By George Ellison
WebMD Live Events Transcript
Vern Ellison shares his experiences maintaining his marriage and assuming a caretaker role as his wife succumbed to Alzheimer's disease.
The opinions expressed by Mr. Ellison are his and his alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD Live's Senior Vitality Auditorium. Today we are discussing Alzheimer's Disease in She Never Said Goodbye, with Vern Ellison.
George "Vern" Ellison, 65, is the loving husband of Sara Ellison, the subject of She Never Said Goodbye. They have been married for thirty-seven years and are the proud parents of three children and four grandchildren. After serving for twenty years in the Marine Corps and retiring with the rank of major Ellison spent seventeen years in the California Community College system teaching and coaching at Palomar College in San Marcos. He now dedicates his time to Alzheimer's awareness and education.
Mr. Ellison, welcome to WebMD Live. Why did you write your book She Never Said Goodbye?
Ellison: I wrote it initially as a tribute to my wife. There are millions of people who have gone through Alzheimer's who are going to be forgotten, and I think this book will help her be remembered. Secondly, my wife never got to know her grandchildren. They never got to know her. They know her in her illness and this will be a record for them that they can read later in their life. The most important reason is the Alzheimer's Association is trying to get the word out about the disease that is almost becoming epidemic for those getting older in life. As we extend the lives, we're going to have millions of demented elderly who are going to require care on a daily basis. There's no prevention or cure found. Right now, the present four million plus victims of Alzheimer's is expected to reach 14 million by 2050. That is, if there's no prevention or cure on the horizon. Right now, the information I have is it is going to be at least 15 more years before some solution might be found. It's estimated that when a person reaches 85, they have about a 50% chance of coming down with Alzheimer's Disease. That is going to be a lot of people, particularly when we have the baby boomers around the corner. Next year the first baby boomers start turning 55. It's going to be the baby boomers that lead us into a tragic situation as it pertains to Alzheimer's.
Moderator: Were you a writer before this book, or was it truly a labor of love?
Ellison: I'm not a writer. This is my first and only book and probably my only book ever. I think there's an important message in the book and people who have read the book feel that everybody should read the book, particularly those that have reached the golden age of 50. Everybody feels this is an important book with important information that people should consider in planning their lives. Through my research, I found out that a lot of people plan for retirement but nobody seems to plan for becoming old. People have to plan for their very elderly years. Sixty-five is no longer old.
Moderator: Are you referring to financial planning, or lifestyle planning?
Ellison: Everything. Financial, lifestyle, just planning on becoming old, because that's a fact. In today's paper, the Associated Press put out an article that life expectancy is going to be more than was planned for. Right now it's about 76-1/2 years. Fifty years from now, it will be almost 83.
Moderator: What did you know about Alzheimer's disease before this journey with your wife began?
Ellison: Nothing. Basically absolutely nothing. I had heard about Alzheimer's. I read about some of the famous people who have gotten it. You hear about the important people. I just heard that Alzheimer's was something to do with getting old and memory problems. Along this little trip I've been taking with my wife, I've learned a lot of things, many of them the hard way.
Moderator: How is your wife doing now?
Ellison: My wife is still alive. She no longer talks. She's incontinent. The first week in April she fell and she was having trouble walking. She can no longer walk unassisted. She's in what's called a Merrywalker. They have a chair, they sit down in it and they can walk, but they're supported by the railings as they move this contraption around. It keeps them from falling. It enables them to walk unassisted. She's in the final stages of Alzheimer's. She was diagnosed eight years ago and according to the Alzheimer's Foundation, the average life span from diagnosis to death is eight years. My wife has now reached that eighth year.
Moderator: May I ask how old your wife is?
Ellison: My wife is 64 now.
Moderator: Is there a typical age range in which Alzheimer's sets in?
Ellison: It varies. It is estimated that at age 65, about 10% of the population has Alzheimer's. At age 85, almost 50%. My wife came down with it in her mid-fifties which is referred to as early onset Alzheimer's. Some people in their twenties have gotten it. It's unusual. As you grow older, the chances start multiplying rapidly.
Moderator: How did your wife's behavior change from the onset of her disease to the present day? How rapidly did these changes take place?
Ellison: It came on rather slowly. There were some incidents as I think back, some of the things that she did that were not explainable were probably due to Alzheimer's but we weren't aware of it at the time. The real things that started out was she became depressed, confused, forgetful, and as things went on, she started becoming hostile, which was nothing that I could relate to. That wasn't her. She changed into another person.
Moderator: How does this affect you, as the spouse?
Ellison: It doesn't just affect the individual that has it. It affects those around them, spouses, children, relatives, everybody becomes involved. It's hard. The caregivers -- and I've talked to many of them and everybody kind of handles it differently. It's a hard job. The title "caregiver" is all encompassing because you are the caregiver for somebody who has Alzheimer's. That's another interesting point. It is estimated that by 2005, elder care will surpass child care. There will be more elderly requiring care than there will be children. That's going to be increasing significantly.
Moderator: Are we as a society prepared for the coming onslaught of gerontological need?
Ellison: I'm going to have to use the words of Kenneth Dychtwald, the author of book called Age Power. He says we are not even close to being prepared. The baby boomers -- I was around that time -- in 1945, millions of service men came home in 1945. A year later, we were not ready for all the babies that were coming down like a rain storm. The hospitals were not ready. There were not enough pediatricians. Children were being born in hallways. The schools weren't ready for them either. When the baby boomers came forth, baby food was in short supply, diapers, there wasn't enough toys. They went to the school system and they kind of wreaked havoc everywhere they've been. There's not enough geriatric practitioners to even begin to take care of the elderly. As he sees it, he sees a disaster about ready to happen here as these 78 million baby boomers reach old age.
Moderator: What drugs are currently available to help slow down the deterioration of those with Alzheimer's Disease?
Ellison: Right now the principle one is Aricept(donepezil). My wife was on tacrine (Cognex). That was part of the first medication that was supposed to slow the effects of Alzheimer's. Those things only last for maybe six to nine months. It does slow it down but does not cure it.
Moderator: Are you aware of any promising new treatments on the horizon?
Ellison: There are all kinds of tests going on. I was just talking to my wife's sorority sister's husband. He's a research physician on Alzheimer's at the University of Kentucky. He was talking about different things being done. He said he saw no real breakthrough for at least 15 years. A lot of people involved in Alzheimer's research, they meet semi-annually to share information gathered, to network as to latest developments in research efforts.
Moderator: Are there any things people can do to prevent Alzheimer's?
Ellison: That's the problem. They don't know what the cause is. If you don't know the cause, you can't really plan for prevention. Like weight control, you know if you eat too much, you're going to have a weight problem. All kinds of theories have been tested and eliminated. As of yet, they just don't know.
Moderator: Alzheimer's is a genetic condition?
Ellison: My understanding is that people can be predisposed to it through genetics or family history. My understanding is that in the case studies, they have identified like 120 families where everybody in every generation has come down with Alzheimer's. That's an unusual situation there.
Moderator: With all of the recent news about genetics and genetic research, how will this affect Alzheimer's disease in the future?
Ellison: Undoubtedly it's going to help somewhere along the line. This has been the decade of the brain. President Bush signed that in as the decade of the brain. In a recent article, they have found out more about the brain -- 90% of what they know about the brain has been learned in the last ten years. They expect further brain research is even going to be more significant in the future. Right now, there is no solution for Alzheimer's, no cure and no prevention. Nobody knows what causes it.
Moderator: Do we ever see a natural reversal of the effects of Alzheimer's disease without any assistance from medical technology?
Ellison: I've never heard of it.
Moderator: Once diagnosed with Alzheimer's or dementia, what are the options available?
Ellison: Early onset, they can take Aricept. Alzheimer's progresses at different rates in different people. Every case is different. Some people can be diagnosed and die within two or three years. Some can be diagnosed and live for 20. The path they take varies in speed and what happens to people. There's no reversing. You don't go backward. People just proceed along the path at different speeds.
Moderator: It is said that Alzheimer's can be fatal. How does it actually kill people?
Ellison: A hundred thousand people die a year from Alzheimer's. I take exception with that figure. A hundred thousand is not close to the number of people that die. The Alzheimer's people say we have four million, or over four million victims right now. They say the average life span from diagnosis to death is eight years. If you divide eight years by four million people, every year 500,000 people would die. I went to a seminar one time and I asked a neurologist that mathematical question and he said it depends on what the coroner puts on the death certificate. Many times they die of heart disease, strokes, et cetera. One of the problems with Alzheimer's that can hasten their death is they have no ability to care for themselves, or inform someone that they have a problem. They don't have that communication capability for the most part and thus medical problems may go unidentified for a length of time. Alzheimer's can hasten the death of somebody due to fact that they are incapable of conversation and self-help. It takes caregivers and doctors to observe the signs and symptoms that might lead to diagnosis of a medical problem other than Alzheimer's.
Moderator: So Alzheimer's as an actual cause of death is almost as a result of it inhibiting access to care, in a sense?
Ellison: Right. That's correct.
Moderator: Why did you place your wife in a nursing home?
Ellison: For her safety. My wife was a very active athletic woman right up to where she became ill. She used to play tennis every day. She was in great physical condition. She maintained her weight at 110 pounds. She was in excellent physical condition. She was to the point where she could outrun me. Her tendency to wander got to a point where I could no longer guarantee her safety at home. I couldn't risk losing her by having her getting away and wandering. Here in San Diego County, I've read of three cases where people wandered off, later to be found dead. I just did not want that happening to my wife. When I put her in a nursing home, I put her in a locked facility so she could not escape. That's about the only way I could see to handle the situation. Alzheimer's victims, for the most part, are taken care of at home. About 70% to 75% of Alzheimer's victims are taken care of at home. My wife was young. Had my wife been older, that may have been different. When you're young and mobile, I looked at it as a dangerous situation where she could wander off and I'd lose her.
Moderator: What is your opinion on the availability of care for Alzheimer's patients?
Ellison: In nursing homes, most of them do not take Alzheimer's victims. That's a specialized area. You can't go into any nursing home and expect to them to take care of a loved one with Alzheimer's. Right now, here in California, this past November, the California Healthcare Facilities Association, they were on the radio announcing the fact that California was facing a nursing home crisis from the standpoint of caregivers. They predicted that this year, they are going to be 30,000 people short in this industry. The nursing home industry is kind of in a crisis situation from a standpoint of qualified caregivers. In the nursing home where my wife is, the turnover in the last five years has been phenomenal. Out of 100 and some employees that were there, there is only one left. It's a very challenging profession. It's a very hard job. I certainly appreciate the care my wife has received from most people. Many of them are very dedicated people. The crisis seems to be appearing. There seems to be a coming crisis in caregiver availability. Caregivers are family for the most part. Families aren't like they used to be. My father was in a family of 12 children, mother was in family of six children. In my family, we had four children and a fifth child died. My wife and I had three. My brother had three. My sister had four. The baby boomers average just a little under two children. The number of children left behind to maybe be future caregivers has diminished over the decades so that the availability of caregivers in the future is going to be a crisis situation.
Moderator: Are the nursing home workers and care givers subject to any regulation or licensing at all?
Ellison: They have to go through training. They have to pass background checks. They can't have any prior drug involvement, any felonies, or anything like that. They have to meet certain criteria with the nursing home. I know just not anybody can be hired.
Moderator: How much does MediCal (Medicaid) pay for your wife's care?
Ellison: My wife is on MediCal and MediCal pays -- right now it pays $96.60 a day for each MediCal person. Each patient is paid differently. My wife is now at age 62. She qualified on social security based on my earnings, which only amounts to about $300 a month. All but $35 of that goes to her care. We pay about $10 a day to the nursing home, and the nursing home takes that and reduces the MediCal payment about $86.00 a day. Any money she gets from any source goes to offset her care costs in the nursing home.
Moderator: Is it true that MediCal will seek reimbursement from your estate to offset the cost of your wife's care? How does that happen, and how do you feel about it?
Ellison: Every February I get a letter from the state reminding me that if I die before my wife, then the state will come back against our estate for her care. They'll come back and take it out of our estate if there is anything there to take out. Let's say I had an estate worth $500,000 and when she died her care would cost $250,000. They would take out $250,000 and leave the other to me. If she dies before I die, then the state will allow me to stay in my home. When I die they come back against my estate for her care. If there was anything left over after that, that would go to my children.
Moderator: So under that system that state will take the balance of your estate?
Ellison: Yes. That's what they send me. I've got that in my book verbatim. I put that statement in my book to show readers how it works and exactly how it's phrased. I try to provide a lot of information that people need to know that are going down this path we've been taking.
Moderator: What would you suggest for someone to prepare for long-term care?
Ellison: Everybody should look into long-term care insurance. In the book, I refer to a Consumer's Guide article. They put out an article on long-term care and it talked about who needed it and who doesn't. It's people like probably me. As example, when I put my wife in the nursing home, my brother and sister-in-law went with me. I showed them around and talked to them about the costs because I had to pay the first year up front. When they found out what it was going to cost me, the first thing they did was go home and take out long-term care insurance. A lot of people don't see a need for long-term care. When you get old, then it may be too late. You have to qualify for long-term care insurance. You can't qualify when you need it. It's like trying to buy fire insurance on your house after your house burned down. People have to look at possibility of long-term care, based upon type of work they perform, based upon their family history.
Moderator: What is required in order to "qualify" for long-term care insurance?
Ellison: To qualify for it, basically a person has to be relatively healthy. People can get long-term care insurance with some medical problems. I'm not sure what they are but I honestly can't answer that question with any authority. If you have a serious ailment, you're probably not going to qualify.
Moderator: Do you feel that genetic research may impede access to medical care for long-term needs?
Ellison: I've read about that and I've heard about the concern of this type of research that can have on the medical world and insurance industry, where insurance business might be able to screen people and refuse them medical insurance or any type of insurance products based upon genetic background check. To me, that sounds a little scary. I'm not that well-versed on it. It looks to me like it could be a major problem in the future.
Moderator: How has your experience with your wife changed you, and what has it taught you?
Ellison: It taught me you can't predict the future. There's no way of knowing what's going to happen tomorrow. She does not have long-term insurance. I look back now and think I should have considered that possibility. I just never visualized anything like this happening to her. Alzheimer's is something that never crossed my mind. I don't think people think much about Alzheimer's but it's out there and it's something that's got to be put into the mix when people start thinking about becoming elderly. Nearly 50% of people 85 and older have it.
Moderator: What sort of support system do you rely on?
Ellison: I might say I'm somewhat self-sufficient. I have friends that I talk with. I also play duplicate bridge. It's tournament type bridge. When my wife became ill, after she went in the nursing home, I had time on my hands. Many of the people I play bridge with -- it's amazing the number of people who have spouses who have Alzheimer's who have died already. I run into a lot of people on a daily basis that are also involved with Alzheimer's. I spend some time on the Internet. There's an Alzheimer's message board that I visit frequently and I talk to the various people who are, in many cases, just getting involved with Alzheimer's and looking for information. I try to help them or point them in the right direction. I try to be helpful in that area. It also gives me a certain amount of relief. The book has generated a lot of correspondence on the Internet. I have been talking to people who have read the book, people who have family members who have Alzheimer's. I think it's just involvement in the Alzheimer's community on a continuous basis.
Moderator: What's the most important piece of information you can offer someone who has just had a loved-one diagnosed with Alzheimer's?
Ellison: The first thing at any indication, I would contact my local Alzheimer's Association Chapter. These are located in every state except Wyoming. Some states have many chapters. They all have 800 numbers. You can call up and get the Alzheimer's Chapter nearest you. They can give you information and all aspects and things you can plan on, living will, powers of attorney, caregiver groups, support groups, et cetera.
Moderator: Is there a certain degree of denial surrounding Alzheimer's, among the family, that is?
Ellison: I was just corresponding with a woman who has just been diagnosed. Her family denies she has Alzheimer's even though she says the doctor says she has early stages. In many cases, every family has a different approach to it, not only the person who has Alzheimer's but family members themselves. They're all a bit different. Some handle it well and some don't.
The book can be reviewed and purchased there on my web site at www.aquariushousepress.com or call us at 1-800-258-8338
Moderator: Mr. Ellison, thank you for joining us.
Ellison: Well, thank you. I've enjoyed it.
The opinions expressed by Mr. Ellison are his and his alone. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
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