SPRY–Setting Priorities for Retirement Years–is a nonprofit foundation that develops research and education programs to help older adults plan for a healthy and financially secure future. The website links consumers to national health resources.
Substance Abuse and Mental Health Services Administration (SAMHSA)
Address: 1 Choke Cherry Rd. Rockville MD 20850
Telephone: 1-800-729-6686 (toll-free) (National Clearinghouse for Alcohol and Drug Information-NCADI)
SAMHSA, part of the Federal Government, is responsible for improving the quality and availability of prevention, treatment, and rehabilitation services in order to reduce the illness, death, disability, and cost resulting from substance abuse and mental illness. Spanish language resources are available from NCADI.
The Consumer Product Safety Commission (CPSC) is an independent Federal regulatory agency working to ensure the safety of consumer products, such as toys, cribs, power tools, and household chemicals. CPSC provides a variety of publications and makes referrals.
U.S. Department of Housing and Urban Development
Address: 451 Seventh Street, SW Washington DC 20410
The Department of Housing and Urban Development supports community development through home ownership plans, and helps increase access to affordable housing. HUD provides information for seniors about how to remain independent and stay in your home, finding an apartment, staying active and protecting yourself against fraud. HUD also administers housing counselors for seniors in need.
United States Postal Inspection Service (USPS)
Address: Criminal Investigations Service Center ATTN: MAIL FRAUD 222 South Rverside Plaza, Suite 1250 Chicago IL 60606
United Way is a philanthropic organization providing support for community programs. Contact the United Way to find local chapters linking people with resources such as dental and health services for low-income people or to volunteer for service programs in the community.
University of Maryland Center on Aging
Address: 2367 HHP Building College Park MD 20742-2611
VEDA is a nonprofit organization providing information and support for people with disorders such as Meniere's disease, BPPV, and labyrinthitis. The Association provides lists of clinics and vestibular specialists and offers information on disorders of the inner ear and management and diagnosis of dizzy spells. Publications are available on recent advances, rehabilitation, and support therapy.
Vision Council of America (VCA)/Better Vision Institute (BVI)
Address: 1700 Diagonal Road, Suite 500 Alexandria VA 22314
VCA provides news and information on vision health and care. Contact the Institute for facts on the detection, treatment, and prevention of eye diseases. Publications include fact sheets on cataracts, nutrition, care of eyeglasses, diabetes, and vision care.
Visiting Nurse Associations of America (VNAA)
Address: 99 Summer St., Suite 1700 Boston MA 02110
VNAA is an association of nonprofit, community-based home health care providers. Visiting nurses offer quality in-home medical care including physical, speech, and occupational therapy; social services; and nutritional counseling. Local agencies operate adult day-care centers, wellness clinics, hospices, and meals-on-wheels programs. A fact sheet and caregiver's handbook are available.
Volunteers of America is a national, nonprofit, spiritually-based organization providing local human service programs and opportunities for individual community involvement. Specific programs include housing, assisted living, meals-on-wheels, transportation and health care services.
WSF is a not-for-profit association of spousal caregivers. It offers support to the wives, husbands, and partners of chronically ill or disabled people. The Foundation has lists of support groups nationwide and sponsors recreational respite opportunities.
Women’s Health Initiative
Address: 2 Rockledge Centre, Suite 8093, MS 7935 Bethesda MD 20892
The National Institutes of Health (NIH) established the Women's Health Initiative (WHI) in 1991 to address the most common causes of death, disability, and impaired quality of life in postmenopausal women. The WHI addresses cardiovascular disease, cancer, and osteoporosis. The three major components of the WHI were a randomized controlled clinical trial of promising but unproven approaches to prevention, an observational study to identify predictors of disease, and a study of community approaches to developing healthful behaviors. The WHI website provides information regarding findings.
YMCA is a membership organization providing physical fitness and health programs. Local YMCAs nationwide design Active Older Adult programs to meet the needs of older members, provide volunteer opportunities for senior citizens, and offer intergenerational programs.
Young Women's Christian Association (YWCA)
Address: 1015 18th St., NW, Suite 1100 Washington DC 20036
YWCA is a membership organization providing health, fitness, and community services for women. Educational workshops, recreational activities, and counseling services are available. ENCORE programs for women after breast cancer surgery combine group discussion with exercise to promote recovery. Informational brochures are available.
If you think there is a welfare problem at a farm near you, the correct course of action is to call your local Animal Health Office (AHO). Contact details for Animal Health Offices and Local Authorities are available here.
If you have queries about Defra's work but not about animal welfare please contact the Defra Helpline.
Website Queries
If you have feedback on this website or find a broken link please contact the Animal Health and Welfare Webmaster at: ecomms@defra.gsi.gov.uk.
Our toll-free telephone number is: (877) 394-CARE (2273). If you are in the Champaign, Illinois area, our local telephone number is (217) 244-CARE (2273).
Animal rescue and sanctuary for both domestic and wildlife. Room permitting anything taken in and rehomed or kept . Opening a Wildlife Education Centre with People's Millions funding if we get through the finals on 14th November 2006.
We are a small not profit rescue, we have a no kill policy, all dogs are vaxed, neuter, chipped, wormed and flead before leaving us, and homechecks are done.
All of our dogs are temprement tested to the best of our ability before they are rehomed. They are neutered where appropriate. All dogs have at least their primary vaccination, wormed when neccessary and micro-chipped before leaving us. All potential homes are subject to a homecheck before the dogs are adopted.
Beech Tree Bunnies is a Rabbit and Guinea Pig rescue centre, based near Market Harborough, Leicestershire, UK. We have under cover facilities for 30 pets and outdoor retirement areas for several more. We started in January 2002 with five rabbits and one Guinea Pig and just grew from there. We are totally self funded, helped by volunteers, and raising money in various ways from Stamp collecting, holding stalls at the local boot sale and Market, selling plants, boarding pets while people are on holiday. We try not to turn down any pets, unless we are absolutely full and those that can’t be re-homed for any reason, just stay on in our retirement area.
The Bolenowe Animal Sanctuary is a home to over 85 rescued horses, ponies and donkeys who will remain at the sanctuary for the rest of their lives. Reg. charity: 296673.
BAWA helps rehabilitate and rehome dogs, cats and small animals from their Centre as well as directly from home. BAWA runs a vet help scheme and promotes animal welfare.
Boxer Dog Rescue are based in the North of England, we are dedicated to helping boxers in need. All of our dogs are vaccinated, neutered, microchipped, wormed and deflead before rehoming, we require home visits to be carried out after filling in an interest form. We do not act on a first come first served basis, we assess all dogs to match each individual family.
By: DramaQueen:::;Death is inevitable, yet the loss of a close friend or family member always showers us with a range of emotions. One day we might desperately try to avoid the pain, anxiety and feelings of helplessness we feel when a loved one dies. Other days, we feel like life has returned to normal—at least until we realize that our life has changed irrevocably. Despite the gamut of emotions we feel, grieving for a loved one helps us cope and heal. The intense, heart-breaking anguish indicates that a deep connection has been severed. Without a doubt, grieving is painful. But it is also necessary. Going forward doesn’t mean forgetting about the loved one who died. Enjoying life again doesn’t imply that the person is no longer missed. Piecing together your shattered emotions doesn’t mean you, somehow, betray a friend or family member. It simply means that your grief has run its course. While no single pathway through grief exists, people do share common responses. In 1969, psychiatrist Elisabeth Kübler-Ross introduced what became known as the “five stages of grief,” which represent feelings of those who have faced death and tragedy.1 Based on her years of working with terminal cancer patients, Kübler-Ross proposed the following pattern of phases many people experience:
Denial: “This can’t be happening to me.”
Anger: “Why is this happening? Who is to blame?”
Bargaining: “Make this not happen, and in return I will ____.”
Depression: “I’m too sad to do anything.”
Acceptance: “I’m at peace with what has happened.” Although these are common responses to loss, there is no structure or timetable for the grieving process. That said, understanding grief and its common symptoms are helpful when grieving. Recognizing the difference between trauma and depression is also beneficial. Besides understanding how stress can take a toll on us physically, emotionally and spiritually, we need to understand the practical guidelines to ease the process. These include taking care of our bodies, spending time with others and reaching out to the church community. Finally, there will come a time when someone close to us experiences a significant loss. Knowing how to respond to a grieving friend is a good first step in acting as a reliable companion. The death of a loved one is a shattering experience with far-reaching implications. As difficult as the loss may be, it is possible to move forward with hope for the future. Grief is a journey, often perilous and without clear direction," writes author Molly Fumia. "The experience of grieving cannot be ordered or categorized, hurried or controlled, pushed aside or ignored indefinitely. It is inevitable as breathing, as change, as love. It may be postponed, but it will not be denied."1 Fumia says it well. When it comes to grieving the death of a loved one, there are no linear patterns, no "normal" reactions, no formulas to follow. The word "grief" is derived from the French word "grève," meaning a heavy burden. Indeed, the physical, emotional, psychological and spiritual implications can be overwhelming. While grief is an expected response to a significant loss, the unfamiliar emotions that arise can lead to feelings of helplessness, fear and isolation. Following a death, everyone works through these stresses differently. Some are instantly devastated; others feel numb and disconnected. Some withdraw socially, while others reach out for support. What's more, just when the initial shock begins to subside, a deeper sense of reality and despair set in. Those who grieve may need to learn new skills, adopt different habits and adjust to daily life without the physical presence of the person who died. Although grieving is an individual experience, there are symptoms many people share after suffering personal loss:
Feels physically drained
Can’t sleep at night
Forgetful and unable to think clearly
Noticeable change in appetite
Physical distress such as chest pains, headaches or nausea
Stays extremely busy to avoid thinking about his or her grief
Eats, drinks watches television, etc. excessively
Participates in harmful activities
Senses or dreams about the deceased
Becomes withdrawn, lonely and apathetic
Frequent sighing and crying
Each person sets his or her own pace when grieving. There will be ups and downs, moments of relief followed by moments of anguish. The first few days after someone dies are generally the most intense, marked by chaos, strong emotions and a "dreamlike" sensation. Over time, a host of emotions may emerge. From guilt to remorse to anger, reactions vary from person to person. It's not uncommon for grieving loved ones to ask questions like "Why did this happen," "Where was God," or "Why didn't the doctors find the cancer sooner?" Among those mourning a death, some find the pain diminishes within weeks or months. They arrive at a place of acceptance, peace and hope for the future. They reminisce about their deceased loved one instead of feeling consumed by memories. For others, the healing process persists and it is difficult to enjoy a reasonable quality of life. Everyday events and significant life markers are painful reminders of what could have been. If debilitating symptoms continue longer than six months, we suggest seeking professional help. A Christian counselor or therapist can help you release the emotions you may have stored up inside. (Call Focus on the Family at 1-800-A-Family; ask for the counseling department. We can refer you to someone in your area who can help you through this difficult time.) The intensity of grief may relate to the following factors:
Whether the death was sudden or expected
Your feelings about the person who died
Your personality, family background, coping style and life experience
Your belief system and view on death
How those around you react and support you
The grieving process can be long and isolating, yet it's crucial to accept support rather than grieve alone. Talking about grief is an essential part of healing. Receiving reassurance and feeling understood will help make the recovery process more complete during one of life's most challenging times. After a loved one dies, those who grieve may find it difficult to function in everyday situations. Lingering emotional turmoil, a sense of shock and social withdrawal are painful but natural reactions. Despite these expected symptoms, is it possible to become “stuck” in grief? What if the loss prompts thoughts of self-harm or even suicide? And how can trauma affect the healing process? Symptoms of grief, depression and trauma can resemble one another. In order to respond to these symptoms appropriately and move on with life, it is crucial to understand the differences.
When Grief Becomes Clinical Depression
It’s not unusual for those who grieve to feel despondent, empty and anxious. Grief encompasses different emotions for different people, and it takes time to adjust to the loss and any accompanying changes. Sometimes, though, the depressive state doesn’t diminish over time and continues to disrupt everyday life. This may be an indicator of a depressive disorder. According to the American Cancer Society, about one in five bereaved people will develop major depression.1 It is difficult to predict whose grief will or won’t turn into depression following the death of a loved one. However, the following risk factors may increase the likelihood:
History of depression
Little previous experience with death
No support network
Intense depressive reactions early in the grieving process
Prior issues with alcohol or drug abuse
It is possible to grieve without being depressed. That said, there is a difference between the sadness of grief and the unrelenting numbness of depression. Here are signs indicating that a grieving person may also be depressed:
Shows symptoms of grief for four or more months with no sign of improvement
Prolonged or severe inability to function at home, work and/or school
Stays in bed all day, doing nothing
Thinks of suicide and/or has a preoccupation with death
Speaks and moves slowly
Hallucinates, which may or may not relate to the deceased
Feels worthless
If symptoms persist—and especially if suicidal thoughts occur—it is imperative to reach out to a family doctor, counselor or pastor. Those with depression will not simply “snap out of it.” However, depression is highly treatable, and with competent care a healthy life can be restored.
When Trauma Blocks Grief
Losing a loved one in a sudden or unexpected way—a car accident, heart attack, murder or suicide—may result in a traumatic reaction that hinders the grieving process. This sense of shock can also occur when the death is expected, as in the case of a long illness. If a person is run down psychologically, suffers from anxiety or depression or has endured previous traumatic experiences, it’s more difficult to handle another setback. As a result, additional grief symptoms can be unbearable. In order to cope, the traumatized individual may attempt to avoid grieving altogether. The NationalCenter for Posttraumatic Stress Disorder highlights broad types of symptoms that differentiate trauma from grief:2
Re-experiencing Symptoms: Mentally replays the trauma while awake or asleep
Avoidance Symptoms: Avoids trauma-related activities, places, thoughts or feelings
Numbing Symptoms: Loss of emotions, especially positive ones
Arousal Symptoms: Difficulty concentrating and sleeping, and a heightened sense of being on guard
Over time, if symptoms continue to influence life at work and home, counseling is advised. In addition to support groups, treatments that are both comforting and effective are available. Grieving the loss may be painful, but it is necessary to allow healing to occur. When someone we love is grieving the death of a friend of family member, it's a challenge to know what to do. We want to say the right thing, show support and ultimately help in the healing process. Yet all too often, we end up awkwardly offering advice, sputtering a spiritual rationalization or avoiding the situation altogether. Sara Alcoran can relate. She remembers the early morning phone call, the immediate sense of dread, the sorrow in her husband’s voice when he said, "Dad is gone." She remembers hastily packing up her infant daughter and speeding to the fire station where Linus worked. "When I saw him, all I could do was hug him and cry," says Sara, a 30-year-old stay-at-home mom. "I had no idea what to say." Like Sara, all of us try to be effective comforters but may find ourselves coming up short. Still, there are specific ways we can respond when those we love lose someone close to them.
Acknowledging the Loss
In an instant, the death of a loved one turns life upside-down. Emotions are piqued and responsibilities are overwhelming, making it tough to know when to reach out and when to give space. "I believe it is more helpful to acknowledge the loss," says Ann Kihara, a licensed marriage and family counselor in Pacific Grove, Cali. "You can even simply say, 'I'm so sorry for your loss.' " Although the initial contact may feel nerve wracking, take a first step by promptly making a call, writing a letter or paying a visit. Kihara cites other explicit do's and don'ts when standing alongside someone in pain: "It's unhelpful, even callous, to say things like, 'This is God's will,' 'They would not want you to cry,' or 'They are in a better place.'" Kihara reasons, "We cannot presume to know the will of God nor the emotional state of our loved one who is grieving." Instead, here's what you can do: Be there to listen. "It's always tempting to give advice, but don't," Kihara says. True empathy, encouragement and compassion will help those going through a difficult time. Encourage professional help if necessary. If you feel your loved one is unable to cope alone, gently recommend that he or she seek professional help. Providing a list of area grief counselors may expedite the process. State specifically how you're able to help. Offer to prepare a meal, provide a ride, or help clean and sort through old items. Be sensitive to your friend's feelings and proactive when it comes to meeting needs. Remind your loved one to take time out to rest, and to hold off on any major life decisions. It is undoubtedly draining to adjust to a loss and this impairs the ability to think clearly and make decisions. Reach out when your friend most misses a loved one. "Holidays and anniversaries will often trigger the grief response—even many years later," says Kihara. "Those are good times to be extra supportive and loving." When it comes to helping a loved one cope with loss, Renee Mahdavi knows what it's like to be on the receiving end. After experiencing several miscarriages, Renee acknowledges the importance of validating the loss itself. "I think the most valuable support we can possibly offer is to be there—just be there—and be willing to not 'fill the space' with our words," says Renee. "There are few things more powerful than knowing we are loved and supported through the valleys of life."
In Australia contact either Lifeline on 13 11 14 or Kids Help Line (if you are under 18 years old) on 1800 55 1800.
New South Wales
Department of Gaming and Racing http://www.dgr.nsw.gov.au/ Go to the "Help for Problem Gamblers" tab for links to NSW resources for problem gambling. Most resources are in the form of downloadable Adobe Acrobat Files.
Victoria
Gambler's Help Victoria http://www.gspot.org.au/ This site provides a useful range of links, information and contacts.
Depression Many problem gamblers are dealing with issues of depression, grief and loss. These web sites provide general information about depression and its treatment. You are advised to discuss issues of depression with a qualified health professional or counsellor. Beyond Blue is the national initiative on depression. It provides an excellent range of self help resources as well as links to a great range of mental health sites. http://www.beyondblue.org.au/Moodgym is a web based cognitive behavioural program aimed to help users deal with depression. It is free although it does require uses to register with the site. The site is a research project of the AustralianNationalUniversity. http://www.moodgym.anu.edu.au/The Black Dog Institute is an educational, research and clinical facility offering specialist expertise in mood disorders - a range of disorders that include depression and Bipolar Disorder. The site includes useful information and worksheets. http://www.blackdoginstitute.org.au/CarersCarers Australia provides help and support for carers. A significant proportion of clients at our service have being involved in caring for a spouse or child. http://www.carersaustralia.com.au/Relaxation / MeditationThe Mind/Body Medical Institute has an excellent site which provides information about stress management and the Relaxation Response. The Institute is continuously researching effective stress management techniques. The Institute is based at the HarvardUniversityMedicalSchool. http://www.mbmi.org/home/
3. What can I really do from far away? I don’t feel comfortable just jumping in.
Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. Long-distance caregivers can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some long-distance caregivers help a parent pay for care, while others step in to manage finances. Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.
Free Information Available from NIA
NIA has many free publications including the popular Age Pages—informative fact sheets for older people. There are over 40 titles in the series, many of which are available in Spanish. The Resources section of this booklet has information on how to contact NIA. Long-distance caregivers might find the following titles of particular interest:
• Home Safety for People with Alzheimer’s Disease • Good Nutrition: It’s a Way of Life • Older Drivers • Caregiver Guide: Tips for Caregivers of People With Alzheimer’s Disease • Long-Term Care: Choosing the Right Place
Some Good Ideas
Know what you need to know. Experienced caregivers recommend that you learn as much as you can about your parent’s illness and treatment. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in disease management. It can also make talking with the doctor easier. Learn as much as you can about the resources available. Make sure at least one family member has written permission to receive medical and financial information. Try putting together a notebook, or something similar, that includes all the vital information about health care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers.
Plan your visits. When visiting your parent, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your parent ahead of time and finding out what he or she would like to do. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to go to the mall or to visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother’s physician? Decide on the priorities and leave other tasks to another visit.
Remember to actually spend time visiting with your family member. Try to make time to do things unrelated to being a caregiver. Maybe you could rent a movie to watch with your parents, or visit with old friends or other family members. Perhaps your aunt or uncle would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone.
Get in touch and stay in touch. Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff to get up-to-date information about a parent’s health and progress. If your parent is in a nursing home, you can request occasional teleconferences with the facility’s staff. Some families schedule conference calls so several relatives can participate in one conversation. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. The human touch is important too. Try to find people in your parent’s community who can be your eyes and ears and provide a realistic view of what is going on. In some cases, this will be your other parent.
Help your parent stay in contact. For one family, having a private phone line installed in their father’s nursing home room allowed him to stay in touch. For another family, giving the grandmother a cell phone (and then teaching her to use it) gave everyone some peace of mind. You can program telephone numbers (such as doctors’, neighbors’, and your own) into your parent’s phone so that he or she can speed-dial contacts. Such simple strategies can be a lifeline for you and your parent. But be prepared—you may find you are inundated with calls from your parent. It’s good to think in advance about a workable approach for coping with numerous calls.
Get a phone book, either hardcopy or online, that lists resources in your parent’s neighborhood. Having a copy of the phone book for your parent’s city or town can be really helpful. The “Blue Pages” can provide an easy guide to State and local services available in your parent’s hometown.
4. How can my family decide who does what? My brother lives closest to our grandmother, but he’s uncomfortable coordinating her health care.
Be sure to talk with other family members and decide who will be responsible for which tasks. Think about your schedules and how to adapt them to give respite to a primary caregiver or to coordinate holiday and vacation times. One family found that it worked to have the long-distance caregiver come to town while the primary caregiver was on a family vacation. And remember, if you aren’t the primary caregiver, offering appreciation, reassurance, and positive feedback is also a contribution.
Know Your Strengths/Set Your Limits If you decide to work as a family team, it makes sense to agree in advance how your skills can complement one another. Ideally, each of you will be able to take on tasks best suited to each person’s skills or interests. For example, who is available to help Mom get to the grocery store each week? Who can help Dad organize his move to an assisted living facility? After making these kinds of decisions, remember that over time responsibilities may need to be revised to reflect changes in the situation or your parent’s needs. Be realistic about how much you can do and what you are willing to do. When thinking about your strengths, consider what you are particularly good at and how that skill might help in the current situation:
Are you best on the phone, finding information, keeping people up-to-date on changing conditions, and offering cheer?
Are you good at supervising and leading others?
Are you comfortable speaking with medical staff and interpreting what they say to others?
Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
When reflecting on your limits, consider:
How often, both mentally and financially, can you afford to travel?
Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—and to respect your parent’s autonomy?
Can you be both calm and assertive when communicating from a distance?
How will your decision to take on care responsibilities affect the rest of your family and your work?
5. Are there things I can do that will help me feel less frustrated? What can I do to take care of myself?
Feeling frustrated and angry with everyone, from your parent to his or her doctors, is a common caregiving experience. It can be hard to acknowledge that you feel this way, but try not to criticize yourself even more. Caregiving, especially from a distance, is likely to bring out a full range of human emotions, both positive and negative. If you feel angry, it could be a sign that you are overwhelmed or that you are trying to do too much. If you can, give yourself a break: Take a walk, talk with your friends, get some sleep, join a support group—try to do something for yourself. Consider joining a caregiver support group, either in your own community or online. Meeting other caregivers can relieve your sense of isolation and will give you a chance to exchange stories and ideas. By focusing on what you can do, you may be able to free yourself from some of the worry and focus on being supportive and loving.
Most caregivers report feeling guilty about almost everything—about not being closer, not doing enough, not having enough time. Worrying about being able to afford to take time off from work or the cost of travel can increase frustration. As one caregiver noted, “When I was growing up, my mother and I weren’t very close. As an adult, I ended up across the country. When Mom got sick, my sister took on most of the caregiving. Because I’m hours away, I couldn’t be at Mom’s bedside regularly but I did call her more often. I worked it out with my sister so I took care of handling Mom’s monthly bills. I did visit several times and always encouraged my sister to take a break from caregiving while I was there. Now that Mom’s gone, I’m dealing with the estate, closing out accounts, and deciding what to do with the house. We all do what we can.”
6. What is a geriatric care manager and how can I find one? A friend of mine thought that having a professional “on the scene” to help my dad would take some of the pressure off me.
Gina lived in Phoenix, and her father, Bill, lived alone in an LA apartment. She visited him several times each year. When she began to notice that Bill was starting to have problems managing some things on his own, Gina called the Area Agency on Aging. The Agency staff helped her to set up daily meal delivery and a home health aide for Bill. A few months later, Bill fainted in church and was taken to a local hospital. He was there for a day before someone was able to track Gina down. The hospital discharge planner wanted Gina to come in person to discuss what her father needed—but Gina couldn’t get away immediately. Her husband suggested hiring a geriatric care manager, someone based in LA who could keep tabs on Bill more efficiently than Gina. Now a care manager visits Bill once a month and calls Gina with updates and recommendations.
Professional care managers are usually licensed nursing or social work professionals who specialize in geriatrics. Some families hire a geriatric care manager to evaluate and assess a parent’s needs and to coordinate care through community resources. The cost of an initial evaluation varies and may be expensive, but geriatric care managers can offer a useful service. They are a sort of “professional relative” to help you and your family to identify needs and how to meet them. These professionals can also be helpful in leading family discussions about sensitive subjects.
When interviewing a geriatric care manager, you might want to ask:
Are you a licensed geriatric care manager?
Are you a member of the National Association of Professional Geriatric Care Managers?
How long have you been providing care management services?
Are you available for emergencies?
Does your company also provide home care services?
How will you communicate information to me?
What are your fees? Will you provide them in writing prior to starting services?
Can you provide references?
The National Association of Professional Geriatric Care Managers can help you find a care manager near your family member’s community. You can also call or write the Eldercare Locator for recommendations. In some cases, local chapters of the Alzheimer’s Association may be able to recommend geriatric care managers who have assisted other families. The Resources section of this booklet has information on how to contact these organizations.
8. How can I make the most of a visit with my parent’s doctor? I don’t want to waste the doctor’s time.
If you go with your parent to see the doctor, here are a few tips that will help you be an ally and advocate:
Bring a prioritized list of questions and take notes on what the doctor recommends. Both can be helpful later, either to give information to the primary caregiver, or to remind your parent what the doctor said.
Before the appointment, ask your parent, the primary caregiver, and your siblings if they have any questions or concerns they would like you to bring up.
Bring a list of ALL medications your parent is taking, both prescription and over-the-counter, and include dosage and schedule (if your parent sees several different doctors one may not necessarily know what another has prescribed).
When the doctor asks a question, do not answer for your parent unless you have been asked to do so. Always talk to the doctor and to your parent.
Respect your parent’s privacy and leave the room when necessary.
Ask the doctor if she or he can recommend community resources that might be helpful.
Larger medical practices and hospitals may have a social worker on staff. Ask to speak with the social worker. She or he may have valuable information about community resources.
NIA has a free booklet called Talking with Your Doctor: A Guide for Older People that provides helpful information about doctor/patient communication. It includes hints on getting ready for a doctor’s appointment, making health care decisions, and talking about sensitive subjects. The Resources section of this booklet has information on getting a copy of this guide.
9. How on earth can my parents afford everything they need? They saved money for retirement, but the cost of their health care is really high.
You are not alone in worrying about how much everything costs. Health care expenses can be crushing, even for middleclass families who thought they had saved enough. Your parents may be eligible for some health care benefits. People on fixed incomes who have limited resources may qualify for Medicaid, a program of the Centers for Medicare and Medicaid Services (CMS), a Federal agency. CMS covers the costs of health care for people of all ages who meet income requirements and who are disabled. Because the guidelines change often, you should check with CMS regularly.
Medicare offers insurance for prescription drugs. For information about this coverage, visit www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227).
The State Health Insurance Assistance Program (SHIP) is a national program offering one-on-one counseling and assistance to people and their families on Medicare. SHIPs provide free counseling and assistance to Medicare beneficiaries on a wide range of Medicare, Medicaid, and Medigap matters. To find your State program, visit www.shipusa.org.
If prescription medications cost too much, talk to the doctor about the possibility of prescribing a less expensive medication. The Partnership for Prescription Assistance can provide a list of patient assistance programs supported by pharmaceutical companies. The Resources section of this booklet has information on how to contact these organizations.
10. What kinds of documents do we need? It sounds like caregiving requires a lot of paperwork.
Effective caregiving depends on keeping a great deal of information in order and up-to-date. Often, long-distance caregivers will need to have information about a parent’s personal, health, financial, and legal records. If you have ever tried to gather and organize your own personal information, you know what a chore it can be. Gathering and organizing this information from far away can seem even more challenging. Maintaining up-to-date information about your parent’s health and medical care, as well as finances, home ownership, and other legal issues, lets you get a handle on what is going on, and allows you to respond quickly if there is a crisis.
If you do not see your parent often, one visit may not be enough time for you to get all the paperwork organized. Instead, try to focus on gathering the essentials first; you can fill in the blanks as you go along. You might begin by talking to your parent and his or her primary caregiver about the kinds of records that need to be pulled together. If a primary caregiver is already on the scene, chances are that some of the information has already been assembled. Talk about any missing information or documentation and how you might help to organize the records.
Your parents may be reluctant to share personal information with you. Explain that you are not trying to invade their privacy or take over their personal lives—you are only trying to assemble what they (and you) will need in the event of an emergency. Assure them that you will respect their privacy and keep your promise. If your parents are still uncomfortable, ask if they would be willing to work with an attorney (some lawyers specialize in elder affairs) or perhaps with another trusted family member or friend.
11. Should I encourage my parents to get more help? The last time I visited, my mom seemed very confused, like she just wasn’t quite there. Dad didn’t seem to notice and didn’t want to talk about it when I asked him.
If you do not see your parent often, changes in his or her health may seem dramatic. In contrast, the primary caregiver might not notice such changes, or realize that more help, medical treatment, or supervision is needed. Sometimes a geriatric care manager or other professional is the first to notice changes. For families dealing with Alzheimer’s disease and other dementias, it can be easier to “cover” for the patient—doing things for him or her, filling in information in conversations, and so on—than to acknowledge what is happening.
A few good conversation starters are:
If you thought there might be a change in Aunt Joan’s condition, whose opinion would you seek? I didn’t notice Dad repeating himself so much the last time I was here. Do you remember when it started? Some changes may not be what you think. Occasional forgetfulness does not necessarily indicate Alzheimer’s disease. Before you raise the issue of what needs to be done, talk to your parent and the primary caregiver about your concerns. Try not to sound critical when you raise the subject. Instead, mention your particular worry, for example, “Mom, it looks like you don’t have much food in the house—are you having trouble getting to the store?” and explain why you are concerned. Listen to what the primary caregiver says about the situation, and whether he or she feels there are problems.
Discuss what you think needs to be done: “Do we need to get a second opinion about the diagnosis? Can you follow the medication schedule? Would you like some help with housework?” Try to follow up your suggestions with practical help, and give specific examples of what you can do.
For example, you might arrange to have a personal or home health aide come in once a week. You might schedule doctors’ appointments or arrange for transportation. In some cases you may have to be forceful, especially if you feel that the situation is unhealthy or unsafe. Do not leave a frail adult at risk. If you have to act against the wishes of your parent or the primary caregiver, be direct and explain what you are going to do. Discuss your plan and say why you are taking action.
12. How can we make the house safer for my mother who has Alzheimer’s disease? I’m worried about her safety.
You can take many precautions that will make the house safer, more accessible, and comfortable. Because you are not present, you may want to evaluate the safety of your mother’s home during one of your visits (with the understanding that you must quickly correct any real dangers). On future visits, you should be alert for hazards and aware of things you can do to make the house safer. If you are worried about your parent’s safety, don’t wait until the next visit. If you feel that your parent is unsafe alone, make note of which behaviors have become most worrisome and discuss these with the primary caregiver and the doctor. Behavior that is unsafe or unhealthy may have become familiar to the primary caregiver. The kitchen in particular presents many opportunities for accidents, especially when a parent misuses appliances or forgets that something is cooking. Discuss your concerns and offer to help adapt the environment to meet your parent’s changing safety needs.
If you are concerned about home safety for a parent who has Alzheimer’s disease, NIA’s free pamphlet, Home Safety for People with Alzheimer’s Disease has plenty of helpful suggestions. The Resources section of this booklet has information on getting a copy of this publication. Consider these principles about home safety for older people:
Think prevention.
It is hard to predict or anticipate every problem, but you can go through the house room-by-room and evaluate safety problems. Checking the safety of your parent’s home may prevent a hazardous situation. Some easy steps to take:
Remind the primary caregiver to lock all doors and windows on the inside and outside to prevent wandering.
Make sure all potentially harmful items, such as medications, weapons, machinery, or electrical cords are put away in a safe, preferably locked, place when they’re not in use.
Use child-resistant caps on medicine bottles and childproof door latches on storage units as well.
Adapt the environment.
Because it is easier to change a place than to change a person, consider the following:
Install at least one stairway handrail that extends beyond the first and last steps.
Place carpet or safety grip strips on stairs.
Avoid clutter, which can cause disorientation and confusion.
Keep all walk areas free of furniture, and extension and electrical cords.
Cover unused outlets with childproof plugs.
Make sure all rooms have adequate lighting.
13. How can I help lighten the load for my mother? Over the years Dad’s condition has worsened, and now when we talk Mom sounds exhausted.
Your mother may be hesitant to ask for help, or to say that she needs a break. Be sure to acknowledge how important her care has been for your father. Also discuss the physical and emotional effects caregiving can have on people. True, caregiving can be satisfying, but it also can be very hard work. Offer to help arrange for respite care.
Respite care will give your mother a break from her caregiving responsibilities. Respite care can be for an afternoon or for several days. Care can be provided in the family home, or your dad may spend the time in an adult day services program or at a skilled nursing facility. The ARCH National Respite Locator Service can help you to find services in your parent’s community. You might suggest your mother contact the Well Spouse Association—it offers support to the wives, husbands, and partners of chronically ill or disabled people and has a nationwide listing of local groups. The Resources section of this booklet has information on how to contact these organizations.
Your parents may need more help from home-based care to continue to live in their own home. Some people find it hard to have paid caregivers in the house but most also say that the help is invaluable. If your mother is reluctant, point out that with in-home help she may have more energy to devote to your father’s care and some time for herself.
Over time, your father may need to move to assisted living or a nursing home. If that happens, try to support your mother. You can help her select a facility. She may need help adjusting to his absence or to living alone in their home. Just listening may not sound like much help, but often it is.
14. How can I help my folks decide if it’s time for them to move? I don’t think they can stay in their own home much longer. Should I suggest that they move to my home? Move to assisted living? I’m at a loss.
The decision about whether your parents should move is often tricky and emotional. Each family will have its own reasons for wanting (or not wanting) to take such a step. One family may decide a move is right because the parents no longer need so much space or cannot manage the home. For another family the need for hands-on care in a long-term care facility motivates a change. In some cases, a move frees up cash so that the parent can afford a more suitable situation.
In the case of long-distance caregivers, the notion of moving can seem like a solution to the problem of not being close enough to help. For some caregivers, moving a sick or aging parent to their own home or community can be a viable alternative. In some cases, an adult child moves back to the parent’s home to become the primary caregiver. Keep in mind that leaving a home, community, and familiar medical care can be very disruptive and difficult.
Older adults and their families have some choices when it comes to deciding where to live, but these choices can be limited by factors such as illness, financial resources, and personal preferences. Making a decision that is best for your parent—and making that decision with your parent—can be difficult. Try to learn as much as you can about possible housing options.
Older adults, or those with serious illness, can:
stay in their own home, or move to a smaller one,
move to an assisted living facility or retirement community,
move to a long-term care facility, or
move in with another family member.
Experts advise families to think carefully before moving an aging adult into an adult child’s home. In its fact sheet Home Away From Home, the Family Caregiver Alliance suggests considering the following issues before deciding whether or not to move your parent to your home:
Evaluate whether your parent needs constant supervision or assistance throughout the day, and consider how this will be provided.
Identify which activities of daily living (eating, bathing, toileting) your parent can perform independently.
Determine your comfort level for providing personal care such as bathing or changing an adult diaper.
Take an honest look at your health and physical abilities, and decide if you are able to provide care for your parent.
Expect changes in your parent’s medical or cognitive condition.
Explore the availability of services such as a friendly visitor, in-home care, or adult day services.
Investigate back-up options if living with your parent does not work or is not your choice.
Consider the type of medical care your parent needs and find out if appropriate doctors and services are available in your community.
15. What happens if my mother gets too sick to stay at home? She is terrified of ending up in an institution and has asked me to promise that I won’t “put her” in a nursing home. It is hard for me to figure out what to say.
If you are over 40, chances are you’ve had a similar conversation with someone you love. It might come up if you see a segment about nursing homes while watching the evening news. “Promise you’ll never send me to a nursing home,” your mother says. This request usually reflects what most of us want: to stay in our own homes, to maintain independence, to turn to family and friends for help.
Sometimes, however, parents really do want their adult children to make a promise. Think carefully before doing so. According to the Centers for Medicare and Medicaid Services, “Quality of care means doing the right thing, at the right time, in the right way, for the right person, and having the best possible results.” Agreeing that you will not “put someone” in a nursing home may close the door to the right care option for your family. It requires you to know that no matter what happens you will be able to care for your parent. The fact is that for some illnesses, and for some people, professional health care in a long-term care facility is the only reasonable choice.
When faced with a parent who is truly ill or frail, long-distance caregivers may find that some promises hamper their ability to do what is necessary, either for their own health, or for their parent’s. Many people discover too late that the promises they made (“Of course you will be able to die at home.&rdquo cannot be kept.
Try to focus your commitments on what you know here and now. If asked to make a promise, you could say something like, “Dad, I will make sure you have the best care we can arrange. You can count on me to try and do what’s best for everyone. I can’t think of a situation where I’d walk out on you.” Base your promises and decisions on a realistic assessment of the current situation or diagnosis, and realize that you may need to revisit your agreement. Your father’s situation might change. Your situation might change. You truly do not know what will happen in the future—disease and illness can lead to enormous changes. And, of course, it’s not only your parent’s health that changes—your own health may alter over time, too.
If you’ve already made a promise to a parent, remember you can bring the subject up again; you can change your answer to something more specific, something you feel you can undertake. As hard as that conversation might be, it may be better than risking the guilt of a promise not kept.
16. How is it that long-distance caregiving makes me feel so guilty all the time? I thought being so far away would be easier than this.
You might think that being far away gives you some immunity from feeling overwhelmed by what is happening to your parent—but long-distance caregivers report that this is not so. Although you may not feel as physically exhausted and drained as the primary, hands-on caregiver, you may still feel worried and anxious. Many long-distance caregivers describe feeling terribly guilty about not being there, about not being able to do enough or spend enough time with the parent. Remind yourself that you are doing the best you can given the circumstances, and you can only do what you can do.
If you are like most long-distance caregivers, you already have many people who rely on you: Your spouse, children, perhaps even grandchildren, as well as friends, coworkers, and colleagues. Adding one more “to-do” to your list may seem impossible. You may find some consolation or comfort in knowing that you are not alone. Many people find that support groups are a great resource and a way to learn caregiving tips and techniques that work—even from a distance. Others find the camaraderie and companionship helpful. Some enjoy meeting monthly or weekly, while others find what they need in online support groups. The Eldercare Locator may be able to help you find a local group. The Resources section of this booklet has details on how to contact organizations that may have helpful information.
17. How can I be sure that my father’s caregiver isn’t mistreating him? Everything has been fine so far, but I’m worried that as his mental status deteriorates, something harmful might happen.
From a distance, it can be hard to assess the quality of your father’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going. Sometimes a geriatric care manager can help. You can stay in touch by phone and take note of any concerns that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. They can take many forms, including domestic violence, emotional abuse, financial abuse, and basic neglect.
The stress that may happen when adult children care for their aging parents can take a toll on everyone. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the mid-to-late stages of Alzheimer’s disease, the older adult may become physically aggressive and difficult to manage. This might cause a caregiver to respond angrily. But no matter what the cause or who is the perpetrator, abuse and neglect are never acceptable responses.
If you feel that your parent is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, contact someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.
Elder Mistreatment Elder mistreatment is the intentional or unintentional hurting, either physical or emotional, of an older person. Some signs to watch for:
Bruises, pressure marks, broken bones, abrasions, and burns may indicate physical abuse, neglect, or mistreatment.
Unexplained withdrawal from normal activities, a sudden change in alertness, and unusual depression may indicate emotional abuse.
Sudden changes in financial situations may be the result of exploitation.
Bedsores, unattended medical needs, poor hygiene, and unusual, unexplained weight loss can indicate neglect.
Behavior such as belittling, threats, and other uses of power and control by spouses may indicate verbal or emotional abuse.
Strained or tense relationships, and frequent arguments between the caregiver and older person can indicate mistreatment.
I f your parent is in a long-term care facility, the facility must take steps to prevent (and report) abuse. Nursing homes, like hospitals, are subject to strict State licensing requirements and Federal regulations. Even so, neglect and abuse can occur. For more information, contact the NationalCenter on Elder Abuse. The Resources section of this booklet has details on how to contact the Center.
Signs of Self-Neglect Self-neglect describes situations in which older people put themselves at high risk. People who neglect themselves may have a disorder which impairs their judgment or memory. They may have a chronic disease. Knowing where to draw the line between self-neglect and a person’s right to independence can be hard. Here are some signs that may mean it’s time to intervene:
Hoarding
Failure to take essential medications or refusal to seek medical treatment for serious illness
Leaving a burning stove unattended
Poor hygiene
Not wearing suitable clothing for the weather
Confusion
Inability to attend to housekeeping
Dehydration
18. How can I help my parents think about their future health care preferences? Since my mother was diagnosed with cancer, we’ve heard a lot about the importance of advance care planning. How do we do that?
Making advance care plans is a key step for your parent to take to be sure that his or her health care preferences are known. Health care providers can only respect those wishes that have been made known and are documented in the medical record. Advance care planning can help your family avoid some of the conflicts that can occur when family members disagree over treatment decisions. It may be easier to make certain decisions after discussing them with family, clergy members, or health care providers. Decisions about forgoing treatment, for instance, or ending life support, involve complex emotional issues and are hard for many people to make alone. Try to make peace with yourself and your family, whatever the decision. As one caregiver put it, “So much of the task is wading through your own feelings—and the rest is just figuring out what to do.”
When thinking about the future consider:
Naming a surrogate decision maker (a surrogate has the authority to make decisions on behalf of someone who is too ill to do so),
Stating which treatment results are desirable and which ones are unacceptable,
Discussing what to do in an emergency,
Noting preferences regarding any possible treatments, and whether or not a time-limited trial would be acceptable (for instance, 5 days on a ventilator to recover some strength; a week with a feeding tube, and so on),
Talking to the doctor and surrogate about preferences and including written instructions in the medical record.
Advance care planning is an ongoing process. As an illness progresses and circumstances change, your parent may want to revisit his or her preferences. If so, be sure to update all written instructions and share the changes with health care providers and anyone who assists with care. Try to approach decision-making tasks by recognizing that you are working with a parent, not for a parent (unless you are healthcare proxy or agent, in which case, you will be implementing a family member’s decisions). How will you know when the advance care plans are complete and that you have covered all the bases? A complete plan will:
Be very specific and detailed and cover what is to be done in a variety of medical situations,
Name a healthcare proxy,
Be recorded in the medical record,
Be readily available to any caregiver in the home, nursing home, or hospital.
19. What is the difference between an advance directive and a living will? The terms are confusing. Since my father is still relatively healthy, what kinds of instructions should I help him think about now?
Advance directives are oral and written instructions about future medical care should your parent become unable to make decisions (for example, unconscious or too ill to communicate). Each State regulates the use of advance directives differently. A living will is one type of advance directive. It takes effect when the patient is terminally ill.
Advance directives are not set in stone. A patient can revise and update the contents as often as he or she wishes. Patients and caregivers should discuss these decisions—and any changes in them—and keep the health care team informed. Everyone involved should be aware of your parents’ treatment preferences. Because State laws vary, check with your Area Agency on Aging, a lawyer, or financial planner. They may have information on wills, trusts, estates, inheritance taxes, insurance, Medicare, and Medicaid.
The person who has the authority to make medical decisions on another person’s behalf is called a healthcare proxy. The terms “healthcare proxy” and “healthcare agent” or “surrogate” are used interchangeably. These responsibilities are called “durable” (for example, you may hear the phrase “durable power of attorney&rdquo because they remain in effect even if your parent is unable to make decisions. Most people appoint a close friend or family member. Some people turn to a trusted member of the clergy or a lawyer. The designated person should be able to understand the treatment choices. Know your parents' values, and support their decisions.
The decision to name a healthcare proxy is extremely important. A written document, kept in the medical record and identifying the designated proxy, should always be up-to-date. Durable medical power of attorney forms do not give explicit guidance to the proxy about what decisions to make. Many States have developed forms that combine the intent of the durable power of attorney (to have an advocate) and the intent of the living will (to state choices for treatment at the end of life).
These combination forms may be more effective than either of the two used individually. Each State regulates advance directives differently, so you will need to consult with the physician, nurse, social worker, or family lawyer to know what is required. It’s also a good idea to check to make sure that all financial matters, including wills and life insurance policies, are in order.
What other information should I keep track of? The answer to this question is different for every family. You might want to help organize the following information and update it as needed. This list is just a starting point.
Full legal name and residence
Birth date and place
Social Security number
Employer(s) and dates of employment
Education and military records
Sources of income and assets; investment income (stocks, bonds, property)
Insurance policies, bank accounts, deeds, investments, and other valuables
Most recent income tax return
Money owed, to whom, and when payments are due
Credit card and charge account names and numbers
20. What if I’m told Mom only has a few months to live? I can’t fly out to be with her for that long, but I want her to know that I am here for her.
When Ellen’s father, Sam, was diagnosed with congestive heart failure, she was 4 months into her second pregnancy. Her mother had died several years earlier. During her mother’s illness Ellen, then single, had gone home almost every weekend to help her father and be with her mother. After her mother’s death, she stayed close to her dad, even helping him move to an assisted living facility in his own town. Sam was happy.
He enjoyed playing bridge, dining in the common room, and taking walks through his hometown. Over time, Ellen did her best to visit her father. With two young children, she couldn’t get there regularly, but she made a point of calling Sam twice a week. Eventually it became harder for Sam to catch his breath and on some days he was too tired to get out of bed. Sam died quietly one night in his sleep. Ellen said she had no regrets: She had done everything she needed to do in her relationship with her father. Knowing this comforted her.
The news that a family member is dying is difficult to bear—and yet, it is a basic part of life. When you hear that a parent has a terminal illness, you may be flooded with emotions: Sorrow, disbelief, anger, anxiety. It can be hard to know what to do or what to say. Fortunately, many organizations are working to improve the lives of dying people and their families. Try to locate a hospice program. Hospice provides special care for people who are near the end of life. Check with Medicare for information on hospice benefits.
Talk to your own friends, clergy, or colleagues. Just about everyone has experienced the serious illness and death of a beloved friend or family member. Exchanging stories can help you as you cope with your own loss and with trying to decide what you can do. Contact your parent’s doctor and talk to your own doctor as well to find out what will need to be done, the kinds of care that your mother or father is likely to need, and how you can arrange for it to happen.
Some people find that it is very hard to talk about death and dying, and will go to great lengths to avoid the subject. Difficult as it is, talk to your parents about what is going on, but if you can’t have that conversation, don’t let that add to your worry. There is no single “right” way to approach the death of a loved one.
Resources: Where to Turn for Help
National Institute on Aging (NIA) NIA offers free information on a wide variety of subjects, in English and Spanish, including doctor/patient communication, end-of-life care, the biology of aging, and Alzheimer’s disease. NIA also publishes more than 40 different Age Pages and, in conjunction with the National Library of Medicine, produces www.NIHSeniorHealth.gov, an easy-to-use website designed especially for older people.
National Institute on Aging Information Center P.O. Box 8057 Gaithersburg, MD 20898-8057 Phone: 1-800-222-2225 (toll-free) TTY: 1-800-222-4225 (toll-free) Website: www.nia.nih.gov To order publications (in English or Spanish) online or sign up for email alerts, visit: www.nia.nih.gov/HealthInformation.
Alzheimer’s Disease Education and Referral Center (ADEAR) A service of NIA, the ADEAR Center offers free publications and information on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease. P.O. Box 8250 Silver Spring, MD20907-8250 Phone: 1-800-438-4380 (toll-free) Website: www.alzheimers.nia.nih.gov
Administration on Aging (AoA) AoA provides funds and community-based services for programs that serve older adults. Phone: 202-619-0724 Website: www.aoa.gov
Alzheimer’s Association A national voluntary health organization supporting Alzheimer’s research and care, the Association offers information and support to patients and families. 225 North Michigan Avenue, Floor 17 Chicago, IL 60601-7633 Phone: 1-800-272-3900 (toll-free) Website: www.alz.org
American Association of Homes and Services for the Aging This trade association for not-for-profit nursing homes, continuing care retirement communities, assisted living, senior housing facilities, and community service organizations offers information for consumers and families. 2519 Connecticut Avenue, NW Washington, DC20008-1520 Phone: 202-783-2242 Website: www.aahsa.org
ARCH National Respite Network and Resource Center This national resource center provides resources and information, including a respite locator program, technical assistance to State organizations, and an information clearinghouse. 800 Eastowne Drive, Suite 105 Chapel Hill, NC27514 Phone: 1-800-473-1727, ext. 222 (toll-free) Website: www.archrespite.org
BenefitsCheckUp An online service provided by the National Council on Aging, this program allows people to find programs that can help them meet health care costs. Website: www.benefitscheckup.org
Caregiver Resource Directory Offered by BethIsraelMedicalCenter, this guide offers resources, facts, and advice about caring for a family member, as well as the caregiver. Website: www.netofcare.org/crd/resource_form.asp
Centers for Medicare and Medicaid Services (CMS) CMS is a Federal agency that administers the Medicare program and works in partnership with the States to administer Medicaid. 7400 Security Boulevard Baltimore, MD21244-1850 Phone: 1-800-633-4227 (toll-free) TTY: 1-866-226-1919 (toll-free) Website: www.cms.hhs.gov
Children of Aging Parents This organization provides information, referral services, and educational outreach. P.O. Box 167 Richboro, PA18954 Phone: 1-800-227-7294 (toll-free) Website: www.caps4caregivers.org
Eldercare Locator This nationwide service helps identify local resources for seniors. Phone: 1-800-677-1116 (toll-free) Website: www.eldercare.gov
Family Caregiver Alliance The Alliance provides information, education, services, research, and advocacy for caregivers. 180 Montgomery Street, Suite 1100 San Francisco, CA94104 Phone: 1-800-445-8106 (toll-free) Website: www.caregiver.org
Hospice Foundation of America The Foundation promotes hospice care and educates professionals and families about issues related to caregiving, terminal illness, loss, and bereavement. 1621 Connecticut Avenue, NW Suite 300 WashingtonDC20009 Phone: 1-800-854-3402 (toll-free) Website: www.hospicefoundation.org
National Alliance for Caregiving The Alliance supports family caregivers and the professionals who help them and works to increase public awareness of issues facing family caregivers. The website features peer-reviewed links to other resources for family caregivers. 4720 Montgomery Lane, 5th Floor Bethesda, MD20814 Website: www.caregiving.org
National Association of Professional Geriatric Care Managers The Association offers information and referral services. 1604 North Country Club Road Tucson, AZ85716-3102 Phone: 520-881-8008 Website: www.caremanager.org
NationalCenter on Elder Abuse The Center promotes understanding and action on elder abuse, neglect, and exploitation. 1201 15th Street, NW Suite 350 Washington, DC20005-2842 Phone: 202-898-2586 Website: www.ncea.aoa.gov
National Family Caregivers Association This group supports family caregivers and offers education, information, and referrals. 10400 Connecticut Avenue, Suite 500 Kensington, MD20895-3944 Phone: 1-800-896-3650 (toll-free) Website: www.nfcacares.org
National Hospice and Palliative Care Organization This professional association for hospices has resources and information for the public. 1700 Diagonal Road, Suite 625 Alexandria, VA22314 Phone: 1-800-658-8898 (toll-free) Website: www.nhpco.org
Partnership for Prescription Assistance This program helps qualified people who lack prescription coverage to get needed medicines. Phone: 1-888-477-2669 (toll-free) Website: www.pparx.org
Well Spouse Association The Association is a national, nonprofit membership organization providing support to wives, husbands, and partners of chronically ill and/or disabled people. 63 West Main Street, Suite H Freehold, NJ 07728 Phone: 1-800-838-0879 (toll-free) Website: www.wellspouse.org
Writer: Janice Lynch Shuster Cover artist: Kiki Felix Designer: Crabtree Co. Project Management: JBS International Please send comments, suggestions or ideas to: Freddi Karp, Editor Office of Communications and Public Liaison National Institute on Aging Building 31, Room 5C27 Bethesda, MD 20892 301-496-1752 karpf@nia.nih.gov
CancerHelp UK (www.cancerhelp.org.uk) is the patient information website of Cancer Research UK. The website has easy to understand information about cancer and cancer treatment. Anyone with questions about cancer can talk to our specialist information nurse team on freephone 0808 800 4040. Lines are open from 9am to 5pm, Monday to Friday.
Smoking Alters Gene Activity in Lungs and Tumors
The strong link between smoking and lung cancer has long been clear, but the underlying genetic and molecular changes have been harder to pin down. Now NIH scientists have shown that cigarette smoking distinctively alters gene activity and that these changes can persist for years, contributing to cancer long after a person has kicked the habit.
Lung cancer is the leading cause of cancer death worldwide, and 90% of lung cancers are caused by smoking. Scientists had previously shown that smoking-related tumor cells have overly active, or overexpressed, genes that regulate cell division. But the roles of these and other genes in early tumor development and cancer deaths have been uncertain.
A team of researchers based largely at NIH's National Cancer Institute (NCI) set out to clarify how smoking alters gene expression and leads to cancer. They used microarray technologies, or gene chips, to analyze the activities of thousands of genes simultaneously in lung tissue samples. The samples included both normal and tumor tissues collected from 74 patients who had lung adenocarcinoma, the most common type of lung cancer. Participants included current and former smokers, as well as people who had never smoked.
As reported in the February 20, 2008, issue of the journal PLoS ONE, the researchers identified 135 genes that were expressed differently in the tumors of current smokers than in the lung tumors of people who had never smoked. Smokers had significantly increased activity in genes that regulate the cell cycle and cell division. Former smokers had just slightly altered activity in some of these same genes. In a few cases, these genetic changes persisted even 2 decades after the participants had quit smoking.
When they compared non-tumor lung tissues, the researchers found that current smokers had altered activity in nearly 100 genes. Many of these genes play a role in regulating immune response. The researchers speculate that these genes might be working to protect lung tissues from the onslaught of toxic chemicals in cigarette smoke. These immune-response genes were not significantly altered in former smokers, suggesting that non-tumor lung tissue can recover from the effects of previous smoking.
The scientists also looked at how smoking-related genetic changes relate to survival in lung cancer patients. They found that the risk of lung cancer death increased 3-fold in smokers who had altered expression of 2 specific cell-cycle-related genes in non-tumor lung tissue. “More studies are needed to confirm that the gene expression changes are due to smoking and affect tumor development or progression," said Dr. Maria Teresa Landi, a researcher in NCI's Division of Cancer Epidemiology and Genetics and first author of the report. "If confirmed, these genes could become important targets for preventing and treating lung cancer in smokers."
General Information About Adrenocortical Carcinoma
Adrenocortical carcinoma is a rare disease in which malignant (cancer) cells form in the outer layer of the adrenal gland. There are two adrenal glands. The adrenal glands are small and shaped like a triangle. One adrenal gland sits on top of each kidney. Each adrenal gland has two parts. The outer layer of the adrenal gland is the adrenal cortex. The center of the adrenal gland is the adrenal medulla. The adrenal cortex makes important hormones that:
Balance the water and salt in the body.
Help keep blood pressure normal.
Help manage the body's use of protein, fat, and carbohydrates.
Cause the body to have masculine or feminine characteristics.
The adrenal medulla makes hormones that help the body react to stress. Adrenocortical carcinoma is also called cancer of the adrenal cortex. A tumor of the adrenal cortex may be functioning (makes more hormones than normal) or nonfunctioning (does not make hormones). The hormones made by functioning tumors may cause certain signs or symptoms of disease. Cancer that forms in the adrenal medulla is called pheochromocytoma. See the PDQ summary on Pheochromocytoma Treatment for more information. Having certain genetic conditions increases the risk of developing adrenocortical carcinoma. Anything that increases your risk of getting a disease is called a risk factor. Having a risk factor does not mean that you will get cancer; not having risk factors doesn’t mean that you will not get cancer. People who think they may be at risk should discuss this with their doctor. Risk factors for adrenocortical carcinoma include having the following hereditary diseases:
Li-Fraumeni syndrome.
Beckwith-Wiedemann syndrome.
Carney complex.
Possible signs of adrenocortical carcinoma include pain in the abdomen and certain physical changes. These and other symptoms may be caused by adrenocortical carcinoma:
A lump in the abdomen.
Pain the abdomen or back.
A nonfunctioning adrenocortical tumor may not cause symptoms in the early stages. A functioning adrenocortical tumor makes too much of a certain hormone (cortisol, aldosterone, testosterone, or estrogen). Having too much of a certain hormone may cause the following symptoms: Too much cortisol
Weight gain in the face, neck, and trunk of the body and thin arms and legs.
Growth of fine hair on the face, upper back, or arms.
A round, red, full face.
A lump of fat on the back of the neck.
A deepening of the voice and swelling of the sex organs or breasts in both males and females.
Muscle weakness.
High blood sugar.
High blood pressure.
Too much aldosterone
High blood pressure.
Muscle weakness or cramps.
Frequent urination.
Feeling thirsty.
Too much testosterone (in women)
Growth of fine hair on the face, upper back, or arms.
Acne.
Balding.
A deepening of the voice.
No menstrual periods.
Men who make too much testosterone do not usually have symptoms. Too much estrogen (in women)
Irregular menstrual periods in women who have not gone through menopause.
Menstrual bleeding in women who have gone through menopause.
Too much estrogen (in men)
Growth of breast tissue.
Lower sex drive.
Impotence.
These and other symptoms may be caused by adrenocortical carcinoma. Other conditions may cause the same symptoms. A doctor should be consulted if any of these problems occur. Imaging studies and tests that examine the blood and urine are used to detect (find) and diagnose adrenocortical carcinoma. The tests and procedures used to diagnose adrenocortical carcinoma depend on the patient's symptoms. The following tests and procedures may be used:
Physical exam and history: An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
Twenty-four-hour urine test: A test in which urine is collected for 24 hours to measure the amounts of cortisol or 17-ketosteroids. A higher than normal amount of these in the urine may be a sign of disease in the adrenal cortex.
Low- dosedexamethasone suppression test: A test in which one or more small doses of dexamethasone is given. The level of cortisol is checked from a sample of blood or from urine that is collected for three days.
High-dose dexamethasone suppression test: A test in which one or more high doses of dexamethasone is given. The level of cortisol is checked from a sample of blood or from urine that is collected for three days.
Blood chemistry study: A procedure in which a blood sample is checked to measure the amounts of certain substances, such as potassium or sodium, released into the blood by organs and tissues in the body. An unusual (higher or lower than normal) amount of a substance can be a sign of disease.
Blood tests: Tests to measure the levels of testosterone or estrogen in the blood. A higher than normal amount of these hormones that may be a sign of adrenocortical carcinoma.
CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. This procedure is also called nuclear magnetic resonance imaging (NMRI). An MRI of the abdomen is done to diagnose adrenocortical carcinoma.
Adrenal angiography: A procedure to look at the arteries and the flow of blood near the adrenal gland. A contrast dye is injected into the adrenal arteries. As the dye moves through the blood vessel, a series of x-rays are taken to see if any arteries are blocked.
Adrenal venography: A procedure to look at the adrenal veins and the flow of blood near the adrenal gland. A contrast dye is injected into an adrenal vein. As the contrast dye moves through the vein, a series of x-rays are taken to see if any veins are blocked. A catheter (very thin tube) may be inserted into the vein to take a blood sample, which is checked for abnormal hormone levels.
PET scan (positron emission tomography scan): A procedure to find malignant tumor cells in the body. A small amount of radioactiveglucose (sugar) is injected into a vein. The PET scanner rotates around the body and makes a picture of where glucose is being used in the body. Malignant tumor cells show up brighter in the picture because they are more active and take up more glucose than normal cells do.
Certain factors affect the prognosis (chance of recovery) and treatment options.
The prognosis (chance of recovery) and treatment options depend on the following:
The stage of the cancer (the size of the tumor and whether it is in the adrenal gland only or has spread to other places in the body).
Whether the tumor can be completely removed in surgery.
Whether the cancer has been treated in the past.
The patient's general health.
Adrenocortical carcinoma may be cured if treated at an early stage. After adrenocortical carcinoma has been diagnosed, tests are done to find out if cancer cells have spread within the adrenal gland or to other parts of the body. The process used to find out if cancer has spread within the adrenal gland or to other parts of the body is called staging. The information gathered from the staging process determines the stage of the disease. It is important to know the stage in order to plan treatment. The following tests and procedures may be used in the staging process:
CT scan (CAT scan): A procedure that makes a series of detailed pictures of areas inside the body, such as the abdomen or chest, taken from different angles. The pictures are made by a computer linked to an x-ray machine. A dye may be injected into a vein or swallowed to help the organs or tissues show up more clearly. This procedure is also called computed tomography, computerized tomography, or computerized axial tomography.
MRI (magnetic resonance imaging) with gadolinium: A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. A substance called gadolinium may be injected into a vein. The gadolinium collects around the cancer cells so they show up brighter in the picture. This procedure is also called nuclear magnetic resonance imaging (NMRI).
Adrenalangiography: A procedure to look at the arteries and the flow of blood near the adrenal gland. A contrast dye is injected into the adrenal arteries. As the dye moves through the blood vessel, a series of x-rays are taken to see if any arteries are blocked.
Adrenal venography: A procedure to look at the adrenal veins and the flow of blood near the adrenal gland. A contrast dye is injected into an adrenal vein. As the contrast dye moves through the vein, x-rays are taken to see if any veins are blocked. A catheter (very thin tube) may be inserted into the vein to take a blood sample, which is checked for abnormalhormone levels.
Cavagram: A procedure to look at the inferior vena cava and the flow of blood through the inferior vena cava. A contrast dye is injected into a blood vessel. As the contrast dye moves through the blood vessel to the inferior vena cava, a series of x-rays are taken to see if there are any changes to the inferior vena cava and the flow of blood through the inferior vena cava.
Ultrasound exam: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs, such as the vena cava, and make echoes. The echoes form a picture of body tissues called a sonogram.
Adrenalectomy: A procedure to remove the entire adrenal gland. A tissue sample is viewed under a microscope by a pathologist to check for signs of cancer.
The following stages are used for adrenocortical carcinoma:
Enlarge
Pea, peanut, walnut, and lime show tumor sizes.
Stage I In stage I, the tumor is 5 centimeters or smaller and is found only in the adrenal gland.
Stage II
In stage II, the tumor is larger than 5 centimeters and is found only in the adrenal gland.
Stage III In stage III, the tumor can be any size and may have spread to fat or lymph nodes near the adrenal gland.
Stage IV
In stage IV, the tumor can be any size and has spread:
to fat or organs and to lymph nodes near the adrenal gland; or
to other parts of the body. Adrenocortical carcinoma commonly spreads to the lung, liver, bones, and peritoneum (the tissue that lines the abdominal wall and covers most of the organs in the abdomen).
Recurrent Adrenocortical Carcinoma Recurrentadrenocortical carcinoma is cancer that has recurred (come back) after it has been treated. The cancer may come back in the adrenal cortex or in other parts of the body.
Treatment Option Overview
There are different types of treatment for patients with adrenocortical carcinoma. Different types of treatments are available for patients with adrenocortical carcinoma. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. Before starting treatment, patients may want to think about taking part in a clinical trial. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment. Clinical trials are taking place in many parts of the country. Information about ongoing clinical trials is available from the NCI Web site. Choosing the most appropriate cancer treatment is a decision that ideally involves the patient, family, and health care team. Three types of standard treatment are used:
Surgery Surgery to remove the adrenal gland (adrenalectomy) is often used to treat adrenocortical carcinoma. Sometimes the nearby lymph nodes are also removed. Radiation therapy Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated. Chemotherapy Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the spinal column, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated. Mitotane may be used to treat adrenocortical carcinoma. Mitotane stops the adrenal cortex from making hormones and relieves symptoms caused by the hormones. New types of treatment are being tested in clinical trials. These include the following:
Biologic therapy Biologic therapy is a treatment that uses the patient's immune system to fight cancer. Substances made by the body or made in a laboratory are used to boost, direct, or restore the body's natural defenses against cancer. This type of cancer treatment is also called biotherapy or immunotherapy. This summary section refers to specific treatments under study in clinical trials, but it may not mention every new treatment being studied. Information about ongoing clinical trials is available from the NCI Web site. http://www.nci.nih.gov/cancertopics/pdq/treatment/adrenocortical/Patient/page3
What is Bipolar Disorder? Everyone has feelings of happiness and sadness once in a while. Feeling high and feeling low are part of life. But for someone with bipolar disorder (sometimes called manic depression), these feelings can be extreme:
These ups and downs can be too much for a person to cope with.
They can interfere with daily life.
Sometimes they can even be dangerous.
The ups and downs One day you may feel so depressed that you can't get out of bed. Work may seem impossible. On another day you may feel great and full of endless energy. You may feel like you’re getting a lot done. But other people might think that what you are doing is dangerous and out of control. Bipolar disorder is a lifelong condition. It can be hard for healthcare providers to diagnose. But it's nothing to be embarrassed about. Learning more about how to manage the condition can help. In this section:
Recognizing Bipolar Disorder talks about symptoms and diagnosis, and includes a questionnaire that can help healthcare providers pick up symptoms of bipolar disorder.
Facts and Myths shows why some common beliefs about bipolar disorder aren’t true.
About Bipolar Disorder Bipolar disorder is a serious illness. It can make a person’s normal moods seem extreme. It used to be called manic depression. People with bipolar disorder have mood swings. Their moods can swing from very low (depression) to very high (mania). Bipolar disorder sometimes is confused with other types of depression. Bipolar disorder is a lifelong illness. But today there are many treatments. People with bipolar disorder should ask their healthcare provider about the best way to keep their moods from swinging too far one way or the other. Types of mood episodes In bipolar disorder, or manic depression, each mood swing is called an “episode.” There are 4 main types of mood episodes that people with bipolar disorder can have:
Depression — Depression is when people with bipolar disorder feel very sad. Sometimes this can go on for a long period of time. They may not even want to get out of bed or eat. They don’t enjoy doing things they used to do.
Mania — Mania is the other side of bipolar disorder. Mania may start with a good feeling, almost like a “high.” Or it may make a person feel very irritable and angry. People with mania may do very risky things.
Hypomania — Hypomania is a milder form of mania. It can make people feel good. They may think they are getting more things done. But the “feel good” stage can change into mania or depression. Hypomania is different from mania because it doesn’t get in the way of things like work or family. It sometimes is not even noticed as a problem.
Mixed mood — This is when feelings of mania and depression go back and forth quickly, sometimes even in the same day.
With all types of extreme mood episodes, people are at risk for suicide.>>>.>... Recognizing Bipolar Disorder Bipolar disorder, sometimes called manic depression, can be hard to detect because the symptoms can be similar to other mood disorders. Some people have the condition for 10 years or more before a healthcare provider diagnoses it. The reason for this might have to do with the symptoms. When people are feeling manic or hypomanic, they are full of energy. They usually feel good. They feel "high on life" and don’t always seek help. On the other hand, people are more likely to seek help when they fall into depression. When people feel depressed, they are likely to describe only depression symptoms to their healthcare provider. They may not mention the times when they are feeling “high on life,” since depression is what they are feeling at the time. Therefore, it’s common for a person to be incorrectly diagnosed with major depression instead of bipolar disorder. In fact, nearly half of all patients who have bipolar disorder, sometimes called manic depression, will first be diagnosed with major depression. That’s why it’s important for people to say how they’ve been feeling weeks and even months before today to their healthcare provider in order to make it easier for the right diagnosis. Many of the signs and symptoms of bipolar disorder can also be associated with other illnesses, such as anxiety disorders and schizophrenia. This can make it even harder for a healthcare provider to make a correct diagnosis.
The Mood Disorder Questionnaire can help a healthcare provider tell if someone has bipolar disorder. >>>>>> Signs and Symptoms The signs and symptoms of bipolar disorder can be different in each person. Symptoms of depression include:
Feeling sad or blue, or “down in the dumps”
Loss of interest in things the person used to enjoy, including sex
One person describes depression this way: "I doubt completely my ability to do anything well. It seems as though my mind has slowed down and burned out to the point of being virtually useless. [I am] haunt[ed]…with the total, the desperate hopelessness of it all…Others say, 'It's only temporary, it will pass, you will get over it.' But of course they haven't any idea of how I feel, although they are certain they do. If I can't feel, move, think, or care, then what on earth is the point?"
>>>>>>>>>>>>>>>>> Symptoms of mania include:
Increased energy level
Less need for sleep
Racing thoughts or mind jumps around
Easily distracted
More talkative than usual or feeling pressure to keep talking
More self-confident than usual
Focused on getting things done, but often completing little
Risky or unusual activities to the extreme, even if it’s likely bad things will happen
One person describes mania this way: "The fast ideas become too fast and there are far too many…overwhelming confusion replaces clarity… Your friends become frightened…everything is now against the grain…you are irritable, angry, frightened, uncontrollable, and trapped."Hypomania is a milder form of mania that has similar but less severe symptoms. Keeping track of your symptoms Everyone has mood swings. But if you have bipolar disorder, you may have times of mania and depression that make your life unbearable for yourself or other around you. But with treatment, bipolar disorder can be managed and you can live a normal life. One important way to manage bipolar disorder is to keep track of how you're feeling. Tracking your symptoms using a Mood Chart can provide a sense of how things are going and show how your treatment is working.>>>>>>>>>>>Diagnosis “I think that, all along the way I wanted people to help me, but I just wouldn’t let them. There was a fear of loss somehow, I think… I was just absolutely afraid to reach out to people, and to tell them what was going on, how I could use their help, how they could affect my life.” — Stuart Read more comments from people with bipolar disorder
Why early diagnosis and treatment are important
It’s important to get treatment for bipolar disorder, sometimes called manic depression, as early as possible. Many people with bipolar disorder don’t know they have it. Some don’t seek treatment because they are ashamed of what they feel. Others are incorrectly diagnosed with other illnesses, such as depression, anxiety, or schizophrenia. The right treatment can make bipolar disorder easier to manage. Also, controlling symptoms can help people live more normal lives. Learning how to recognize bipolar disorder may help you get the right diagnosis. Healthcare providers need to hear exactly how you are feeling in order to make the right diagnosis. That way, you can get the right treatment sooner. If you have bipolar disorder, as you get older your mood episodes can happen more often. If someone has 4 or more episodes a year, bipolar disorder can be even harder to treat. So it’s important to get treatment as early in life as possible.
Are there any other illnesses linked to bipolar disorder?
Some people have symptoms of bipolar disorder when they're fairly young but don’t get diagnosed right away. These people are more likely to also develop alcohol problems and other substance-abuse problems. These problems can make their bipolar disorder harder to manage. They also can increase the number of times they have to go to the hospital. Other problems linked to bipolar disorder include:
Eating disorders such as anorexia and bulimia
Attention-deficit/hyperactivity disorder (ADHD)
Panic disorder
Social phobia
These disorders can be dangerous and may need medical treatment.
The Mood Disorder Questionnaire may help
There is no lab test that can detect bipolar disorder. However, a simple questionnaire can help a healthcare provider tell if someone has symptoms of bipolar disorder. This questionnaire is called the Mood Disorder Questionnaire, or MDQ. The MDQ is a checklist that helps a healthcare provider to look more closely for bipolar-related symptoms. Remember, only a healthcare provider can make an accurate diagnosis. >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>Mood Disorder Questionnaire If you think you may have bipolar disorder, this Mood Disorder Questionnaire (MDQ) may help. The MDQ is a 13-item checklist developed by Robert M. A. Hirschfeld, MD, and published in the American Journal of Psychiatry. The questionnaire is designed to help your healthcare provider determine what type of mood disorder you may be experiencing. Just click the circle next to your answer. Then print out the questionnaire and give it to your healthcare provider. The answers you provide are not being stored or analyzed by this Web site. This questionnaire is not intended to give you a diagnosis. Only your healthcare provider can give you an accurate diagnosis.
Has there ever been a period of time when you were not your usual self and...
....
you felt so good or so hyper that other people thought you were not your normal self or you were so hyper that you got into trouble?
Yes No
....
you were so irritable that you shouted at people or started fights or arguments?
Yes No
....
you felt much more self-confident than usual?
Yes No
....
you got much less sleep than usual and found you didn't really miss it?
Yes No
....
you were much more talkative or spoke much faster than usual?
Yes No
....
thoughts raced through your head or you couldn't slow your mind down?
Yes No
....
you were so easily distracted by things around you that you had trouble concentrating or staying on track?
Yes No
....
you had much more energy than usual?
Yes No
....
you were much more active or did many more things than usual?
Yes No
....
you were much more social or outgoing than usual, for example, you telephoned friends in the middle of the night?
Yes No
....
you were much more interested in sex than usual?
Yes No
....
you did things that were unusual for you or that other people might have thought were excessive, foolish, or risky?
Yes No
....
spending money got you or your family into trouble?
Yes No
2.
If you checked YES to more than one of the above, have several of these ever happened during the same period of time?
Yes No
3.
How much of a problem did any of these cause you — like being unable to work; having family, money, or legal troubles; getting into arguments or fights?
Please select one response only.
No Problem Minor Problem Moderate Problem Serious Problem
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> There are 4 main types of bipolar disorder:
Bipolar I Disorder — In this type, you have had at least one episode of mania or mixed mood and often experience depression too. In between, your mood may be normal. Sometimes your mood swings happen when the seasons change.
Bipolar II Disorder — In this type, you have had at least one episode of depression and at least one period of hypomania. Hypomania is a milder form of mania. In between, your mood may be normal. Sometimes your mood swings happen when the seasons change.
Cyclothymic Disorder — This is a milder form of bipolar disorder. You may go back and forth between mild depression and a slightly elevated mood. But your mood swings are shorter and less severe. Many people with cyclothymic disorder go on to have a stronger type of bipolar disorder. This doesn’t happen to everyone, though.
Bipolar Disorder Not Otherwise Specified — This type of bipolar disorder is when you do not fit into the types mentioned above. The feelings of bipolar disorder vary from person to person.
Some people have what is called “rapid-cycling bipolar disorder.” This means they have had 4 or more periods of mania and/or depression in a year.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>.>>>>>Causes and Risk Factors Scientists don’t really know what causes bipolar disorder, sometimes called manic depression. They do think that family history plays a role. Most people with bipolar disorder have a relative with the same condition or with some other mood disorder. But family history alone does not cause someone to have bipolar disorder. We don’t yet know what those other things are.
This is what we DO know about bipolar disorder:
Bipolar disorder most often starts in teenagers and young adults. But it also can occur in children and older adults.
Bipolar disorder equally affects people of all races and backgrounds.
Special chemicals in the brain may be involved. If the levels of these chemicals are out of balance, it may be harder for brain cells to work as they should.
Bipolar disorder also could be connected to hormone levels. Hormones are chemicals in the body that do certain things. Experts have noticed a link between thyroid hormone levels and bipolar disorder.
Also, certain parts of the brain may have a different size or shape in people with bipolar disorder. The changes could be a cause or symptom of the illness.
In some cases, other illnesses may play a role in bipolar disorder.
You can watch a short movie to learn more about bipolar disorder. Please click here to see the movie. The following questions may help you start a conversation with your healthcare provider about symptoms you may be experiencing. He or she will have additional questions about your symptoms and medical history to help make an accurate diagnosis.
Do you experience mood swings?
Has there ever been a period of time when thoughts raced through your mind or you couldn't slow your mind down?
Has there ever been a period of time when you got much less sleep than usual and found you didn't really miss it?
Do any of your close relatives suffer from depression or bipolar illness (manic-depression)?
Talk to your healthcare provider and explain that you still feel depressed. Be sure to ask if you could have bipolar disorder. He or she may reconsider your treatment options.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>You’re irritable in the store. You’re irritable with the cashier. You’re irritable with the subway conductor. You’re irritable with everybody, and it turns into anger, and it’s very destructive.” — Greg Read more comments from people with bipolar disorder. People with bipolar disorder may find that their mood swings are triggered by things that happen in their life. Unpleasant, sad, or even happy events can make a time of depression or mania more likely. Triggers, also called stressors, are anything that may help cause a mood swing. Not everyone's triggers are the same.
Some common triggers of bipolar mood swings include:
Not having a regular sleep schedule
Misusing alcohol or drugs
Stopping your medicine
Starting medicines for depression (in some cases), or other medicines and herbal products
Having thyroid problems and other medical conditions
Some people find that triggers can be things like:
Seasonal changes
Holidays
Illness
Disagreements with family or friends
Problems at work
The death of a loved one
Marriage
Starting college
Starting a new job
Keeping track of moods and triggers
It's important to figure out what your own triggers are. One way to do this is to keep a diary of your moods or a Mood Chart. A mood chart is a way to record your emotions over time and a list of events in your life. After you keep a mood chart for a while, you or your healthcare provider may start to notice patterns. For instance, you may seem to get depressed when you're away from home. Or you may feel manic when the school year begins. Figuring out your triggers on your own can be tough. It may help to ask your trusted friends and family what they think your triggers are. Also, seeing a healthcare provider or therapist and discussing your mood chart can help you figure out your triggers. Talking to an expert may help you see things more clearly.
Avoiding triggers
Once you figure out what tends to trigger your mood swings, the next step is to learn how to avoid these things when you can. For instance, you may notice that consistently not getting enough sleep can lead to mood swings. In that case, you could try to plan a better sleep schedule. You also may want to talk about your triggers with family and friends. That way, they can help you avoid your triggers, too.>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>Treatment Options The first medical breakthrough in treating bipolar disorder came in the 1950s. Today, there are many medicines and other ways to manage bipolar disorder. People with bipolar disorder hold jobs, raise families, and live full lives. Treatment for bipolar disorder can vary. What works for one person may not work for someone else. That's why it's very important to work with your healthcare provider to find a treatment, or a combination of treatments, that works for you. There are 3 basic parts of treatment for bipolar disorder. They are medicine, therapy, and learning more about the condition so you can take care of yourself.
Learn about the different Medicines to treat bipolar symptoms.
WAR is never good between countries.But my opinion it depend's if it is to give freedom to others yes I think sometimes it takes war...But I think its time to pull out of Iraq.One of the purposes was to stop Bin Laden & the attack of 9-11 & threats they pose on us & other country's even now .I don't think Laden is going to be caught,.The Gov. has had ample of chances to get him, they let him get away.But yeah if other countries such as England,Africa, France,etc was in trouble, I would say if it meant war,I think the USA ought to help.
FRANK If you’re having trouble finding the right type of help, you can always call FRANK 24/7 on 0800 77 66 00 and we can talk through your options. http://www.talktofrank.com/multimap.aspx?id=278
click to enlarge map Trust The Process Counselling Centre Telford Place 1 Telford Way Luton Beds LU1 1HT Tel: 0845 241 4588 Fax: 0845 241 3402 Email: info@ttpcc.org
Drinkline provides advice and information for people with alcohol problems and those who'd like to find out about safe limits. Phone them free 24 hours a day on 0800 917 8282.
Alcoholics Anonymous run free self-help groups for people who are alcoholics. You may have heard of their 12-step recovery programme. To find out more, phone Alcoholics Anonymous 24 hours a day on local rate number 0845 769 7555. You can check out their website at www.alcoholics-anonymous.org.uk.
The Al-Anon family groups offer information and support people concerned about the drinking of a friend or family member. While young people aged 12 to 20 concerned about a parent are supported by Alateen. Both organisations can be contacted on the helpline 020 7403 0888 (every day 10am-10pm). You can also check out their website at www.al-anonuk.org.uk.
The drugs helpline FRANK can give young people and adults information and support on any issues to do with drugs. Their helpline is free, confidential and open 24 hours a day on 0800 77 66 00. You can e-mail your problem to frank@talktofrank.com or go to their website at www.talktofrank.com. There's also a text service for the hard of hearing on 0800 917 8765.
The organisation Re-Solv runs a free helpline for anyone concerned about solvent or volatile substance abuse problems. You can call in confidence on 01785 817885 (Mondays to Fridays 9am-5pm). Their website is at www.re-solv.org.
Release offers support and information for people with drug problems, including prescription drugs. They provide a Release Drug Helpline on 0845 4500 215 (Mondays - Fridays 11am - 1pm, 2 - 4pm) and the Release Legal Helpline which advises on issues of drugs and the law on 0845 4500 215 (Mondays - Fridays 11am - 1pm). You can also email ask@release.org.uk or visit their informative website at www.release.org.uk.
CITA, The Council for Information on Tranquilisers and Antidepressants, provide support and information for people who have become involuntarily addicted to their prescribed tranquillisers. Go to their website www.citawithdrawal.org.uk.
Adfam provides support for the families and friends of drug users, offering information on drugs, the criminal justice system and local support groups. Go to their website at www.adfam.org.uk.
From 1st October 2007 it became illegal to sell tobacco products to people under the age of 18. This a change from 16 and includes cigarettes, cigars, tobacco for roll your own and pipes as well as rolling papers.
The NHS Smoking Helpline has all the advice, information and support you need to stop and stay stopped. The free helpline is on 0800 169 0169 (every day 7am-11pm) with trained counsellors available between 10am and 11pm. You can also find support on the website at www.gosmokefree.co.uk which includes specialist advice for pregnant women.
Quitline helps smokers who want to stop and people trying to remain as ex-smokers. Call free on 0800 00 22 00 (every day 9am-9pm). You can also e-mail them at stopsmoking@quit.org.uk or visit their website at www.quit.org.uk which has a very good section for young people.
Gamcare is a confidential counselling, advice and information service for people affected by a gambling dependency, including family and friends of compulsive gamblers. Phone their local rate helpline on 0845 6000 133 (every day 10am-10pm). You can also e-mail them at info@gamcare.org.uk or check out their website at www.gamcare.org.uk.
National Debtline provides a free, confidential and independent helpline for people with debt problems in England, Wales and Scotland. They can give expert advice over the phone as well providing a self help information pack. Call 0808 808 4000 (Mondays to Fridays 9am-9pm, Saturdays 9.30am-1pm). You can download a lot of the information from their website at www.nationaldebtline.co.uk.
Principles of Drug Addiction Treatment: A Research Based Guide
Frequently Asked Questions
Treatment varies depending on the type of drug and the characteristics of the patient. The best programs provide a combination of therapies and other services.
1. What is drug addiction treatment?
There are many addictive drugs, and treatments for specific drugs can differ. Treatment also varies depending on the characteristics of the patient. Problems associated with an individual's drug addiction can vary significantly. People who are addicted to drugs come from all walks of life. Many suffer from mental health, occupational, health, or social problems that make their addictive disorders much more difficult to treat. Even if there are few associated problems, the severity of addiction itself ranges widely among people.
A variety of scientifically based approaches to drug addiction treatment exists. Drug addiction treatment can include behavioral therapy (such as counseling, cognitive therapy, or psychotherapy), medications, or their combination. Behavioral therapies offer people strategies for coping with their drug cravings, teach them ways to avoid drugs and prevent relapse, and help them deal with relapse if it occurs.
When a person's drug-related behavior places him or her at higher risk for AIDS or other infectious diseases, behavioral therapies can help to reduce the risk of disease transmission. Case management and referral to other medical, psychological, and social services are crucial components of treatment for many patients.
The best programs provide a combination of therapies and other services to meet the needs of the individual patient, which are shaped by such issues as age, race, culture, sexual orientation, gender, pregnancy, parenting, housing, and employment, as well as physical and sexual abuse.
Drug addiction treatment can include behavioral therapy, medications, or their combination.
Treatment medications, such as methadone, LAAM, and naltrexone, are available for individuals addicted to opiates. Nicotine preparations (patches, gum, nasal spray) and bupropion are available for individuals addicted to nicotine.
The best treatment programs provide a combination of therapies and other services to meet the needs of the individual patient.
Medications, such as antidepressants, mood stabilizers, or neuroleptics, may be critical for treatment success when patients have co-occurring mental disorders, such as depression, anxiety disorder, bipolar disorder, or psychosis. Treatment can occur in a variety of settings, in many different forms, and for different lengths of time. Because drug addiction is typically a chronic disorder characterized by occasional relapses, a short-term, one-time treatment often is not sufficient. For many, treatment is a long-term process that involves multiple interventions and attempts at abstinence.
2. Why can't drug addicts quit on their own?
Nearly all addicted individuals believe in the beginning that they can stop using drugs on their own, and most try to stop without treatment. However, most of these attempts result in failure to achieve long-term abstinence. Research has shown that long-term drug use results in significant changes in brain function that persist long after the individual stops using drugs. These drug-induced changes in brain function may have many behavioral consequences, including the compulsion to use drugs despite adverse consequencesÑthe defining characteristic of addiction.
Long-term drug use results in significant changes in brain function that persist long after the individual stops using drugs.
Understanding that addiction has such an important biological component may help explain an individual's difficulty in achieving and maintaining abstinence without treatment. Psychological stress from work or family problems, social cues (such as meeting individuals from one's drug-using past), or the environment (such as encountering streets, objects, or even smells associated with drug use) can interact with biological factors to hinder attainment of sustained abstinence and make relapse more likely. Research studies indicate that even the most severely addicted individuals can participate actively in treatment and that active participation is essential to good outcomes.
Risk of Abuse and Addiction in Populations Without Drug Abuse Histories Extensive worldwide experience in the long-term management of cancer pain with opioid drugs has demonstrated that opioid administration in cancer patients with no histories of substance abuse is only rarely associated with the development of significant abuse or addiction.
Indeed, concerns about addiction in this population are now characterized by an interesting paradox. Although the lay public and inexperienced clinicians still fear the development of addiction when opioids are used to treat cancer pain, specialists in cancer pain and palliative care widely believe that the major problem related to addiction is the persistent undertreatment of pain driven by inappropriate fear of addiction.
The experience in the cancer population has contributed to a desire for a reappraisal of the risks and benefits associated with the long-term opioid treatment of chronic nonmalignant pain.The traditional view of this therapy is negative. Early surveys, which noted that a relatively large proportion of addicts began their addiction as medical patients who received opioid drugs for pain, provided some indirect support for this perspective
The most influential of these surveys recorded a history of medical opioid use for pain in 27% of white male addicts and 1.2% of black male addicts. Surveys of addict populations, however, do not provide a valid measure of the addiction susceptibility associated with chronic opioid therapy in populations without known abuse histories.
Prospective patient surveys are needed to define this risk accurately. The Boston Collaborative Drug Surveillance Project evaluated 11,882 inpatients who had no histories of addiction and were administered an opioid while hospitalized; only four cases of addiction could be identified subsequently.
A national survey of burn centers could find no cases of addiction in a sample of more than 10,000 patients without histories of drug abuse who were administered opioids for pain, and a survey of a large headache clinic identified opioid abuse in only 3 of 2,369 patients admitted for treatment, most of whom had access to opioids. Other data suggest that the typical patient with chronic pain differs significantly enough from the addict without painful disease that the risk of addiction during therapy for pain is low.
For example, surveys of cancer patients and postoperative patients indicate that euphoria (a phenomenon believed to be common during the abuse of opioids) is extremely uncommon following administration of an opioid for pain; dysphoria is observed more typically in those who receive meperidine Although the psychiatric comorbidity identified in addict populations could be an effect, rather than a cause, of the aberrant drug taking, the association suggests the existence of psychologic risk factors for addiction.
The likelihood of genetically determined risk factors for addiction has also been suggested by a twin study that demonstrated a significant concordance rate for aberrant drug-related behaviors. Overall, the evidence generally supports the idea that opioid therapy in patients with chronic pain and no histories of abuse or addiction can be undertaken with a very low risk of these adverse outcomes.
This is particularly so in the older patient, who has had ample time to reveal a propensity for abuse. There is no substantive support that large numbers of individuals with no personal or family histories of abuse or addiction, no affiliations with substance-abusing subcultures, and no significant premorbid psychopathologies will develop abuse or addiction when administered potentially abusable drugs for medical indications.
The inaccurate perception that opioid therapy always has a high likelihood of addiction has encouraged assumptions that are not supportable in populations with no histories of substance abuse. For example, agonist-antagonist opioid analgesics are less likely to be abused by addicts than pure mu agonist opioids. Consequently, some clinicians view the agonist-antagonist drugs as safer in terms of addiction liability.
There is no evidence for this conclusion in populations without drug abuse histories. Extensive experience with long-term opioid therapy for cancer pain and chronic nonmalignant pain has relied on pure mu agonists.
Similarly, there is a common perception that short-acting oral opioids and opioids delivered by the parenteral route carry a greater risk of addiction because of the rapid delivery of the drug. Again, these perceptions are derived from observations in the healthy addict population and are not relevant to the treatment of pain in medical patients with no histories of substance abuse.
Support After Murder and Manslaughter SAMM offers understanding, support and a listening ear and a shoulder to lean on and by being a safety net in times of severe emotional crisis.
The national charity which helps people affected by crime. They provide free and confidential support to help you deal with your experience, whether or not you report the crime.
Knife Crimes.Org
www.knifecrimes.org Home Office approved site offering information, advice, support and safety resources.
Crime
ASSIST (Assistance and Support & Self Help in Surviving Trauma)
Tel: 01788 560800 Mon to Fri, 10am to 4pm (24-hour answerphone)
Telephone support and counselling for people with post-traumatic stress disorder.
Crimestoppers
Tel: 0800 55 51 11
Independent Care After Incest & Rape (ICAIR)
Tel: 0121 449 9097 Weekdays 11am to 5pm Providing telephone/ one-to-one support/ postal support, to rape and abuse victims.
Rape Crisis Centre
Tel: 020 7916 5531
Support after Murder and Manslaughter (SAMM)
Tel: 020 7735 3838 Mon to Fri, 9am to 5pm To offer emotional support and understanding to families bereaved through murder and manslaughter.
Victim Support Line
Tel: 0845 30 30 900 Mon toFri, 9am to 9pm. Weekends 9am to 7pm Web: www.victimsupport.org Telephone helpline for anyone affected by crime. Trained staff and volunteers can advise on available Victim Support services and can put people in touch with local schemes and witness services as well as other appropriate agencies.
Youth2Youth
Helpline: 020 8896 36 75 Mon and Thurs 6.30pm to 9.30pm Web: www.youth2youth.co.uk Helpline run by young people for young people.
Inherited genetic variations that affect an anxiety-reducing molecule help explain why some people can withstand stress better than others, according to a new study.
Mood and anxiety disorders have been found by previous studies to have a genetic component. A nationwide team of researchers led by Dr. David Goldman of NIH's National Institute on Alcohol Abuse and Alcoholism (NIAAA) set out to investigate genetic variants of a signaling molecule called neuropeptide Y (NPY), which is induced by stress. Found in the brain and other tissues, NPY's release helps to reduce anxiety. It affects appetite, weight control and emotional responses. The researchers suspected that NPY variants might contribute to maladaptive stress responses that often underlie mood and anxiety disorders. Analyses of human brain and other tissue sam
cannot be kept.
