Alzheimers

About 4 million people have Alzheimer's disease nationwide, one in 10 persons over 65 and nearly half of those over 85 has Alzheimer's. In Sedgwick County, 8,000 people suffer from the disorder that is a gradual deterioration in the functioning of the brain. KMUW's Carla Eccles talks with a medical professional and two caregivers about caring for Alzheimer's patients. At the Life Care Center in Wichita, Alzheimer's patients and other residents crowd around the piano and wheelchairs or lean against the walls. It's standing room only during this weekly sing-along. That is one thing that they seem to remember is the hymns in their Bible verses. They're real good with those type of things, singing along with you, remembering them. Desi Thompson is the director of Life Care's adult daycare program and runs the center's Alzheimer's support group. She says those with Alzheimer's disease don't always remember family members' names, but it goes beyond that.

Alzheimer's is more, it's more getting, it's more delusional. Like I may think you're my sister. I may ask the same question over 15,000 times a day because I forgot I asked it in the first place. The disease may also involve changes in emotions according to Dr. Connie Marsh, who is a psychiatrist and clinical assistant professor at the University of Kansas School of Medicine, Wichita. Be some mood swings, too irritable, perhaps the opposite of that, meaning a little too flatter depressed. And then gradually we'll see changes that then start to affect other areas of the brain, such as slowness and walking, inability to really do activities of daily living, such as grooming, bathing, and then there's a gradual deterioration to the point where the patient is usually bedfast. At the adult daycare, Desi Thompson keeps patients as active as possible, which helps stabilize their emotions. The daycare also gives the patient's caregiver a break.

Thompson says there's also a certain amount of denial surrounding Alzheimer's. There was a guy that came in and he was siding his wife up, or he was inquiring about the daycare. And you know, a lot of people come in and they don't know, you know, they don't know what's going on. They just know what's unusual. We were talking and I, you know, he was in denial that it may not be Alzheimer's dementia and she opened up her purse and took his underwear out and blew her nose and put it back. But denial can make eventual treatments more difficult. Dr. Marsh, who specializes in geriatric psychiatry says early detection is vitally important. This is a very gradual process, but even by the time the patient, the family, or the physician is aware of symptoms, that disease process has been happening in the brain probably for at least a decade or two. So the disease process is occurring in the brain when no one is aware of it. So our best efforts for this condition will be to target how do we detect it much earlier and secondly interrupt the process that is causing this slow deterioration in the brain.

A new drug called Memantine used in Germany for more than 10 years is showing signs of promise. Dr. Marsh says it may help severe Alzheimer's patients function better in their own grooming, which in turn helps the caregiver. In the meantime, Marsh says there are ways people can help delay the onset of symptoms. Although I've talked about the fact that someone who has it, it's happening in their brain and they may not be aware of it, we do believe that if you use your brain, you have a better capability of not, quote, losing it. It's the same old phrase, use it or lose it. And I think individuals who are continually trying to learn new skills, stay very active both physically as well as mentally, are involved with daily crossword puzzles, learn a foreign language. All of those things that can be done no matter what your age is, are using the brain capacity that you have.

And we do tend to think that that protects either from the process or for the progression of the progress of the illness. So that's definitely something that people can do. I have some pictures of my wife going back about 15 years. The Wayne Brotto is a widower of an Alzheimer's patient. In this picture is my wife Karen on our rabian horse at it end over. Karen died five years ago at the age of 62, just two days before their 40th anniversary. The Wayne says he and his wife love to ride horses, but she had a few bad falls which he says might have contributed to his wife's disease. She used to go out there and we'd ride in the timber, had quite a big round out there. We could ride on, she's always ridden. In fact, it may have been one of the contributing factors to our Alzheimer's in that over her lifetime.

She's had three serious brain traumas falling off or being thrown off of horses. For five years, Brotto took care of his wife most of the time at home with the help of family and nurses. As her illness worsened, he eventually enrolled her in the Alzheimer's unit at life care. Brotto still goes to the center's Alzheimer's support group meetings to help other caregivers cope. It's an awful feeling to watch an adult that has been very active, been very competent, has done many things, slowly deteriorate to where somebody has to do everything for them. And they revert back to where they were born and it's hard to watch. I wouldn't want anybody to have to go through it. I would like to think that if I stay with the support group and I think I'm going to stay reasonably active in the area, maybe I can help somebody else, I don't want to try.

Jesse Thompson says the group gives caregivers a chance to share concerns with other people familiar with some of the frustrations of living with the disease and to balance that with a good sense of humor. Because everything in their world, it may seem serious, real real serious to you, but you have to laugh about some things. I remember the first time I worked at an Alzheimer's unit and I didn't really know as much about Alzheimer's as I know now and this guy was going around asking everybody, is anybody seeing my wife Beth? I don't know her name. Anybody see my wife Beth and there's a little lady in the corner sitting there and she's going, I may be her as far as I know. It was funny there, but when you think back as much as I know now and I think back now and I'm like, oh man, that's really how scary it is. You don't, you just don't know. Thompson tries to help people see the disease from the patient's point of view. On her desk, she keeps a copy of thoughts pinned from the patient's perspective. This is a request from people with Alzheimer's and says, please be patient with me. My disease is beyond my control, except the way I am, I still have something to offer

you. Listen with and listen with me. For God's sake, if I have to take, say one thing, laugh, because if you don't laugh at some of this stuff I guarantee you, you will cry, you'll cry anyway, but find something that is funny about it. It may be that 30-second reaction or something that a few years ago would have really been a real dumb thing. It was funny now. It's not dumb. You know, there are a person, a treat them like that, and enjoy what time you got. I am not less of a person because I have Alzheimer's disease. Remember my past, remind me of my successes, values, and worth. Remember my present, let me do what I can do, break down activities into steps I can handle. I respond to encouragement. Remember my future. I need hope for tomorrow. Pray for me. Your persistence shows true compassion. Carla Eccles, F-89 News. In a West Side nursing home in Wichita, Queen Aster Ware, a 74-year-old grandmother, sits

propped up in a wheelchair in a room, waiting for her younger sister, Joan, to braid her thick silver hair. Joan has been Queen's primary caretaker more than 40 years. Ms. Queenie, you want me to comb your hair before we go to the doctor? Huh? Yeah. Yeah. You could take your fingers out of your mouth, you know, and be a good girl today. You going to do that at the doctor's office? No. Oh, you're not. What's going to keep you from doing it? Originally from Oklahoma, Joan moved to Wichita after college to look after her older sister in 1958. Queen had had a stroke and later recovered. Joan worked in a hospital lab as a medical technologist for years. And then retired when her sister became chronically ill. In 1996, Queen had another stroke. Joan found her on the floor in the home they shared.

This time, the stroke severely weakened her muscles. Since then, Queen hasn't been able to stand, walk, or feed herself. After, you know, we couldn't get her to stand. I knew I could not handle her. And seven years ago, I was only 59. And a lot of people say, well, that's young, but I knew that if this lasted for a long time, I would wear out, wear down, and she'd have nobody to run and see her about her. So the best thing for me to do is to put in a nursing home and come here every day if I had to, because I couldn't see breaking my body down, and she had nobody. Queen has given Joan legal permission to look after her affairs with a document called Power of Attorney. After an extended stay in the hospital and rehab center, Queen was transferred here to a nursing facility. Although she occasionally misses the house where she spent so many years, Queen now calls the 110-bed facility home.

Dr. Donna Sweet of the KU School of Medicine, Wichita says, making decisions early about long-term care will help relieve anxiety later. Try and get your parents, your loved ones, yourselves. In a position where you have a durable power of attorney for health care, where you already have a living well, where you've made someone aware of your wishes, and then, quite frankly, try and be honest about the fact that there may be a time when you won't be able to handle things. So make sure that you have perhaps looked at long-term care facilities. Nursing home care runs just about $5,000 a month, and even if you've got millions, you can soon be broke. Although social and rehabilitation services pays a portion of Queen's expenses, Jones still has to juggle the budget. I have $30 or not out of Queen's finances for the month to take care of her needs, all of her personal needs, her clothing, and insurances, and all of that, which doesn't begin to touch it.

So, most of the time I'm putting half of my money into her care too, and it gets kind of rough. Make it through. People of means can generally handle it for a while, but money runs out, nursing facilities are quite expensive. Not just sweet. Once one has used the bulk of resources, you are eligible for state Medicaid programs. Medicare does not pay for a long-term simply maintenance intermediate care, that's something many people don't understand. See, other reason that, if indeed one is thinking about this early enough, and long-term care insurance is available, it is at least one of the reasons why it's not available. It's actually pretty good in many instances, so they really ought to be looking at a long-term care policy while they can still get it. Jones is grateful that Queen's business affairs were taking care of before she became chronically ill. If they get sick, and they stay sick a long time, then that will is only for death, and they have nobody is taking care of that person's business form, and anything can happen then.

She had the experience that helped her deal with her sister's affairs. She had power of attorney and was executor of her mother's estate. She says her attorney gave her legal advice and drafted the necessary documents. I found a lawyer to be helpful, and especially the wording, because the wording can mean two things. What we think sounds like it's okay with us, it may not be when it comes to the law. Tom Docking is an attorney with Moore's Lang Evans-Brock & Kennedy Law firm in Wichita. He says it's important to plan ahead while a person is still able to make decisions. You don't want to wait until it's too late, then after it's too late, then you have to get the court involved in setting up a conservatorship, some kind of an arrangement whereby the court can name somebody, but you have to go through a court proceeding in order to certify that the person is not capable of making these decisions for him or herself. Not only power of attorney, Docking says preparing a will is also important, whether you're sick or not.

And anybody should do this. I mean, many people think, well, gee, I don't own a lot of property and so forth, but there are consequences to that. I mean, the law will direct where these things go and who takes care of whom, and most people want to have a say in those things, and to do that, you need a will. In considering end of life decisions, Dr. Sweet says being specific about your wishes really helps ease the burden of loved ones. Do you want a feeding tube? Do you want to be maintained on a ventilator if it comes to that? Do you want to be resuscitated if there's really no hope for returning you to baseline quality of life? Most people don't want any of those things, but if they don't think about saying it, sometimes things happen, and then again, it's much easier if mom or dad says to kids, you know, if this happens, let's be honest, I really don't want you to do this, this or this. And that frees up the person who has to make those difficult decisions right at the moment because they have talked about it. They have communicated their wishes, and then there's not the guilt of, well, you know, I pulled the plug on mom, and nobody wants that.

A living will lets people know your end of life wishes. There's a form that's been authorized under Kansas law that has legal effect. It's attorney Tom Docking. If you follow the terms of the form that basically says, if I'm in the process of dying and the doctors have certified that I'm not going to recover, I only want certain kinds of comfort care provided. And while taking care of others, Dr. Sweet advises caregivers to remember themselves. Take care of yourself. I think that's the chief warning to people who are caring for ill loved ones, elderly loved ones, people that they're responsible for because again, it is very true. You cannot take good care of anybody unless you're in good shape yourself. So make sure in any way possible that you have some sort of a support system through your church, through your family, through your children, some way that you can get away for quality time yourself and so that you don't get this overwhelming anger, guilt, resentment, bitterness that can occur.

As she finishes braiding Queen's hair, Joan smiles. Although she spends a lot of time at the nursing home, she also takes a class at the Y and spends time with her daughters and grandson. She says asking God for direction and keeping a positive attitude has helped keep her strong. That's me. That's just me. That's part of my personality. It's not to worry about things, worry and don't get you anywhere and then to just keep plugging away, I know you can get through eventually.