The Prepared Family Guide to Uncommon Diseases

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Make friends. Join a club. Stay connected. A large body of scientific research shows that social interaction — having strong, happy relationships with family, friends and community members — is an important factor in good health and longevity. Researchers who studied 7, men and women in Alameda County, Calif.

Research has shown that people with close social ties who had unhealthy habits like smoking and lack of exercise actually lived longer than healthy people who were more isolated. Obviously, friendship can only go so far. On average, people with healthful lifestyles and close relationships live the longest.

And friendships can get you through the inevitable health setbacks that occur with aging. A study of 2, men who survived heart attacks , found that those with strong personal connections were far more likely to stay alive over the next three years of follow-up. A number of other studies have shown the same trend. In one report of adults with coronary artery disease, people who were socially isolated had nearly three times the death rate compared with those with strong relationships.

Why are close friends and family ties good for us? They give us emotional support that can help us cope with stress. They can be a positive influence, helping us create healthy habits. Studies show friendships give us higher self-esteem, greater empathy for others and make us more trusting and cooperative.

And perhaps most important: As we age, our friends and family give us a sense of purpose and a reason to keep getting up in the morning. To retire or not to retire? Studies show that people who keep working well into their 70s and beyond tend to have better health and stay more socially connected.

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Even so, most research supports the idea that staying busy, maintaining social connections and finding meaning and purpose in your daily routine are all part of healthy aging. Studies also suggest that the type of work matters. If you find work fulfilling and enjoy the company of your colleagues, you should consider sticking with it. If your job is backbreaking or high stress, consider checking out around retirement age — but make a plan for your second act. Volunteer or find paid work somewhere that will keep you active, engaged and give you a reason to get up in the morning.

Retiring after years of work can feel like a heady vacation at first. But eventually, not working can take a toll on mental health. One study found that the negative effects of retirement — defined as a range of depressive tendencies such as lack of appetite, lapsed concentration, fatigue and so on to clinical depression — start to appear after the first few years of ceasing to work. The main benefit of work may be the social network it offers. A Syracuse University study found that people who continued to work past retirement age enjoyed an increase in the size of their networks of family and friends of 25 percent.

The social networks of retired people, on the other hand, shrank during the five-year period. One study of school volunteers over age 50 found that volunteering was linked with better physical health and cognitive gains from interacting with children. Get the best of Well, with the latest on health, fitness and nutrition, delivered to your inbox every week. See sample Privacy Policy Opt out or contact us anytime. Nothing can guarantee you a longer life, but there are a few simple practices that will improve your odds of aging well.

Most sun damage occurs in our youth, but it makes sense to cover up and avoid excessive sun exposure at any age. Other research shows that for light-skinned people, slathering on sunscreen really does prevent or at least delay wrinkles. Studies show that 20 percent to 30 percent of medication prescriptions are never filled, and that approximately 50 percent of medications prescribed for chronic diseases are not taken as prescribed.

Many people who fill their prescriptions only take half the prescribed dose. This lack of adherence is linked to an estimated , deaths and at least 10 percent of hospitalizations. Some research has tried to figure ou t who is most likely to take their meds and who is not.

People who have been in a job or home for only a short period of time are at higher risk of not taking their medications correctly. Social support is also a factor. People who live alone or are unmarried are more likely to skip medications or not fill prescriptions. Often they can give you samples, coupons or have a hospital social worker contact the drug company to see if you qualify for an assistance program. Fill your prescription, take your meds and put yourself on a path toward better aging.

Arthritic hands may struggle with small buttons or gripping the wheel. The American Automobile Association has created a very useful interactive guide to help older drivers identify the makes and models of vehicles within various price ranges that may best suit their particular issues. At SeniorDriving. For those with various vision problems common among older people, for example, features like a high-contrast instrument panel with large number and letter displays, an auto-dimming rearview mirror and glare-reducing side mirrors can enhance driver safety.

Falls are the leading cause of injury among Americans over age Each year, nearly one-third of older adults experience a fall , and 20 to 30 percent of them wind up with injuries ranging from broken teeth to broken hips. Falls and their accompanying serious and less serious injuries can precipitate a cascade of medical problems, the onset of severe disability, and the end of independent living and the beginning of round-the-clock care. First, you should improve your fitness and balance to minimize your chance of falling. Then you should plan for the right way to fall.

Balance training has been shown to reduce fall risk by 50 percent. Talk to your doctor about your risk and work with a trainer, therapist or take an adult fitness class to improve balance. Exercises like tai chi have been shown to improve balance. Other balance exercises include walking backward and sideways.

Walk on just your heels and then your toes. Practice standing from a sitting position without using your arms to push yourself up. If you do fall, you can plan for the right way to do it. Check your house for potential hazards an occupational therapist can help you with this. And pet lovers need to be mindful that their furry friends are a major risk factor for falls.

Dogs and cats cause more than 86, falls requiring emergency room care each year. Be aware of the four-legged hazard in your midst as you age. Tara Parker-Pope is the founding editor of Well, an award-winning consumer health site with news and features to help readers live well every day. Twitter: nytimeswell. Eat Small changes in your eating habits can lower your risk for many of the diseases associated with aging. Avoid Processed Meat Processed meats like hot dogs and sausages have been salted, cured or smoked to enhance flavor and improve preservation.

Skip Packaged Foods The best eating strategy for aging well is to skip processed foods and beverages. What About Supplements? A Month Without Sugar December 30, Move A body in motion will age better than one on the couch. Exercise in Intense Intervals High-intensity interval training is less intimidating than it sounds. Lift Weights Weight lifting can help you maintain muscle mass and stronger bones as you age.

Exercise for Younger Skin Exercise not only helps keep the inside of your body healthy, it also appears to slow and even reverse the effects of aging on your most visible organ — the skin. Learn more. Skip to main content. Search form Search. You are here Home. Order this publication. Printer-friendly version By Family Caregiver Alliance. Introduction Caregiving takes many forms. In your family, for example, are you the person who: Buys groceries, cooks, cleans house or does laundry for someone who needs special help doing these things?

Helps a family member get dressed, take a shower and take medicine? Helps with transferring someone in and out of bed, helps with physical therapy, injections, feeding tubes or other medical procedures? Makes medical appointments and drives to the doctor and drugstore? Talks with the doctors, care managers and others to understand what needs to be done? Spends time at work handling a crisis or making plans to help a family member who is sick?

Is the designated "on-call" family member for problems? Caregiving roles and demands are impacted by a number of other factors, including: Type of illness. Caring for someone with Alzheimer's disease, other dementias, or other brain-impairing disorders can be more stressful than caring for someone with a physical impairment.

Long-distance caregiving is usually defined as care provided by a caregiver living more than an hour away from the care recipient. Caring from a distance is difficult both emotionally and logistically, and is most common in situations where adult children and their parents do not live in the same area. In these cases, the caregiver's role is not as much "hands-on" as it is gathering information about available resources, coordinating services and putting together a "team" of family, friends and paid help that can meet the care recipient's needs.

Urban versus rural settings. Caregivers living in rural settings face unique challenges. These include fewer available formal services, fewer physicians and health education services, transportation difficulties, weather problems in winter, geographic distance and isolation. The United States' great diversity means that families bring their own histories, traditions and rituals to caregiving. In many cultures, there are family expectations about the caregiving roles of adult children; this is especially true in cultures where daughters or daughters-in-law are expected to assume the primary caregiver role for aging parents.

Five steps that can help are: Start with a diagnosis. Learning about a family member's diagnosis helps caregivers understand the disease process and plan ahead realistically. Talk about finances and healthcare wishes. Having these conversations can be difficult, but completing Durable Powers of Attorney for finances and healthcare can help relieve anxiety and better prepare for the future.

Consider inviting family and close friends to come together and discuss the care needed. If possible, it's helpful to include the care recipient in this meeting. This meeting gives caregivers a chance to say what they need, plan for care and ask others for assistance. Take advantage of community resources such as Meals on Wheels and adult day programs.

These resources help relieve the workload and offer a break. Look for caregiver educational programs that will increase knowledge and confidence. Find support. The most important thing is for caregivers to not become isolated as they take on more responsibility and as social life moves into the background. Online and in-person groups can be very helpful in connecting with others in the same circumstances. Caregivers can call Family Caregiver Alliance at to learn about local services, or visit www.

Data from many studies and reports reveal the following information about caregivers: The "typical" U. In a study, caregivers were found to spend an average of 4. The cost to businesses because of partial absenteeism e. A national agenda is needed that: Supports the National Family Caregiver Support Program NFCSP to provide caregivers with information and assistance, counseling, support groups, respite, caregiver training and limited supplemental services. Funds Lifespan Respite Care so that family caregivers can take a break from the demands of providing constant care Expands the Family and Medical Leave Act FMLA and paid leave policies to increase financial support for workers providing essential care for family members.

Promotes financial incentives, career advancement, geriatric education and training, and long-term care policies to expand the geriatric care workforce. Enacts legislation providing refundable tax credits for family caregivers to defray long-term care costs and compensate for expenses that family and informal caregivers at all income levels incur. If symptoms persist, ask the psychiatrist or other health professionals about other things the person can do to help cope with them.

Make sure everyone understands the illness and its effects, and that no one is to blame. Encourage others to:. It helps to write these down together with important numbers to call in a crisis, so that everyone has a common understanding of what to do. Mental illness sometimes divides family and friends — just when you all need to pull together. If this happens, encourage everyone involved to talk openly. Is there something everyone likes doing together where they will be more relaxed, such as going for a picnic? Let everyone speak and feel they are being listened to, including the person with the illness.

Carers Associations also have counselling services especially for family and friends who provide care. All family members have needs for attention and affection, and for respite from caring. Everyday things like getting up in the morning or shopping can be challenges for people seriously affected by mental illness. Providing structure, keeping things simple and having fun, help everyone to cope. Regular times for getting up and dressed, eating and doing other things help provide a safe, familiar routine and a structure for the day.

Routines should be predictable but not rigid, with gradual changes to prevent boredom. Jo stays in bed until the afternoon. Her father is angry. Please come down — we like having you with us at mealtimes. This makes tasks more manageable. Over time, try to encourage them to do these things themselves, one at a time.

If the person shows no interest in doing things, or in other people, it may be because of their illness. Try again the next day. Remember, too, that lethargy may be caused by other reasons such as low iron or hormonal factors. A full medical examination will show if any of these is relevant. People may keep changing their mind, or take a long time to decide about things that seem minor to everyone else. If the person is at a stage where they need encouragement to make a decision, allow time for them to do so. This shows respect for their ability to make decisions and promotes confidence in themselves.

I look fat and ugly. But remember we leave in half-an-hour, so be ready to go. Gentle introduction of new routines, new people, new activities and surroundings count as stimulation. Make it slow and gradual - too much too soon may seem disturbing. Timing the introduction of something new is important. Where possible, start when the person shows any interest in an activity. Be encouraging. Begin with everyday things that can be done with familiar people — for example, ask them to come shopping to help carry bags, or to join in a simple game like table-tennis or frisbee.

They may not seem to enjoy it at first - this often comes later, when they feel more comfortable. Remember the balance — too much stimulation can be stressful and trigger symptoms, but with too little stimulation, the person may not function as well. Encourage them to work out what makes their symptoms worse — for example, late nights or noisy shopping centres — so you can find ways of dealing with them. Think how rarely people with a mental illness are praised — and how much we all appreciate praise.

Remind the person that joining in any activity, however small, is a step forward. Genuine praise and warmth are helpful. Make what you say easy to understand — but without being patronising. Write information down, rather than expect them to remember it. Explain why — but try not to be apologetic or feel guilty. However, encourage them to keep in touch with family and friends, no matter how briefly.

Help them make new friends, for example through rehabilitation or recreation programs, where they can meet others and learn new skills. Encourage family and friends to keep in touch with the person who is ill too. Loneliness is a distressing aspect of mental illness — simple friendliness from others helps people recover and feel part of society again.

Pet animals can also provide companionship. Having a dog encourages going for a walk and getting exercise once or twice a day, and is a also a good way of meeting and chatting to other people, in a park for example. Involve the person with the illness in social events, but understand how hard this may be — reclusiveness may be a way of lowering stress and reducing symptoms. Respect this by not nagging them to socialise. Acknowledge the need for time alone, but encourage them to mix with others occasionally — for an hour or two a day, perhaps, or on certain days of the week.

New friendships may sometimes lead to sexual relationships. Talk openly about safe sex and contraception — get advice from a GP or case manager if you need it. Some people with a mental illness may be preoccupied with sex, especially during episodes of severe illness, while others hardly think about it. Some find that medication depresses interest in sex or makes it more difficult. Families sometimes worry unduly about sexuality. As with the population as a whole, some people with a mental illness use drugs such as alcohol, nicotine, cannabis, LSD, amphetamines speed or ice , ecstasy or heroin.

Everyone involved in care, as well as the person who uses the alcohol or drugs, needs to understand that they can worsen the effects of symptoms and make treatment and caring more difficult. They may also be illegal. Addiction to nicotine is a major problem for many people with a mental illness, having a major effect on their finances as well as their physical health. If alcohol or other drugs are a problem, suggest other ways of tackling the reasons they are used — talking to their doctor about adjusting medication or meeting new friends through rehabilitation or recreation programs, for example.

It may help if someone with similar experiences, who has given up alcohol and drugs, can talk to the person about the advantages of not using them. Avoiding alcohol, tobacco and other drugs could be part of an agreement for living at home. Consult the person you care for about a crisis plan as well as with health professionals, family and friends.

Give everyone concerned a written copy of the plan, and keep it handy at all times. It should include the following and be reviewed at least annually:. People with mental illness sometimes think or talk about suicide. While such thoughts are not uncommon among people with mental illnesses, they do not always mean the person will take action — however, it is important to always take this seriously. Remember that the period when someone is recovering from an episode of depression or psychosis can be a risky period, as well as when they are severely ill — especially if they have been discharged recently from hospital.

Remember that the Lifeline crisis telephone service is available hours a day on 13 11 The person may tell untrue stories to one person about mistreatment by other relatives or friends, or may play on existing weaknesses so that people turn against each other.

This behaviour may be caused by delusions. It may be an unconscious way of gaining control over a seemingly chaotic world. But it can be harmful to everyone, including the person with the illness. Aggressive or violent behaviour is absolutely unacceptable, and the personal safety of you and everyone else in the family is paramount. Violent or aggressive behaviour can be caused by:. Report actual or threatened violence to the health professionals and, if necessary, call the police on If you believe someone may harm themself or others, make this very clear to the health professionals.

If you feel your concerns are not taken seriously, put them in writing. Send copies of your letter to others such as the area mental health service manager, and even local MPs and State Health Ministers. A person may use aggression to make you do what they want — if they get their own way it encourages them to continue.

Get professional help. If you live with someone who persistently behaves aggressively despite offers of help to deal with this, then discuss what can be done with the case manager or other health professional. Review what would be the best long-term living arrangements for both of you, and in some cases an intervention order may be necessary to ensure your safety.

Anyone can develop a mental illness. But when a close relative is affected, you may worry that you or your children will develop the same condition. Just as we can reduce our risk of physical problems like heart disease, we can also be sensible about the possibility of mental illness, by avoiding risk factors such as drugs and learning to manage stress, for example.

Try to accept the interests and needs of the here-and-now person. This is a more helpful basis for a good relationship. The more we understand this, the easier it is to relate to the person.

Learn about the illness. Acknowledge that your feelings are valid and just as important as those of other family members. Face up to negative emotions like anger and resentment. They are normal and understandable. Most parents look back and wonder whether they could have done a better job of parenting.

This can be especially true for parents with a child who develops a mental illness. Try not to dwell on this. It makes it hard to move forward. Parents sometimes feel trapped in a never-ending parenting role.

Families, friends & carers

This is more likely if the person developed the mental illness as a teenager. But once you start talking about it, it does get easier. You may be surprised at how supportive others are — and how many other people want to share their own experiences with mental illness in the family. When you talk you encourage others to do the same.

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Have regular health checks, and try and share the load as much as possible by enlisting support from friends and professionals. Try to have time out. Care for your relationship with your partner. Having a son or daughter with a mental illness can put pressure on your relationship with your partner, although it can also draw you closer together.

Try to maintain your focus on living and enjoying your own life. If your son or daughter with a mental illness has children of their own, you may need to help care for grandchildren for long periods or even long-term. Looking after a small child again can be a challenging as well as a positive, loving experience. Make sure you get support for yourself — this may be legal, financial, emotional support, or help with childcare or respite.

Meeting other grandparents in the same situation can help by providing an opportunity to share experiences and help you feel less isolated. Having a partner with a mental illness means people often neglect their own emotional and other needs. As well as a regular carer support group, find out if there are any partner support groups in your area too — people who are in a similar situation can be a great help to each other.

It can be especially demanding to care for someone when there are children as well, especially if they are young. Do not be shy of reaching out to ask for support from others, whether family, friends, neighbours or teachers, for example.

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Having a brother or sister with a mental illness can be difficult. There may be unkind comments at school. Schoolwork may suffer. Families should make time for young siblings to talk about their concerns. Involve them as much as possible in discussion and planning. Calm any fears that they may develop a mental illness themselves.

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As adults too, people whose brother or sister has a mental illness often report a sense of frustration. When they do try to help it may not seem to make a difference, and there may be concern about taking primary responsibility for caring when parents are no longer able to do this. See Reachout for more information and support for young people. Having a parent with a mental illness can be confusing to children. Because there are no obvious physical symptoms, mental illness is hard to explain when their only experience of sickness may be a band-aid or a brief visit to the doctor.

Unexplained changes in behaviour or emotions caused by symptoms may be confusing or disturbing. A long-term plan needs input from others - the person you care for, family, friends, and health professionals. Consider what legal steps you will need to take now, such as making a will, for example. Services may change over time and the plan will need updating. Keep all the information in a folder, together with names and phone numbers.

Discuss your plan with the psychiatrist, case manager, social worker, GP and other relevant people. The plan may include wishes you have expressed in your will and that of other family members; possible roles for an administrator or guardian, and the setting up of a special trust. People with a mental illness often have few friends or social contacts, and rely on family for support. People with a mental illness often feel powerless — helping them get support outside the family can empower them and reduce loneliness. Support from others is also important for family and other carers, reducing the sense of isolation and burden, and lessening anxieties about the future.

A support network can include health professionals, family, friends, staff at psychiatric disability support and other community agencies, employment agencies, advocates — even friendly staff in shops and other services. The case manager or other mental health worker may be able to suggest others. Have a list of support people with contact numbers, so the person you care for and others know whom to contact.

Writing a list can show up gaps. For example, does the person have a regular GP? Is there someone at Centrelink or the bank who can be asked for by name to help? Creating a support network is part of planning ahead. If someone is unable to manage their affairs because of mental illness, an administrator may be needed. Ideally, an administrator should know the person. A guardian is someone legally appointed to make decisions for someone else, to ensure they get the support and care they need.

They may be a relative, friend or other trusted person, who knows the person with the illness and understands their values and needs. Public advocates have been appointed in each State and Territory to defend the rights of people with a disability. They can deal with complaints about care or treatment, exploitation or lack of services, and can help represent people with disabilities at boards and tribunals.

Setting out your wishes in a will saves confusion and heartache after you die, especially for the person you care for. Making a will means you decide how your property will be dealt with. It means your property is divided among family members according to a formula set out in law, not according to your wishes. A will is especially important if you care for someone with a mental illness.