Dearest: My guest tonight, Sandy Braff, M.A., M.F.T., is a licensed individual, marriage and family therapist. Since 1989, she has voluntarily facilitated a weekly Alzheimer's Caregiver's Support Group for the San Diego Alzheimer's Association. As we are aging ourselves, we often find ourselves coping with our loved ones aging -- suffering from dementia or Alzheimer's disease and becoming the caregiver. Sandy is the co-author of "Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving" with Mary Rose Olenik. "You must be able to survive one emotional upheaval after another," says Sandy Braff. "Caregivers have been known to put their own lives on hold and become entirely devoted to caregiving - making this difficult role even harder, and often compromising their own health." Sandy Braff will show us that this needn't happen. Welcome to Power Surge, Sandy. We're very informal here. May we call you by your first name? Sandy Braff: Please do and thank you for inviting me to your chatroom. Dearest: It's my pleasure to have you. Thank you for coming :) Sandy, in the title of your book, what, exactly, is the "paradox" of Alzheimer's caregiving? Sandy Braff: There are many paradoxes when one is attempting to stay connected with a parent who is becoming a different person. So what happens when they're dealing with this paradox is that there's what I'd call a dearth of intimacy and a constant wanting to connect and letting go. A wanting to stay connected because of the history of the relationship and the deep attachment but because of the losses that occur and the anticipation of the losses, to move in and out of the relationship as you try to avoid the pain. So there are some paradoxes. One paradox is the scenario of the love and hate. I love you, I hate you. It's very common to hear that stated. I want to run away, I want to stay and take care of you. I wish you could be cured, and I want to see an end of suffering. There are many, many more paradoxes between desires and conflicts. Paradoxically when you face the reality of the situation, there's a different form of paradox. You become more compassionate and develop more connections. Dearest: I can only speak from a daughter's point of view, but it's very frustrating to watch one's parent who's always been vital and sharp lose their memories, their verbal skills -- from what you've said, it seems as though the actual "intimacy" of the relationship changes even without wanting it to and a new sort of relationship forms. Is that so? Sandy Braff: Yes, you're using the words "intimacy of the relationship" changes and everything about the illness is about change. The person you love changes, personality changes, mood changes. The changes in the brain that occur make the person unable to do or carry out the tasks of everyday living so there are cognitive changes, personality changes, connections because changes in the brain don't allow the loved one to understand what they're doing and how it affects you. The cognitive changes, the way a person thinks, reasons, makes judgements, all that changes. Those changes mean that the person with the illness can no longer can no longer carry on a reasonable lifestyle because they can no longer learn new behavior which ultimately means that you have to make all the changes because you're the only one who can. JaneS: My mother who lives in a different part of the state is caring for my dad with Alzheimer's and her mother who is 92 and has dementia. My mom understands that she needs time apart from them but doesn't know how to make space for herself. I'm working with my siblings to help her arrange for a paid caregiver, what else might I do for her? I recently spent almost 2 weeks with her and I believe I was an enormous source of comfort. Sandy Braff: In-home help is a great resource. Another wonderful resource could be for taking your father and grandmother to a daycare. Daycare provides a wonderful, more stimulating environment. They're in a similar peer group and your mother would get respite from the day. JaneS have you tried anything like that? JaneS: My mom has suggested that to my dad but he responded very negatively. He still wants to be Mr Macho in charge although that is an illusion at this point because he has become so reliant on her. But its difficult for her to make decisions against his will as that's a dramatic shift in their relationship. Sandy Braff: Jane, it might help you to buy the book because we discuss people who have these problems about going to a group and offer suggestions. Feel2young: Could you please touch on the importance of support groups for caregivers? I feel this is so important. Not just emotional help, but knowledge of the disease, and ways of finding physical help as well. Sandy Braff: I'm very glad that you suggested that I talk about support groups. One of the main themes of our book is to allow people to understand how essential it is to be in this environment. For one, you're with people who truly understand exactly what you're going through, who can offer suggestions and ideas of how to cope in different situations and where you can be educated and also be in a safe environment where you can say whatever is on your mind even if you're angry. You can yell, you can cry, you can let it all out because most people in that group will either have felt that way and will think. Guest198: I'm a 41 year old single woman living with my 80-year-old mother with moderate dementia. It took me a long time to adjust to being the parent to my parent, but now I think she's just adorable. However, she is a real homebody and not comfortable with anyone other than family. How do I get respite from that? Sandy Braff: There are many ideas in the book, with wonderful information in it. We make wonderful suggestions about how you can get respite. I can't stress enough how important it is for you to have a break. One thing you need to know is that sometimes it may actually be the caregiver who is feeling reluctant or guilty about bringing someone in and projecting that onto their loved one. I can assure you that your mother will adjust if you're kind and firm and bring someone in so that you can get help. No transition is easy. Education on the disease is so important. Dearest: The book is: Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving by Sandy Braff and Mary Rose Olenik (you can buy it on amazon.com and there are links on Power Surge to the book as well). PatC: My mother has been diagnosed with Alzheimer's. She and my father still live on their own and very strongly want to stay that way. My siblings and I are dreading the time when that is no longer possible. Any suggestion on how to make that transition when the time comes easier on all of us? Sandy Braff: Do they live in the same vicinity as your parents? PatC: Several of them do. I don't. Sandy Braff: So, one thing that may help is having a family meeting possibly with a counselor or a person familiar with the disease so that you can plan for the future so nothing comes as a shock. Right now, while your mother is in the early stages is the time to discuss legal documents such as durable power or attorney for health and finances and a living will which should be discussed with an elder law attorney familiar with Alzheimer's Disease. The reason for the meeting is to make sure that everyone's thoughts and goals are voiced and there's consensus about how the care is going to be given. The more discussion, the easier the transition, the more cooperation among family members. Guest198: We had someone come in to be with my mom and she hated the intrusion. Admittedly, it was hard for me to because it's my house, but I'm like my mom! We're private people, I guess. Sandy Braff: Guest, I think you need to be more clear about what you're willing to do for yourself. It is a difficult situation. Just try again with your mom in a few weeks. Have someone come in while you're there, have some coffee or tea together. Make it an informal tea party to make things easier. Dearest: Sandy, I read that statins, the cholesterol-lowering drugs, may also reduce the risk of developing Alzheimer's disease by as much as 39%. There's also a study, the Alzheimer's Disease Cooperative Study Group, that will begin a study to find out if statins can be used to actually treat Alzheimer's disease. Do you know anything about this? Sandy Braff: These studies do look very hopeful, unfortunately there's more research to be done. Many research articles I've read talk about the importance of watching your diet, avoiding high cholesterol foods. JaneS: Some families like mine find the concept of getting outside help or discussing family issues with an outsider to be wrong somehow. How can we overcome this? What about overcoming the bias on the part of the caregiver or other family members? Sandy Braff: The more isolated you allow yourself to be, the more difficult it will be to get help. If there was more time,we could discuss this in more detail, but there is information in the book and I'm going to suggest some websites that discuss some issues about family of Alzheimer's or elderly parents. Try getting info from websites about family meetings from www.caregiver.org. For parenting issues www.ec-online.net and www.alzoc.org. Dearest: Sandy, you say in "Staying Connected While Letting Go," that "it is important to seek a diagnosis if warning signs are present. One of the reasons is that some forms of dementia can be treated. Never assume that because your loved one is having these symptoms, he or she has Alzheimer's Disease." Sandy, what are the differences between dementia and Alzheimer's? Sandy Braff: Good question! Alzheimer's is a common form and cause of dementia. Dementia is a description of symptoms and behavior and it is not a disease. Alzheimer's is a disease. Some of the symptoms of dementia are: loss of cognitive or intellectual function, loss of social abilities, personality changes, memory loss, difficulty with abstract thinking, verbal skills, loss of judgement and there are more. Alzheimer's a progressive, degenerative disease. It starts with some of the dementia symptoms but eventually becomes more severe and irreversible mental impairment that interferes with the person's ability to take care of themselves and to talk or feed themselves. Dearest: Is Alzheimer's hereditary? Sandy Braff: It is believed that there is a hereditary component. There is some genetic component where the person has Alzheimer's that other family members will inherit the gene but it is not 100% certain. I don't want to scare anyone because there's a good chance that family members may not inherit Alzheimer's. In what they call familial Alzheimer's, which is an early onset form - before age 65, it is caused by genes on chromosomes 1, 14 and 21. It's not certain. They're doing a lot of research and testing to understand more about the role that genetics play. If people want to learn more about the genetics, there are some sites (and buy the book first). Email for more information at adear@alzheimers.org. Websites for information are www.alzheimers.org or www.nsgc.org. by Power Surge. All Rights Reserved.