day for the rest of my life. I know that won't be long, but I will pray for you every day". She ended up living another three years. I never doubted that I was in her prayers.
Knowing her for even a short time was a gift I will always cherish. I hope all of you have the opportunity to be touched by a remarkable older adult.
I have my own Miss Winn story. Many years ago, when I still worked in the hospital, one of my patients was a nun, Sister Winifred. At the time that I knew her, she was 101. She was mostly deaf, and didn't see well, and she used to tell us that she figured God decided she had seen and heard enough.
She had been a teacher for many, many years, despite the fact that she did not really want to be a teacher. But she became a teacher anyway, because that is what the Church needed her to do, so she did it. Despite this, she had middle-aged, former students visit her in the hospital. I suspect teaching truly had been her calling, because she had clearly been beloved by many of her students.
The day I told her she was going to be discharged and would be able to return to her convent, she took my hand and said this to me: "I will pray for you every day for the rest of my life. I know that won't be long, but I will pray for you every day". She ended up living another three years. I never doubted that I was in her prayers.
Knowing her for even a short time was a gift I will always cherish. I hope all of you have the opportunity to be touched by a remarkable older adult.
Wednesday, December 22, 2010
Merry Christmas?
I knew it had been a long time since I had posted anything, but I didn't realize how long. Clearly it's been a busy autumn, and now it's only four days until Christmas. The presents are bought and most are wrapped and under the tree, but I still have baking to do, and a house to clean up before my youngest brother and his family arrive from North Carolina. They'll be here for more than a week, and while I will love having them here, there will be no restful time during this holiday season. I've given myself a pass on Christmas cards this year, but somehow it's hard to let that go.I did want to share this intriguing blog post I just read from the New York Times about parent-child relationships. A gerontologist at Cornell University did some research and found that parents will talk about having a favorite child, and how that sometimes influences who the chosen caregiver is. Kind of interesting reading, not sure what I think about it.
Anyway, I do hope everyone has a Merry Christmas, a Happy Hanukkah, a festive Kwanzaa, and a safe and Happy New Year!
Thursday, September 16, 2010
The Tracks of My Tears
I've been thinking a lot about end of life issues lately. Partly because we talked about it in class this week, partly because the 27th anniversary of my Dad's death was earlier this month, and partly because I'm going to 2 funerals in the next few days
The funerals are the worst part of middle age, as far as I'm concerned. Although I bet it gets worse when it's my friends who are dying, and not their parents.
During this week's lecture, and then with a facebook chat with a friend, I've had the opportunity to think and talk about the fact that we don't do grief and mourning well in this country.
We're lucky if we get 3 days off when someone in the immediate family dies, and if it's a cousin or an aunt or uncle, we're fortunate if we can take the few hours it might take to go to a local funeral. Once the funeral is over, well, that's all she wrote. We are expected to go back to work and get on with our lives like nothing happened. I read an article that popped up on Yahoo this week, and Michelle Williams (she was married to Heath Ledger) was talking about hard it was after he died. She made the comment that in Victorian times we got to wear black, then gray, then mauve, then pink, as we moved through the mourning period. Today there is no acceptable outward manifestation of our grief, and I think that's a shame.
The other thing that's gone the way of Victorian times is the vocabulary of grief. We don't know what to say to each other when we grieve. Platitudes like "He's in Heaven now with his Dad" (said to my mother when my 22 year old brother died) can cause more pain than comfort to some. My Dad was only 50 when he died, so Mom's response was that both of them were too young to be dead. As one friend pointed out, after his father's death, getting syrupy sympathy cards only made him dread more cards, and his father was still dead as a doornail.
I know that I struggle with knowing what to say, what to do, how to comfort those who are in pain. And looking back at the times I've been in mourning, it's hard to say what helped the most. Except I know my friends showing up at the funeral meant a lot, my friends making me go to baseball games I didn't care about meant a lot (during my Dad's illness--thanks, Roger), and my friends who pulled me forward and out of the daze of grief meant a lot. It wasn't so much what anyone said, but absolutely what they did.
The funerals are the worst part of middle age, as far as I'm concerned. Although I bet it gets worse when it's my friends who are dying, and not their parents.
During this week's lecture, and then with a facebook chat with a friend, I've had the opportunity to think and talk about the fact that we don't do grief and mourning well in this country.
We're lucky if we get 3 days off when someone in the immediate family dies, and if it's a cousin or an aunt or uncle, we're fortunate if we can take the few hours it might take to go to a local funeral. Once the funeral is over, well, that's all she wrote. We are expected to go back to work and get on with our lives like nothing happened. I read an article that popped up on Yahoo this week, and Michelle Williams (she was married to Heath Ledger) was talking about hard it was after he died. She made the comment that in Victorian times we got to wear black, then gray, then mauve, then pink, as we moved through the mourning period. Today there is no acceptable outward manifestation of our grief, and I think that's a shame.
The other thing that's gone the way of Victorian times is the vocabulary of grief. We don't know what to say to each other when we grieve. Platitudes like "He's in Heaven now with his Dad" (said to my mother when my 22 year old brother died) can cause more pain than comfort to some. My Dad was only 50 when he died, so Mom's response was that both of them were too young to be dead. As one friend pointed out, after his father's death, getting syrupy sympathy cards only made him dread more cards, and his father was still dead as a doornail.
I know that I struggle with knowing what to say, what to do, how to comfort those who are in pain. And looking back at the times I've been in mourning, it's hard to say what helped the most. Except I know my friends showing up at the funeral meant a lot, my friends making me go to baseball games I didn't care about meant a lot (during my Dad's illness--thanks, Roger), and my friends who pulled me forward and out of the daze of grief meant a lot. It wasn't so much what anyone said, but absolutely what they did.
Tuesday, August 10, 2010
More on Predicting Alzheimer's
Here is a followup story to my last post: Spinal Fluid Test is Found to Predict Alzheimer's.
The good thing is that the research is moving quickly on Alzheimer's disease. The number one predictor for developing Alzheimer's is age, with over 20% of women over age 85 developing the disease (2010 Alzheimer's Disease Facts and Figures). And face it, age is not a risk factor we can control. We can eat right, exercise, and do all the crossword puzzles imaginable, but if we're lucky, we'll all age.
I still have qualms, though, about doing spinal taps on people. The article indicates that it isn't as risky a procedure as it once was, but then it goes on to say that most internists and family doctors aren't experienced with the procedure. It was suggested in the article that spinal tap centers could be established, but you know, I have mixed feelings about that. It's just one more silo in an already too fragmented health care delivery system.
The other, probably bigger issue for me is one of ethics. Again, who decides? One doctor in the article suggested it should be a decision made between a doctor and the patient. But can my health plan force or strongly encourage me to have the test? If I want the test, will my insurance company pay for it? If I test positive, will I lose my coverage? Will my provider then pay for early treatment?
If I decide to have the test today, what other kind of ramifications will it have for me? I just purchased long term care insurance, but I'll bet I would have been denied if I had tested positive. Will future employers not hire me?
I think the research is good, but at this point I think that's where it needs to stay--in the realm of controlled research. That's not to say I won't change my mind in the future, I probably will. But I don't want us rushing in to something without really thinking through the long term ramifications for every day people, and making sure that new technology and procedures don't make an already terrible diagnosis even more terrible.
The good thing is that the research is moving quickly on Alzheimer's disease. The number one predictor for developing Alzheimer's is age, with over 20% of women over age 85 developing the disease (2010 Alzheimer's Disease Facts and Figures). And face it, age is not a risk factor we can control. We can eat right, exercise, and do all the crossword puzzles imaginable, but if we're lucky, we'll all age.
I still have qualms, though, about doing spinal taps on people. The article indicates that it isn't as risky a procedure as it once was, but then it goes on to say that most internists and family doctors aren't experienced with the procedure. It was suggested in the article that spinal tap centers could be established, but you know, I have mixed feelings about that. It's just one more silo in an already too fragmented health care delivery system.
The other, probably bigger issue for me is one of ethics. Again, who decides? One doctor in the article suggested it should be a decision made between a doctor and the patient. But can my health plan force or strongly encourage me to have the test? If I want the test, will my insurance company pay for it? If I test positive, will I lose my coverage? Will my provider then pay for early treatment?
If I decide to have the test today, what other kind of ramifications will it have for me? I just purchased long term care insurance, but I'll bet I would have been denied if I had tested positive. Will future employers not hire me?
I think the research is good, but at this point I think that's where it needs to stay--in the realm of controlled research. That's not to say I won't change my mind in the future, I probably will. But I don't want us rushing in to something without really thinking through the long term ramifications for every day people, and making sure that new technology and procedures don't make an already terrible diagnosis even more terrible.
Wednesday, July 14, 2010
Preclinical Alzheimer's ?
An article in the New York Times today reports that medical experts are recommending new guidelines to diagnose Alzheimer's dementia earlier. We're pretty sure the disease starts 10-20 years before people become symptomatic, in fact I was at a seminar yesterday and heard that very statement. But I view this news with trepidation.
The experts propose using MRI scans (expensive), PET scans (even more expensive), and biomarker testing (not even that common, and certainly expensive) to determine if a person "preclinical Alzheimer's". Some of the reasons given for diagnosing earlier is so that the disease can be treated. Except that there aren't any drugs on the market yet that will do that. Aricept and Namenda can only do so much, and as far as I can tell, they might not be effective in this particular instance.
Another reason given is that it will give people the chance to make plans and get their affairs in order. Except most don't do that now. It's rare that we have someone come in and say they've just been diagnosed and they want to do or review their estate planning and talk about when they might need a guardian. Of course I want people to do that, but I don't think many people in their 50's will do that if that faced with a diagnosis of "preclinical Alzheimer's".
I invite you to share your thoughts about this news. Me, I'm going to be chewing on it a while.
The experts propose using MRI scans (expensive), PET scans (even more expensive), and biomarker testing (not even that common, and certainly expensive) to determine if a person "preclinical Alzheimer's". Some of the reasons given for diagnosing earlier is so that the disease can be treated. Except that there aren't any drugs on the market yet that will do that. Aricept and Namenda can only do so much, and as far as I can tell, they might not be effective in this particular instance.
Another reason given is that it will give people the chance to make plans and get their affairs in order. Except most don't do that now. It's rare that we have someone come in and say they've just been diagnosed and they want to do or review their estate planning and talk about when they might need a guardian. Of course I want people to do that, but I don't think many people in their 50's will do that if that faced with a diagnosis of "preclinical Alzheimer's".
I invite you to share your thoughts about this news. Me, I'm going to be chewing on it a while.
Tuesday, July 6, 2010
The Beers List
Just to clarify, I'm not going to talk about Shiner Bock, Rahr Ugly Pug or Corona today.
In my last couple of posts I've talked about some of the negative effects medications can have on older adults. I was pretty unhappy that the nurse at the orthopedic surgeon's office told Mom to take Benadryl, and when we told Mom's geriatrician later in the week, she too was pretty unhappy. In fact, she said she would talk to the surgeon personally.
But like that nurse, I'm sure many of you have never heard of the negative side effects of Benadryl, a common, over the counter medication. One resource available, at least to know which medications have potential negative side effects, is the Beers List (originally published in the Archives of Internal Medicine).
Now, my intent here is not to encourage everyone to go out and question every single prescription prescribed for older adults. Doctors often have to weigh the risks and benefits of a medication. Most people are going to take a strong chemotherapy drug for cancer, despite potentially toxic side effects. The issue is that even common drugs like Benadryl can have really nasty side effects in older adults, that younger people don't have, and too many medical professionals don't know that. So, use the Beers list as a resource, and be sure to talk to your doctor about why a particular medication is prescribed, so you can be an informed consumer.
In my last couple of posts I've talked about some of the negative effects medications can have on older adults. I was pretty unhappy that the nurse at the orthopedic surgeon's office told Mom to take Benadryl, and when we told Mom's geriatrician later in the week, she too was pretty unhappy. In fact, she said she would talk to the surgeon personally.
But like that nurse, I'm sure many of you have never heard of the negative side effects of Benadryl, a common, over the counter medication. One resource available, at least to know which medications have potential negative side effects, is the Beers List (originally published in the Archives of Internal Medicine).
Now, my intent here is not to encourage everyone to go out and question every single prescription prescribed for older adults. Doctors often have to weigh the risks and benefits of a medication. Most people are going to take a strong chemotherapy drug for cancer, despite potentially toxic side effects. The issue is that even common drugs like Benadryl can have really nasty side effects in older adults, that younger people don't have, and too many medical professionals don't know that. So, use the Beers list as a resource, and be sure to talk to your doctor about why a particular medication is prescribed, so you can be an informed consumer.
Monday, July 5, 2010
It's a Rainy Day Today
It's raining this morning. Not really earth shattering news, except that it's almost July in Texas, a time when rain is a scarce commodity.
Something I often talk to the adult children of my clients about is how they can encourage their parents to spend money for care. I talk about how their parents saved all this money "for a rainy day" (see, there is a connection), and yet the parents don't recognize that it's not only raining, but it's a storm out there. But my clients aren't the only ones who don't see the rain.
As professionals, doctors, nurses, social workers and other health care providers have often failed to recognize the storm warnings. Today there is an excellent article in the New York Times about the need to prepare for more care for older adults. This is something I've talked about before. There just aren't enough health care professionals being trained in the very specific care needs of older adults.
Just as an example, I've been to two doctor's appointments with my mother recently, one to her orthopedic surgeon, and one to her geriatrician. Mom has been having trouble sleeping since her surgery, and the nurse at the surgeon's office told Mom to take Benadryl to help her sleep. After the appointment I told Mom she was not going to take Benadryl because of the potentially negative side effects this medication has in older adults (seizures and hallucinations, to name two). Now, I chose not to argue with the nurse, and I'm sure some will criticize me for missing the teachable moment, but this is a nurse that I had gotten off on the wrong foot with, and I suspected she would not take kindly to my interference.
But this is a perfect example of how someone in a medical practice catering to mostly older adults is not properly trained. Luckily, Mom has me to tell what is OK and not OK, but I'm not a medical person, I just happen to know a little more than some. I wonder sometimes how many like Mom have followed this nurse's advice, and had a bad drug reaction, which might have resulted in a hospitalization.
I guess the moral here is that we all need to find ways to encourage young people to fall in love with the idea of working with older adults, and do what we can to support those who already do. Geriatricians are among the lowest paid doctors out there, yet they are the ones who spend the most time with their patients, and that should be rewarded.
Something I often talk to the adult children of my clients about is how they can encourage their parents to spend money for care. I talk about how their parents saved all this money "for a rainy day" (see, there is a connection), and yet the parents don't recognize that it's not only raining, but it's a storm out there. But my clients aren't the only ones who don't see the rain.
As professionals, doctors, nurses, social workers and other health care providers have often failed to recognize the storm warnings. Today there is an excellent article in the New York Times about the need to prepare for more care for older adults. This is something I've talked about before. There just aren't enough health care professionals being trained in the very specific care needs of older adults.
Just as an example, I've been to two doctor's appointments with my mother recently, one to her orthopedic surgeon, and one to her geriatrician. Mom has been having trouble sleeping since her surgery, and the nurse at the surgeon's office told Mom to take Benadryl to help her sleep. After the appointment I told Mom she was not going to take Benadryl because of the potentially negative side effects this medication has in older adults (seizures and hallucinations, to name two). Now, I chose not to argue with the nurse, and I'm sure some will criticize me for missing the teachable moment, but this is a nurse that I had gotten off on the wrong foot with, and I suspected she would not take kindly to my interference.
But this is a perfect example of how someone in a medical practice catering to mostly older adults is not properly trained. Luckily, Mom has me to tell what is OK and not OK, but I'm not a medical person, I just happen to know a little more than some. I wonder sometimes how many like Mom have followed this nurse's advice, and had a bad drug reaction, which might have resulted in a hospitalization.
I guess the moral here is that we all need to find ways to encourage young people to fall in love with the idea of working with older adults, and do what we can to support those who already do. Geriatricians are among the lowest paid doctors out there, yet they are the ones who spend the most time with their patients, and that should be rewarded.
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