Earlier this month, the House of Representatives passed the 21st Century Cures Act in a rare bi-partisan effort. The bill is meant to speed the development of lifesaving treatments, but critics warn it may also allow ineffective or even harmful drugs onto the market.
More than 50 million Americans are caring for a spouse, parent or relative who has a serious illness. Author and journalist Gail Sheehy identifies eight crucial stages of caregiving, drawing on her experience caring for her husband, founder and editor of “New York” magazine Clay Felker.
- Gail Sheehy author of 15 books, including "Passages."
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. Gail Sheehy was totally unprepared for the sudden demands of caring for her ailing husband. In her new book, she writes, "I had nine months to prepare for the birth of my child. I had nine hours to prepare for taking care of my husband." In fact, half of all caregivers work full-time. They spend an average of 20 hours a week in this often underappreciated and yet vital role.
MS. DIANE REHMShe talks about how we can make it through the life altering task of caring for a loved one and actually benefit from the challenge. Her new book is titled "Passages in Caregiving." Gail Sheehy joins me in the studio. I know there are many of you who are facing the same kinds of challenges. Do join us, 800-433-8850, send us your e-mail to email@example.com, join us on Facebook or Twitter. Gail Sheehy, it's so good to see you again.
MS. GAIL SHEEHYI just love seeing you, Diane (laugh).
SHEEHYYou always look like a dream.
REHMAw, thank you so much. Tell us about your husband's illness and how you actually learned of it.
SHEEHYWell, I was sitting in a beauty shop getting ready to go to a concert with him that night and I got a call and it was the voice of an oncologist who had taken out a benign cyst from my husband's neck two years before and he just said, it's not benign.
SHEEHYAnd I said, what? And he said, it's cancer. They re-cut the old pathology slides, it's cancer. So, you know, we were plunged into this chaos, which is what unpaid family caregiving is in the beginning and my husband was very -- you know, I wasn't even 60 yet, Diane, and so I didn’t expect this. My husband was 12 years older, but he'd been very healthy. And we started right off as partners, that was key, and went to the concert anyway. But nobody can do this alone and so many caregivers try to. It's impossible to keep your own health and your own spirits up if are trying to take care of somebody else who can't give you much back.
REHMDid you continue working?
SHEEHYYes, I did. I had to cancel speeches from time to time. This went on over the course of 17 years.
SHEEHYHe had four different cancers, so there were long reprieves in-between and great sense of victory because we would've -- we beat cancer four times. And the second time -- and this I would -- I wanna, you know, tell listeners, you know, don't just take this lying down, but your -- you know, you're dealing with sickness for the rest of your life. The second time he had lymphoma and the doctor said, you know, it's indolent, it's Non-Hodgkin's, I'm not gonna even give you any treatment because it won't extend your lifespan. He said, look, here's what I offer. Go out and do something wonderful you wouldn't have dared before. Do it together.
SHEEHYAnd that's what we did. It took us a year to figure it out, but with the help of a circle of care, which is what I recommend, circle of care. Not only friends and family, but my husband's colleagues were searching for a place that he could get back into action again and do what he did best, which was to make magazines. He was Clay Felker, he was an editor, he'd helped a lot of people in their career, so they helped him. And he meanwhile tried to figure out what he liked to do stripped of setting and title because he was now a marked man with cancer.
SHEEHYAnd when he decided he loved shaping young talent, we've went to University of California, Berkley, where the care circle had found him a position and we moved out there.
SHEEHYBut I commuted so that I could continue my work in New York.
SHEEHYAnd there was some, you know, friction about that because of course he wanted me to just be with him all the time, but I couldn't just work out of a suburban basement and (laugh) and keep -- I -- you know, I have to stay up late at night closing a story or working with editors on a book, so I commuted. And what happened was it made us feel young and in love all over again. It was a new experience and that lymphoma went away.
SHEEHYYeah, it never came back.
REHMIsn't that interesting?
SHEEHYIt really was a very -- it's -- you know, you have to fire up the person's immune system and that happens when they're excited about life, when they're engaged, when they continue with their, you know, friendships and social life and artistic life.
REHMThink about your last book. Well, perhaps it wasn't your last book, but "New Passages."
REHMIn 1995, when you actually talked about the excitement of that stage of life.
REHMAnd that's where you were.
SHEEHYThat's where I was, yeah. He was first diagnosed with cancer in 1992 and -- but he had radical surgery and we changed our lives. In 1995, we were doing something new. We were living, you know, by coastal life, we had two sets of friends in California and New York. I went back and forth. It was -- you know, this can be one of the most magical times of life because you realize how precious every day is.
REHMBut Gail, what did you wish, what do you wish now that you had known back then?
SHEEHYOh, so many things. First of all, this is not for me but for everybody else I know because I did this with my sister and it worked. Working with your siblings is one of the biggest challenges caregivers have because if you take it all on yourself, eventually, you know, the siblings who live farthest away will be the ones first to tell you that you don't know what you're doing. And what you have to do is call a family meeting early, even before this crisis. If it's about Mom and Dad and, you know, you've had a white knuckle drive with Dad and you're worried about him or Mom has fallen a couple of times and you're worried about her. You have this family meeting, but you can't do it with you running it, it has to be a neutral mediator.
SHEEHYIt has to be a social worker or the geriatrician who's done the (word?) geriatric analysis and then everybody gets the same facts at the same time and nobody can really kinda back away. You can just say, what do you do best? Do you have more time? Do you have a little more money? Do you have some connections? Are you a good negotiator? You know, are you better with legal things, research? And everybody can contribute. And then, the biggest problem for caregivers is to be on all the time, always on call.
REHMAbsolutely. And in fact, you and your sister worked out the situation for your mother.
SHEEHYFor my mother, yes.
REHMAnd you worked very cooperatively. Were you surprised at that?
SHEEHYI was because, of course, like every set of sisters, we had our, you know, disputes and our rivalries, but we sat down very practically. This is a practical situation. We love our mother, we want to take care of her well. How can we do that so that neither one of us feel overburdened.
REHMDid you have a mediator doing that or did you just come together?
SHEEHYWe actually did it with ourselves, but it would -- you know, it's normally better with a mediator because the mediator can say something that one of the sisters or brothers doesn't wanna hear. Dad is -- has moderate cognitive decline.
SHEEHYMom has geriatric depression. She needs to get out. You all need to come and, you know, share a calendar online and find out when they can be seen and when they need to go to doctors and everybody needs to participate.
REHMThe problem is that most of this falls to women.
SHEEHYThat's right because we're socialized to think we have to be the nurturers and the biggest first obstacle is most women taking care of parents or a spouse don't think of themselves as a care giver, so they don't even read the things or hear the things that we're saying. It's just what we do, they will say, but I have really good stories in the book about women who realized as their health was disappearing, as they were threatened with losing their job, being fired for making calls during the day to the doctors that they couldn't do it anymore. And one thing that works is you send out a notice saying, I can't do this anymore, every care giver gets there, Mom is gonna have to go into a nursing home.
SHEEHYThat gets everybody's attention.
SHEEHYAnd it's not what you want to do and probably surely not what Mom wants.
REHMAnd one of the people you write about in the book gave up the Supreme Court job and that's Sandra Day O'Conner.
SHEEHYThat's right. And then what happens, such a tragic -- (word?). Her husband's Parkinson's disease worsened and she had to learn how to deal with someone who was cognitively affected. He went into a nursing home and he fell in love with someone else once he no longer recognized his wife and she was happy about that, she said, because he had companionship and comfort, but she had given up her seat on the court and her husband no longer recognized her, so it's really tragic.
SHEEHYI encourage people to keep their jobs if it's a humanly possible. Hire a geriatric care manager, even if you have to pay half your salary to manage, particularly if you are not in the same community with the person you're taking care of because you can give the geriatric care manager permission to talk to doctors in your absence, to, you know, get your mom, your dad or your spouse to a -- to a emergency room if you're not there, to manage a care team, if you have home health workers and it becomes a small business.
REHMAnd of course that is the fact of the matter, small businesses cost money.
REHMAnd not everyone is capable of carrying that out.
SHEEHYAbsolutely. And so the -- very often the only solution is to get your loved one on Medicaid, but then, that will only take care of them in the nursing home, not at home. There is no help for long-term care at home.
REHMAnd that's what needs changing.
SHEEHYAbsolutely does. There's a tiny beginning in the new healthcare law, but it won't kick in for five or six years. But a person who is at home and can't perform two of the normal activities of daily living will be able to apply for $75 a day to pay a family member to help.
REHMGail Sheehy, she has written a new book, it's called "Passages in Caregiving: Turning Chaos Into Confidence."
REHMAnd here's our first e-mail for Gail Sheehy. She's written a new book. It's all about caregiving. She is, of course, the author of the New York Times Bestseller "Passages." Now she's written "Passages in Caregiving: Turning Chaos Into Confidence." William has written, "Do you have any suggestions as to how to set boundaries between the roles of caregiving, spouse, parent of own children who still need you and one engaged in a busy career?"
SHEEHYOh, that's the $64 question.
REHMIt really is.
SHEEHYHow you balance it. Because, you know, the average caregiving is a woman in her 40s who still has at least one child at home and works outside the home and has a husband to deal with. So it sounds like your caller is in that same situation. And I think the boundaries, you know, come -- you know, forming a circle of care that includes not just your siblings or adult children, but friends. Friends want to help, but they don't know how. And if you actually just write out little tasks and send a little e-mail and say, Here are some of the tasks that would be so helpful and mom would love to see you or dad would love another...
SHEEHY...(word?) company and, you know, somebody can come and read if it's at that point or play a game. Also, student volunteers who are studying in the health sciences. You can probably get somebody from a local college or community college to come in and play a game or read to mom or do something. The -- there are work colleagues, colleagues of the person you're taking care of, who probably would love to do something to stimulate him and maybe it's another job, maybe it's setting him up with a website so he can do something from home.
REHMYou know, it's interesting. In your book, you talk about turning points...
REHM...that the caregiver has to master. You talk about shopping, mobilization. You talk about the new normal. Talk about the new normal.
SHEEHYOkay. Once you've been through the shock of life-threatening illness and mobilized and fought it as best you can, then you move into a new normal, which is very different. You can't -- you don't go back to your old life. There is an adjustment because you now have, you know, some limitation on time of life. It may be a long reprieve, but sooner or later, you will probably have a boomerang, another health issue. It may not be related to the first illness. It may be a result of the treatment. My husband, at one point, you know, couldn't feel his legs because of one of the ingredients in the usual chemo cocktail.
SHEEHYSo then walking became the issue.
SHEEHYBut when you get to boomerang, that's when you have to know that, by then, you don't take the first diagnoses. You know, we were at one (word?) institution in New York and we got a, you know, this is the only way to deal with your cancer, Mr. Felker. You have to tell the surgeon that he can do whatever he needs to when he goes in there for throat cancer and it might include taking the voice box, even if it isn't involved with the cancer. He just said it over and over again. He wouldn't listen to me, he wouldn't listen to the daughters and we walked out of there; it was like the end of the world. My husband without a voice? He's a communicator. But we knew now you don't take that first diagnosis. You put out feelers, everybody you know who knows doctors, medical institutions, other places or hire a cancer researcher, which we did.
SHEEHYFinally, we got to the doctor at Mass General who said, well, I do hyperfractionated radiation, come up and see me. I'll see if we can shrink the tumor so that we can remove it without any further surgery. And when we got there, he said, so, with his Chinese accent, you come to me because your husband a big shot, but in New York, they want to cut his throat. And I said, well, you know how they are in New York, they're cutthroat. (laugh) And once we formed a nice humorous association, you know, my husband believed that this was going to cure him and it did. That's a big part of it.
REHMExtraordinary. Then another stage, you say, is playing God.
SHEEHYYes. And this sadly is where so many of the most devoted caregivers find themselves because they are on duty all the time, hyper vigilant, never feel like they're doing enough and come to believe that they are the only ones that are saving their loved one from day to day. I got there, too. And when -- it's okay as long as things are going well, because you feel very important, absolutely necessary, but when things don't go well and since you don't control illness, eventually things will backfire. Then if you're God, it's your fault and that's a devastating blow. So you have to understand finally that there is a God, if you believe in one, but you're not it. And you can't control the process. You can only do the best you can and you do have to have other people helping in a circle of care.
REHMOne thing that I and my husband have certainly found is that when we go to the doctor, we both go to the doctor.
REHMAnd I have encountered people who say, oh, I never go to the doctor with my husband or my wife.
SHEEHYI can't believe it.
REHMAnd people need to understand that one person can't hear it all.
SHEEHYOh, no. The person who is ill often just shuts down. I mean, there was a couple of times when my husband actually fainted until he learned self-hypnosis, because sometimes it would just be the terror of...
SHEEHY...what he was going to hear.
SHEEHYIt was overwhelming. And you know what I do, Diane, because I'm a reporter, I would take a pad and always take notes.
SHEEHYAnd then I -- when it was a really important consult, I'd take a tape recorder. And you know what, the doctor's would appreciate it, 'cause they know you're not going to hear everything. You're either going to hear worse than what you can -- he's saying or you're going to hear selectively and then you're gonna be calling him and bugging him about what was said.
REHMYou also talk about the in-between stage.
SHEEHYRight. This is where chronic illness comes in and most illnesses today eventually develop into chronic illness, whether it's heart disease, cancer, stroke, diabetes, Parkinson's, all the autoimmune diseases. So the person can't be cured in the acute care hospital, which is the way our system is set up, but they're not ready for hospice. They may be a long way. They may be years away...
SHEEHY...from hospice. Where do you care for them? That's the hardest stage of all because we don't have long-term care fortified by any government payments.
REHMWhat did you do?
SHEEHYWell, I hired aids. I hired a geriatric care manager who helped me through the maze of possibilities and an elder care attorney who could say, here's what you can do, here's what you can't do. And until you know that, you're liable to make a really expensive mistake. So my elder care manager -- I mean, my geriatric care manager and I went out on the gray market, which is mostly immigrant women, as opposed to going to an agency where you have to pay for eight hours and it's a set fee and we found women who had had experience taking with -- taking care of somebody in the same situation as my husband because it's all about making, you know, a human connection between the patient...
SHEEHY...and the homecare person.
REHMHow long was that period for you?
SHEEHYThat period was two years. And I -- it was very important to bring the person in and have them meet Clay, talk to Clay, have a real conversation, have tea together, get to know each other because the chemistry has to be right. Otherwise, the patient will just fire the person.
REHMHow long was the final stage?
SHEEHYWell, the final stage -- he didn't have cancer. He just had all of the deficits of treatment for four different -- different cancers and he was not able to walk very well, but even at the end, like a few months before he died, his own doctor, palliative care doctor, ordered me to go out on the road on the presidential campaign and get back to work. He said, if you don't do that, you're not going to be replenished when you really need to be here all the time. And that was exactly true. I went out, covered the Hillary Clinton campaign, but the doctor made that recommendation at Clay's bedside and got Clay to endorse it. He said, yes, go out, go to work. Just call me and let me know what's going on.
REHMSo by this time, Clay was bedridden.
SHEEHYAt home, but he was going out, I mean, with a walker or a wheelchair and with aids who were taking care of him while I was gone. And when I came back replenished, even though I hadn't been sleeping, because you know what a presidential campaign is like, I felt so good. I would take him out to a jazz concert, to a pre-rehearsal at Philharmonic Hall and he was -- you know, he would feed off my energy and that made all the difference. Otherwise, he would've just kind of, you know, slept away, but he really wanted to live up until the last day of his life and he did.
REHMGail, what was the most difficult point for you?
SHEEHYIt was the point at which the doctors who had been taking care of him, a pulmonologist, and had tried to clean out his lungs after multiple pneumonias, he said, your husband has entered the cycle of slow dying. That was a terrifying phrase. I said, how long does that take? He said, well, he could live like this for another year or two. Wow. I said, I don't know if I can take that. And he said, well, what's the alternative? I said, can you tell me? He said, the next time he gets pneumonia, don't bring him back to the hospital. Now, he was saying something that was true. You can't be cured finally in an acute care hospital, so that means take him home or take him to a nursing home.
SHEEHYWell, I chose to take him home and then I made a call. I call it the 811 call before you call 911 for the screaming ambulance. The 811 call was to a palliative care doctor at Mount Sinai where they have a very progressive team. And I said, we have an appointment for a consult in a few weeks, but I can't wait that long. My husband is kind of choking and I think he has pneumonia again, but he can't be cured in the hospital. He said, I'll make a house call. I couldn't believe it. And he came over and he sat knee-to-knee with my husband for an hour and asked him what did he need to continue wanting to live. What was important to him? What were his goals? We would match the treatment to his goals.
REHMAnd what did Clay say at that point?
SHEEHYHe said, I want to be with Gail, his wife, me, and he said, I want to go out in the world and see what's going on for as long as I can. And that became our directive. We did that when he, you know, could hardly sit in his wheelchair. He said, I want to be able to walk again. The doctor said, we can do number one and number two. We probably won't be successful with number three, but we can make it better, we can improve. And right away, that day, he went out and started practicing walking with the walker in a different way. And he did improve to some degree and that just kept him going. So then we formed this team where we had a nurse who came a few times a week to check and see before anything developed into a crisis.
SHEEHYWas able to talk to the doctor. I had the doctor's cell phone number and I could call him when things looked like they were getting out of hand. We were able to keep him at home, you know, comfortable, pain free and eventually discontinued any medication or -- and he recovered himself from the next pneumonia because he was home, comfortable, safe, surrounded by -- being visited by friends and family and read to and taken out. He lived for another year that way.
REHMGail Sheehy, her husband was Clay Felker who founded many magazines. Her new book is titled, "Passages in Caregiving." You're listening to "The Diane Rehm Show." And it's time to open the phones, 800-433-8850. Send us your e-mail to firstname.lastname@example.org. First to Eric, who's in St. Louis, Mo. Good morning to you.
ERICGood morning, Diane. I wanted to ask Ms. Sheehy a couple of questions. One, which is I'm pretty sure fairly obvious, to what degree are things easier when financial resources are reasonably abundant in situations like this? And for ordinary people -- you've mentioned several times, made reference to geriatric care managers, how does one begin to even look for such a specialist and how does one determine who's both competent and trustworthy?
SHEEHYGood questions. There is an website for geriatric care managers and if you just put in geriatric care manager in your computer you'll get the web site up. You put in your zip code and you find -- and they will come up with people who are near you that you can call. You call them, you talk to them over the phone. They'll always do a little consult over the phone. If you like the way somebody sounds, you tell them a little bit about the situation of your loved one. They'll come and do a consult and they will charge for that consult, but it may be two hours and really, you get a very good assessment of what's needed. You know, it may be less than you think or it may be more.
SHEEHYThen you can -- and if there's a chemistry between the patient and the care manager, then you might want to hire them for something longer because they know how the system works. It's broken, they know where the holes are. They know how to help you around them and they can help you hire people if you need somebody to come in and also vet those people and they probably have a roster of people that they know.
REHMAnd his first question was in regard to finances.
SHEEHYRight. Of course, if you have some money, it does help because you're going to have to hire help to keep yourself working, but I look at it this way, if -- you need to keep your own health insurance, you need to keep your own social stimulation, you need to have a sense that you have, you know, meaning in the world outside of a sick room. So even if you have to, you know, send a lot of your paycheck, turn it over to other people who are helping at home, it's the best solution because...
REHM...you have to keep your own life.
SHEEHYYou do and you -- because, you know, the most tragic thing is at the end of fulltime caregiving, there's -- your partner, your loved one is on a different path. They're not going to come back. You have to come back and you have to prepare yourself to come back well before the end of that -- your loved one's life.
REHMSo just to be clear, you're saying Google geriatric care managers.
REHMAnd then that comes up...
REHM...and you put in your own zip code...
REHM...and that will offer you a choice, a variety.
SHEEHYRight. And they -- you know, the contact numbers are there and you call several people and see who sounds like, you know, somebody your loved one would like and then try to have a consult. Even if you just have one three-hour consult, they can tell you so much in that period of time, it's worth the money.
REHMEric, I sure hope that helps. Gail Sheehy, her new book is titled, "Passages in Caregiving: Turning Chaos into Confidence."
REHMAnd here we go back to the phones with Gail Sheehy as she talks about her new book "Passages in Caregiving." Let's go to Three Rivers, Mich. Good morning, Mary, you're on the air.
MARYGood morning, Diane. Thank you very much for this program. I was elected to a very stressful county position and several months later, I found my mother in her bathtub. She'd been there three days.
REHMOh, my gosh.
MARYAt that point, there really isn't a lot of choice and I was the only sibling around. I had four others and I had still -- it still is emotional for me to think that really at that point, all I could do was call an ambulance and everything just seemed to fall into a horrible place and she never went home.
MARYAnd I -- so many things have been covered in this program, but I wanna say because of my county position, I could take any calls I wanted.
MARYI was a field inspector and I would go and get her at the nursing home and take her out on inspections.
SHEEHYOh, great, wonderful.
MARYAnd -- but other horrible things happened. I revamped my house and spent thousands of dollars to try to get her back and you just -- sometimes you just can't get them back.
SHEEHYYou know, that's so sad. One of the things I found is these traumatic transitions from hospital to rehab...
SHEEHY...or from rehab to...
SHEEHY...home and fighting with people about -- I actually have a story in the book about a man who was a healthcare professional and a social worker and he had to go in and fight with the medical director to take his mom out of a nursing home because she wasn't being given her medication or food. And here are the magic words, it is not an unsafe discharge. I know my mother, I know her home, I'm gonna take care of her. We know her better than you do. You've hardly looked at her. And you can just -- you can say, I take responsibility for what you're gonna call an unsafe discharge and take your mom home, but then you have to be prepared for what that means. It may mean having a lot of equipment, although...
MARYAnd that, I could not do. She needed catheters.
MARYShe had serious diabetes.
SHEEHYOh, by that time...
REHMI'm so sorry.
REHMMary, thank you for calling. To Peter, who's in Chevy Chase, Md., good morning to you.
REHMHi there. Go right ahead, sir.
PETERHi. Thank you for your program, Diane. Yes. I listen to another radio program with a representative of the DCAARP. He talked about the people in nursing facilities being stuck in the nursing facilities and that really extremely describes my mother's situation. She's in a nursing facility now. I did not put her there and she is stuck there and she does want to come home and this is very extremely a human rights situation.
SHEEHYWell, I don't know why you can't -- you know, you can actually say, I wanna take my mother home.
SHEEHYYou know, so nobody can hold (unintelligible) but you...
REHMBut you've got to have facilities...
REHM...to take care of.
SHEEHYWell, at this point, I think you need a fixer.
SHEEHYAnd I call a fixer like you had to have in the Soviet Union in the old days. You need a social worker or an elder care attorney who can tell you, you know, the right words to say. Sometimes I would go to a doctor in the rehab facility and say, I can't get anywhere with my husband's insurance company. They just say, no, no, no, they can't...
SHEEHY...provide the nurse that he's supposed to and he said, I'll talk to them. These are the words they like to hear. He needs to be monitored. He needs to be -- you know, can you do it five days a week? They'll say, no. Can you do it three? Well, let's agree on four. You have to go to an authority and say...
SHEEHY...I am not getting one anywhere, help me.
REHMGood luck to you, Peter. One story you tell in the book is about a woman who almost walks out. I mean, she just cannot stand the thought that her husband is totally incapacitated and she's gonna have to take care of him.
SHEEHYYes. That was where he had early stage Alzheimer's and couldn't admit it. And she -- what she did was go to a hotel for three nights (laugh).
SHEEHYAnd as soon as she walked in and lit a cigarette, she felt so much better.
SHEEHYAnd she said -- she left him a message saying, I'm only a few blocks away, but I'd really appreciate it if you didn't call me. I'll be back in a few days. And when she went back and she had, you know, more replenishment. As I said, my husband's own doctor ordered me more than once to go away and work or go away and just sit on a porch and replenish myself. And because I did that, I was able to come back in the very last week of my husband's life. And when he asked the doctor, how much time do I have? And the doctor said, well, about a week.
SHEEHYI said, do you want to do something wonderful, sweetheart? Jazz. 'Cause he loved jazz and he lit up. And I ran to the computer and I said, Dizzy's Coca-Cola Club has a concert tonight. Do you think -- it's in two hours. Can we get ready that time -- that quickly? He got -- literally pulled all of his leftover energy together, went -- got up from the hospital bed, went to his closet, put on a jacket and a cap and I put tinted sun screen on him to give him color and wheeled him in front of the mirror and he looked pleased because he looked almost normal.
SHEEHYWe got to the jazz concert. He played the drums on, you know, with knife and fork...
REHMThe table. Sure.
SHEEHY...on the table for a couple of hours and, you know, we really forgot that he was ill for those couple of hours. And when we got home, he just gripped my hand and said so plainly, that was a magical evening. And two days later, he died.
REHMAnd you were there with him.
SHEEHYI was right there with him holding his hand.
REHMOh, Gail, so sorry, so sorry for your loss.
SHEEHYThank you. Well, we had a -- we had a good ride, Diane. Seventeen years from the first diagnosis and many of those years were among our best.
REHMHow long were you married?
SHEEHYTwenty-four years. Almost the 25th, but we'd been together 17 years before that off and on in rather tempestuous relationship, but -- so we had spent most of our lives together.
REHMThat's wonderful. All right. To -- I have to tell you, we have had many, many questions about so-called gray market...
REHM...concerns about the gray market.
REHMCan you offer some guidance?
SHEEHYWell, I think you can have a person from the gray market, that means not from an agency, vetted and I think if you ask -- if you ask a geriatric care manager, they'll know, you know, how to look at their papers to find out if it's an illegal immigrant, if you're gonna be in trouble there, to -- how to provide workman's comp, how to pay for that, you know, so that you don't get into trouble if they have an accident on the premises. You are taking more of a chance when you hire somebody who isn't documented by an agency.
REHMBut that's going to be less expensive.
SHEEHYYes, it is less. Well, and not only less expensive, but you can pay the aid what they're really worth or something close to it...
SHEEHY...as opposed -- directly as opposed to the agency taking so much and paying them about $8 or $9. An awful lot of aids can't do very much at all. They cannot handle medication, they can't -- you know, they can make a meal. They can do a little light housekeeping, they could do a little shopping, but they can't handle a feeding tube, they can't handle a trache, they can't handle a catheter, they can't handle a wet wound. So, you know, really, what are you getting?
REHMAll right. Let's go back to the phones to Linda who's in the greater St. Louis area in Illinois. Good morning, you're on the air.
LINDAGood morning and thank you. I'm just so excited to hear this conversation. I pray every day, I pray every day for the rights of the elders in our nation.
LINDAAnd I thank Peter for his call, but I thank Mary for her call and I really don't know where to start here. Yesterday was my dad's birthday and I lived with him in our house -- in my parent's house for six and a half years and I have seen just about everything under the sun and the moon (laugh).
LINDAAnd I have been through some really tough times.
SHEEHYWhat do you do for yourself?
SHEEHYWhat do you do to take care of yourself?
LINDAOh, I do a lot of things. I know how to take care -- I do a lot of things for myself. Now, the caregiver agency that we use, since you were talking about that, they referred us to elder abuse on the basis of some pretty flimsy stuff, which was -- they misunderstood, but that started a cycle which was demoralizing to me and it ended up with both my parents institutionalized.
LINDAYou know, I...
REHMLinda, tell me what your...
LINDAThey did not do us a service (unintelligible).
REHMOkay. Linda, tell me what your question is for Gail.
LINDAYes. Well, let's see. How can we, hmm.
SHEEHYI would say that elder abuse can go both ways. Sometimes the person who's being taken care of can be very abusive to the caregiver, who feels guilty and doesn't want to -- doesn't know how to defend himself -- him or herself. And I think that whenever that starts to happen, you have to get other people into the mix. You know, you have to get another person in there to help with the care so that you are not so overstressed that things are likely to get out of hand.
REHMLinda, thanks for calling. One e-mailer, Laurie, recommends going to the National Association of Professional Geriatric Care Managers...
REHM...and that's someone you recommend in the book at www.caremanager.org.
SHEEHYRight. And I think one of the biggest problems is that caregivers don't take enough care of themselves until they just become -- they're on a stress cycle that is of hyper vigilance that never turns off.
SHEEHYSo eventually, there is no stress chemical left.
REHMAll right. To Wolf Lake, Mich., good morning, Carl.
CARLGood morning, Diane. I love your show and appreciate your guest and the topic today.
CARLLast week, I lost my father to complications from Alzheimer's and...
REHMOh, I'm sorry.
CARLThank you. And two weeks before that, my mother from a similar complication.
REHMThat's so hard.
CARLBoth of them -- because of the illnesses they had, both of them had dementia, so they were not able to communicate quite as well as your guest's husband was and I had to kind of jump in as their son to make sure that their needs were being met...
CARL...and many times against their objections and strong objections.
SHEEHYRight. You know, the interesting thing is that Alzheimer's leaves two parts of the brain pretty much alone, emotions and creativity. So people have very strong emotions and opinions until the very end and don't have any inhibitions about expressing them, so you had to be very strong to take over and that was very good of you. The other thing is, it's good news about being with someone with Alzheimer's in the book, is that because the creative part of the brain is pretty much left unscathed with Alzheimer's, you can actually reach people through art and music because it's...
REHMThat's interesting, yes.
SHEEHYAnd even get them to an art gallery or a museum and very often they will have a wonderful emotional response and it will call up something from their history because it's not related to facts.
REHMGail Sheehy and her book is titled "Passages in Caregiving." You're listening to "The Diane Rehm Show." And now to Cincinnati, Ohio. Good morning, Mike, you're on the air.
MIKEGood morning, Diane.
MIKEYeah, my wife passed away just over a year ago.
REHMOh, I'm so sorry.
MIKEThank you. Actually -- I apologize. My story's actually a positive one. She was diagnosed with esophageal cancer and went through chemo and radiation and then surgery. Unfortunately, she had pulmonary problems and...
MIKE...never quite recovered from the pneumonias that kept reoccurring time after time, but...
SHEEHYSame exact thing that happened to my husband, yes.
MIKEYeah, I kind of sensed that when I heard your story before. The good news was I work as a consultant in the medical industry and the fact that the hospital had free internet access, Wi-Fi, allowed me to actually be there with her...
MIKE...all day, every day.
MIKEAnd to still be able to provide for us, so...
SHEEHYThat must've been a great comfort to her.
REHMI should say.
SHEEHYYou know, and today with Skype, people can actually be in much more visual contact with a loved one who is either in a hospital situation or long distance and that stimulation is so important.
REHMYou know, a lot of people are asking about long-term care insurance.
REHMDo you recommend that?
SHEEHYIt's an individual decision because it may be more expensive and not provide enough care in the end.
REHMIsn't it capped at something like $115,000 in most cases?
SHEEHYAnd, you know, in New York City, a good nursing home costs about $13,500 a month (laugh).
SHEEHYSo -- and home care costs -- if you're -- if it's round the clock, will cost $15,000, it could even go up to 20,000 a month. I mean, it's a staggering amount, but -- and many of our parents who are maybe in their 80s or 90s or over were too old when long-term care insurance came out, so it's too late for them. So there are some other programs. One wonderful program, PACE, is a Medicaid waiver program where you can actually get a patient who is on Medicaid to go to a local center where they can see all their doctors in the same place and have some social stimulation two or three days a week. Sometimes they will send a caregiver to the house to bathe and dress them and get them in transportation to the center. The PACE program, it's an excellent thing to look up if your loved one is on Medicaid.
REHMGail, you have done so much research, not only for your own husband, but for all of us. That's just marvelous.
SHEEHYWell, it's a way of, you know, making my loss count for something. I want to be a guide to other people because I know how lost so many caregivers feel. And when you -- I found that when I understood that this is like a labyrinth, it's like a circle that you keep going around the circle and you come upon sudden twists and turns and sometimes you feel you're doubling back it -- and you know where the crisis turning points are and how to prepare yourself for them, it becomes something that's more easily able to handle with confidence instead of feeling like you're in chaos.
REHMGail Sheehy, her new book is titled "Passages in Caregiving: Turning Chaos into Confidence." Thank you.
REHMAnd thanks for listening all. I'm Diane Rehm.
ANNOUNCER"The Diane Rehm Show" is produced by Sandra Pinkard, Nancy Robertson, Jonathan Smith, Susan Nabors, Denise Couture and Monique Nazareth. The engineer is Tobey Schreiner. Dorie Anisman answers the phones. Visit drshow.org for audio archives and CD sales. Transcripts from Soft Scribe and podcasts.
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