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Patient and Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  
     

Help for Patients and Caregivers : Alzheimers

Safety: Steps to Enhancing Your Home
Safety: Steps to Ensuring Safety
How to Be a Long-Distance Caregiver


Safety: Steps to Enhancing Your Home

Modifying the Environment
When caring for an individual with Alzheimer's disease at home, safety and accessibility can be important concerns. The person may experience changes in:

  • Judgment (forgets how to use familiar household appliances and equipment properly)
  • Orientation to time and place (gets lost on her own street or is unable to recognize or find areas in the home)
  • Behavior (becomes easily confused, suspicious or fearful)
  • Physical Ability (Has trouble with balance, or depends on a walker or wheelchair for mobility)
  • Senses (experiences changes in vision, hearing sensitivity to temperatures and depth perception)

With some creativity, flexibility and problem-solving, the home can be adapted to support these changes. This article provides simple steps to make the home safe and supportive for the individual with Alzheimer's.

Before modifying your home, consider the following:
Assess the environment. Identify possible hazards by looking at your home through the eyes of an individual with Alzheimer's. What objects could cause the person injury? Can the person easily get outdoors or access dangerous areas such as the kitchen, garage or basement?

Focus on adapting rather than teaching. Avoid reteaching the person with Alzheimer's about safety issues. Instead, identify potential risks and take the appropriate precautions.

Simplify the activities. Most accidents, especially in the area of personal care, occur when the person with Alzheimer's is rushed. Break activities into simple, step-by-step tasks allowing her plenty of time to complete them. Giving extra assistance, such as laying out clothes in the order that they are put on, will also help her with simple tasks that have become hard to do.

Support the person's needs. Try not to create an environment that is too restrictive. The home should encourage independence, social interaction and activities that are meaningful.

Be realistic about what you can do. You will never be able to prevent every problem. Rely on your common sense while paying close attention to objects or activities that could be dangerous.


CREATING A SAFE ENVIRONMENT

Once you have identified potential safety problems, take the following steps to modify your home.

MAKE POTENTIALLY DANGEROUS PLACES LESS ACCESSIBLE
The person with Alzheimer's may be at risk if she has access to certain areas of the home or the outdoors. The following action steps will help to make potentially dangerous areas more difficult to access:

Lock or disguise hazardous areas. Cover doors and locks with a painted mural or cloth. Use "Dutch" doors, swinging doors or folding doors to hide entrances to the kitchen, stairwell, workroom and storage areas.

Install locks out of sight. Place deadbolts either high or low on exterior doors to make it difficult for the person with Alzheimer's to wander out of the house. Keep an extra set of keys hidden near the door for easy accessibility. Remove locks in bathrooms or bedrooms so she is not able to lock herself inside.

Use special safety devices.
Child-proof locks and door knobs can help limit access to places where knives, appliances, equipment, cleaning fluids and other poisonous products are stored. Use automatic shut-off devices for appliances such as an iron, toaster oven and coffee maker.

Accommodate Visual Changes. As the disease progresses, changes in vision may make it difficult for the person to distinguish colors and understand what is being seen. Consider the following:
Diffuse bright light. Reduce glare by removing or covering mirrors, and glass-top or highly polished furniture. Cover windows with blinds, shades or sheer draperies to block bright sunlight. Avoid using bare light bulbs or clear "decorator" bulbs without shades. Taking these action steps may help to reduce agitation in the person with Alzheimer's.

Create an even level of lighting. Add extra lighting in entries, outside landings, areas between rooms, stairways and bathrooms because changes in levels of light can be disorienting to the individual with Alzheimer's.

Use different colors. Place contrasting colored rugs in front of doors or steps to help the individual anticipate staircases and room entrances. However, avoid using very dark colored rugs since it may be perceived as a hole. Apply colored decals to glass doors and large windows because she may think they are open doors.

Install special lighting. Use night lights in hallways, bedrooms and bathrooms to prevent accidents and reduce disorientation, especially if the person wanders. Illuminated light switches and timers for lights in these areas can also assist her at night.

BEWARE OF HAZARDOUS OBJECTS AND SUBSTANCES

Even the most basic appliance or household object can become dangerous to the person with Alzheimer's. To reduce risk of injury:
Limit the use of certain appliances and equipment. Remove electrical appliances such as an electric razor or a hairdryer, from the bathroom to reduce the risk of electrical shock.
Put away kitchen appliances and equipment including knives, mixers, grills, guns, lawn mowers or power tools, since the person may not remember how to use them safely. Also, consider removing the knobs on the stove or installing a hidden gas valve or circuit breaker so she can not turn on the stove.

Supervise smoking and alcohol consumption. Keep an eye on the person who uses cigarettes, cigars or pipes because she may not realize the dangers related to smoking. Monitor consumption of alcohol because it can have many negative effects, especially when mixed with medication.
Be prepared for the unexpected. Persons with Alzheimer's have been known to eat items such as small rocks, dirt, plants, flowers and bulbs. Take precaution by removing toxic plants and any decorative fruits (wax, plastic, etc.) that the person may think are real. Also, remove vitamins, prescription drugs, sugar substitutes and seasonings from the kitchen table and counters.
Keep the refrigerator safe. The person with Alzheimer's may not be able to distinguish the difference between fresh and rotten food. Clean out the refrigerator regularly and discard inedible food. Keep foods that are safe to eat in the front of the refrigerator and at eye level where she can easily see them.

Keep walking areas clear. Remove objects, such as magazine racks, coffee tables and floor lamps, to create safe wandering areas and reduce the possibility of injury.

AVOID INJURY DURING DAILY ACTIVITIES

Since a majority of accidents in the home occur during daily activities such as bathing, toileting, and eating, it is important to take special precautions.

Monitor temperatures. As the disease progresses, the person may have a decreased sensitivity to temperature. Consider setting hot water heaters at 120 degrees and installing automatic-mixing or anti-scalding devices to the faucets. Meanwhile, help her mix hot and cold water, and always turn off hot water first when finished. Also, it is important to check the temperatures of foods before serving to make sure that they are not too hot or too cold to consume.

Prevent falls. Install walk-in showers and grab bars in the shower or tub and at the edge of the vanity to enable the person to move around safely and independently. Shower seats and commode chairs are also helpful if she has limited mobility. Add textured decals to slippery surfaces and apply adhesives to keep throw rugs and carpeting in place, or remove them completely. Place padding on the edge of counters and bathroom fixtures if they are sharp.

Supervise taking prescription and over-the-counter medications. The person may experience many difficulties related to medication use, either forgetting to take them, or taking too much. Consider using locked pill dispensers operated on a self-timer to assist her. Make medicine or kitchen cabinets less accessible by installing locks.

CREATING A SUPPORTIVE ENVIRONMENT

While it is important to make the environment safe, it is equally important to create an atmosphere that supports the changing needs of the individual with Alzheimer's.

Encourage independent movement. Eliminate hazardous objects, limit access to danger-points such as stairwells, kitchens and outside doors so the person can move safely and independently. If necessary, make room to accommodate walkers and wheelchairs.

Involve the person in activities. Let her participate in preparing meals, rinsing the dishes, folding clothes, raking leaves and other activities with your supervision. These activities enhance self-esteem and make her feel more valued around the home.

USE SURROUNDINGS TO INITIATE ACTIVITIES
Leave out scrapbooks, photo albums or old magazines that help the person to reminisce and encourage conversation. Try using music the person once enjoyed in the past to prompt activities such as dancing, clapping or other types of exercises. It is important, however, to keep the noise level to a minimum since loud distracting sounds may cause agitation.

Create access to the outdoors.

Encourage the person to enjoy supervised outdoor activities such as gardening or walking. A backyard with a fence allows her to safely go outside on her own. If she is unable to go outdoors, consider doing indoor activities in a room with many windows or on an enclosed porch.

Be prepared for emergencies.

Keep a list of emergency phone numbers and addresses for the local police and fire departments, hospitals and poison control helplines. Check fire extinguishers and smoke alarms, and conduct fire drills on a regular basis.

If the person has a tendency to wander, enroll her in the Alzheimer's Association's Safe Return program. The program is a nationwide system designed to identify, locate and return to safety persons who are memory impaired

TIPS FOR CREATING A SAFE AND SUPPORTIVE ENVIRONMENT

Kitchen

  • Lock up cleaning supplies
  • Turn off electricity to the garbage disposal
  • Hide knives and other utensils
  • Put away the toaster, blender, and any small appliances
  • Unplug larger appliances such as the microwave
  • Remove knobs from stove or hook up stove to a hidden gas valve or electric switch
  • Keep fire extinguisher nearby
  • Clean out refrigerator regularly

Bathroom

  • Set water temperature at 120 degrees
  • Install grab bars
  • Apply textured decals on slippery surfaces
  • Supervise the use of hairdryers, electric and hand razors
  • Remove locks from the bathroom door
  • Discard dangerous items from the medicine chest

Bedroom

  • Avoid using electric blankets
  • Monitor use of heating pads
  • Install night lights between the bedroom and bathroom

Garage

  • Put away hand and power tools such as drills, axes, saws and picks
  • Limit access to large equipment such as a lawnmower, weedwacker and snowblower
  • Lock up poisonous products such paints and fertilizers

Throughout the home

  • Disguise outdoor locks or install deadbolts
  • Remove or tape down throw rugs and carpeting
  • Apply colored decals to large windows and sliding glass doors
  • Remove poisonous plants
  • Create an even level of lighting near doorways, stairways and between rooms
  • Remove object that block walking paths

Outdoors

  • Disconnect gas grills
  • Lock gates to fences
  • Supervise the person in areas that are not enclosed
  • Put away car keys


ALZHEIMER'S ASSOCIATION: SOMEONE TO STAND BY YOU
The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers. For more information call: (800) 660-1993

http://www.alzoc.org

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Safety: Steps to Ensuring Safety

Preventing Wandering and Getting Lost
When someone with Alzheimer's disease wanders and becomes lost, it is a frightening experience that puts that person at risk for serious or fatal injury. This article offers ways to prevent unsafe wandering and to prepare for an emergency situation.
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Wandering can be aimless or purposeful roaming that can cause a person to become lost, leave a safe environment, or intrude in inappropriate places.

Wandering is one of the most frequent and challenging problems that caregivers face.
Seven of every ten people with dementia will wander and become lost during the course of the disease, and most will do so repeatedly.

Someone with Alzheimer's disease may not only wander by foot but also by car or other mode of transportation.

Understanding Wandering

Wandering may be triggered when a person with Alzheimer's:

  • no longer recognizes familiar people, places, and objects
  • feels lost in a new or changed environment
  • tries to fulfill former obligations, such as going to work or taking care of a child
  • takes medications that have side effects such as restlessness and confusion
  • tries to relieve stress caused by noise, crowds, or isolation .
  • is restless due to lack of physical activity
  • is fearful of unfamiliar sights, sounds, or hallucinations
  • searches for something specific such as food, drink, the bathroom, or companionship
  • looks for a way out of the home
  • experiences confusion at certain times of the day or night

Preventing Wandering
It is hard to predict when a person will wander and become lost. However, caregivers can take steps to prevent wandering incidents.

Structure the Day
Establishing a daily routine that includes meaningful activities and sufficient physical exercise can help lessen wandering behavior. Ask the person to help with simple household activities such as sweeping the floor or folding clothes. Also try playing familiar music and dancing or taking walks together outdoors.

Making Your Home Safe
To prevent unsafe exits from the house or backyard, place door and window locks out of sight and reach, either very high or very low. Use a double-bolt door lock, and keep the key handy in case there is an emergency. You may also want to:

  • install high-tech devices such as electronic buzzers or bells to signal when a door is opened or place a pressure-sensitive mat at the door or person's bedside that sounds an alarm to alert you to movement.
  • put hedges or a fence around your patio or yard and be sure to place locks on any gates.
    Inform Your Community

Talk to Your Neighbors
Alert your neighbors about the person's condition, and keep a list of their names and telephone numbers. Ask that they call you if they see the person outdoors without supervision. Also inform others such as the doorman in your apartment building or staff in the senior residence or retirement community where your loved one resides.

Involve Your Local Police
Tell your local police about your loved one's potential for wandering. Advise them that the Alzheimer's Association has a national Safe Return program to help police locate or return someone who is lost from wandering.

Survey the Neighborhood
Identify dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops, high balconies, and heavy traffic roads. Check these places first if someone becomes lost.

Be Prepared For A Wandering Incident
Take steps in advance to prepare yourself in the event that your loved one becomes lost.
Gather Important Information

Having reliable and accurate information will help those involved in a search:

  • Post the Alzheimer's Association checklist of what to do when the person in your care becomes lost.
  • Keep a list of the person's age, height, weight, hair color, blood type, eye color, identifying marks, medical condition, medication, dental work, jewelry, allergies, and complexion.
  • Make multiple copies of a recent close-up photograph.
  • Make a list of places the person may go, such as familiar walking routes, former neighborhoods, places of worship, workplaces, or favorite places.
  • Keep scented clothing on hand to give to police. Wearing plastic gloves, store a piece of the person's unwashed clothing in a bag where it will not be disturbed. Replace it monthly to retain the scent.
  • Make a list of possible dangerous areas you have identified in the neighborhood.

Register in the Safe Return Program
One of the most serious worries for a caregiver is whether the wandering person will return home safely. The Alzheimer's Association Safe Return program is the only nationwide system that helps identify, locate, and return individuals with Alzheimer's and related disorders who wander and become lost.

Safe Return provides:

  • Identification products for the memory-impaired, including a bracelet or necklace, clothing labels, and wallet ID card. These products alert others that the individual is memory-impaired and may need assistance and also list the Safe Return 24-hour crisis number.
  • Registration in a national database including important information that can be accessed quickly when someone wanders and gets lost. This information can be critical in helping law enforcement agencies and others in their search.
  • Connection to more than 200 community-based Alzheimer's Association Chapters across the country that offer assistance and support. Some chapters have scholarship programs to help pay for the registration fee.

To register:
Complete a Safe Return registration form. To obtain a copy, contact your local Alzheimer's Association: call (800) 660-1993 or download the form from the Association's Web site.

Tips to Prevent Wandering

  • Check to see if the person is hungry, needs to go to the bathroom, or feels uncomfortable.
  • Encourage movement and exercise to reduce anxiety and restlessness.
  • Involve the person in daily activities such as folding laundry or preparing a meal.
  • Remind the person that you know how to find him and that he's in the right place.
  • Reduce noise levels and confusion.
  • Reassure the person who may feel lost, abandoned, or disoriented.
  • Alert police ahead of time that you care for a person with dementia.
  • Make a plan of what to do if the person becomes lost.

Additional Resources

The following materials are available from your local chapter or the national office of the Alzheimer's Association:

  • Just the Facts and More-Wandering
  • Steps to Planning Activities: Structuring the Day at Home
  • Steps to Enhancing our Home: Modifying the Environment
  • Steps to Enhancing Communication: Interacting with Persons with
  • Alzheimer's disease
  • Services You May Need Fact Sheet
  • Safe Return Brochure
  • Alzheimer's Disease: A Guide for Law Enforcement Officials

The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers.

Founded in 1980 by family caregivers, the Alzheimer's Association has more than 200 chapters nationwide providing programs and services, including support groups, to assist Alzheimer families in their communities. The Association is the leading funding source for Alzheimer's research after the federal government.

Information on Alzheimer's disease, current research, caregiving techniques, and assistance for caregivers is available from the Alzheimer's Association. For more information call: (800) 660-1993.

http://www.alzoc.org/support

<<Top of Page>>

How to Be a Long-Distance Caregiver

I am miles away.
If you are caring for someone who lives far away, you are not alone. Currently, more than six million Americans are long-distance caregivers.

Long-distance caregiving for someone with Alzheimer's disease can be especially difficult. Concerns about your loved one's safety, nutrition, health and care may seem overwhelming. You may also feel guilty and anxious because you cannot be there every day to see how the person is doing. However, with the right mix of services, ongoing coordination and support, long-distance caregiving can work.

How can I help?

How do I know what services are needed?
Visit the person with Alzheimer's disease to determine what kind of assistance he or she may need. Make the following observation:
  • Is there appropriate and adequate food available?
  • Is the person eating regular meals?
  • What is the condition of the living environment? Has it changed?
  • Are the bills paid?
  • Do friends and relatives visit regularly?
  • Is the person maintaining personal care routines such as bathing and grooming?
  • Is the person still able to drive safely?

    If you are unable to answer these questions, the person's doctor, neighbors, family members and friends can be good sources of information.

    How do I make the most of my visits?

    Few long-distance caregivers are able to spend as much time with their loved one as they would like. The key is to make periodic visits and use your time effectively:
  • Make appointments with your loved one's physician, lawyer, and financial adviser during your visit so you can facilitate the making of important decisions.
  • Meet with neighbors, friends, and other relatives so they can share their observations about how the person is doing. Ask if there have been any behavioral changes, health problems, or safety issues.
  • Take time to reconnect with your loved one by talking, listening to music , going for a walk, or doing other activities you enjoy together.

    What support systems are available?

    There are many individuals and organizations that can help you locate and arrange appropriate services for your loved one.
  • Alzheimer's Association chapters provide information on caregiving, referrals to local services, a Helpline , and support groups. To locate the chapter nearest you, call (800) 660-1993.
  • Geriatric care managers can help assess the individual's needs, identify local services, and work with physicians, attorneys, and other professionals to oversee and coordinate care. For more information, call the National Association of Professional Geriatric Care Managers at (520) 881-8008.
  • Eldercare Locator is a free service provided by the U.S. Administration on Aging to help find local resources such as adult day programs, respite care elder abuse/ protective agencies, Medicaid/MediCal information, and transportation. To learn more, call (800) 677-1116 or call your local Chapter.
  • Home health care workers can be hired to help the person with bathing, toileting, preparing meals, and taking medication. Call your local chapter of the Alzheimer's Association for more information.
  • The local Area Agency on Aging (AAA) has services to help with long-distance caregiving, such as home observation programs. Check with your AAA to see what programs are available in your area.

    Who else can I turn to for support?
    Establishing an informal support system can help ensure the person's safety and give you peace of mind.
  • Family members and friends can provide companionship. Ask them to visit once a week or so, depending on how far away they live.
  • Neighbors can regularly check on your loved one. Ask if they will remain alert to anything unusual such as the smell of smoke or the sound of an alarm coming from your relative's home.
  • Community organizations such as churches, synagogues, neighborhood groups, and volunteer organizations often provide companion services.

    What if I need to take time off from my job?
    Sometimes you may need to take time off from work to resolve a crisis, accompany your loved one to a doctor's appointment, or address a pressing legal or financial matter.
    With more than three million working Americans caring for elderly parents, both government agencies and private businesses are trying hard to meet the needs of caregivers.
    The Family and Medical Leave Act (FMLA) entitles eligible employees to take up to
    twelve weeks unpaid leave. Check with your employee benefits department to see if you are covered by FMLA. Also be sure to ask them about the benefits provided by your state.

    Should I move the person with Alzheimer's disease to my home?
    The decision to move the person to your home is influenced by many factors. Here are some things to think about before moving the person into your home:
  • Does he or she want to move? What about his or her spouse?
  • Is your home equipped for this person?
  • Will someone be at home to care for the person?
  • How does the rest of the family feel about the move?
  • How will this move affect your job, family and finances?
  • What respite services are available in your community to assist you?
    Moving a person with Alzheimer's disease from familiar surroundings may cause increased agitation and confusion. In making the decision, you may want to talk with your loved one's physician or a social worker or call your local Alzheimer's Association chapter for assistance. In some situations, an assisted living or a residential care setting may be a better option for the individual.

    What if I care for a person who lives in a care facility?

    Whether your loved one lives in an assisted living or residential care facility, it is important to maintain ongoing communication with the care staff and friends who visit regularly. Here are some suggestions:
  • Work with the managing nurse and physician. Agree on a time when you can call to get updates on the person's condition.
  • Call family, friends, or other visitors and ask for their observations.
  • When you visit, meet with the staff members who care for the person most.

    What if I am not the primary caregiver?
    The primary caregiver may be a spouse, sibling, or another relative that lives with or close to the person with Alzheimer's. As a long-distance family member, supporting the primary caregiver is one of the most important things you can do. Here are some ways to help:
  • Stay in close touch with both the caregiver and the person with Alzheimer's through telephone calls, cards, e-mail, etc.
  • Recognize that the primary caregiver must make final decisions. He or she provides the daily care and is usually the best person to decide what needs to be done.
  • Take on caregiving tasks. You can help by handling bills, completing insurance forms, making phone calls, and finding out what support services are available in the caregiver's community.
  • Plan periodic visits to give the caregiver a break. You can spend time with the individual or run errands for the caregiver.

    How do I deal with family conflicts?
    It is possible that the primary caregiver may feel resentment toward you for living far away or believe you are not helping enough. And you may disagree with the caregiver's decisions or feel shut out. To minimize conflicts, try to acknowledge these feelings and work through them. Here are some suggestions:
  • Have a family meeting. Talking about caregiving roles and responsibilities, problems and feelings can help ease tensions. You may want help from a professional counselor or clergy.
  • Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
  • Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member's preferences and abilities.
  • Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer's and the caregiver, and decide if any changes in responsibilities are needed.

    What additional resources are available?
    The following resources are available from your local chapter or the national office of the Alzheimer's Association:
  • Respite Care guide: How to Find What's Right for You
  • Steps to Understanding Legal Issues: Planning for the Future
  • Steps to Understanding Financial Issues: Resources for Caregivers
  • Steps to Enhancing Communication: Interacting with Persons with Alzheimer's disease
  • Residential Care: A Guide for Choosing a New Home

    The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers.
    Founded in 1980 by family caregivers, the Alzheimer's Association has more than 200 chapters nationwide providing programs and services, including support groups, to assist Alzheimer families in their communities. The Association is the leading funding source for Alzheimer's research after the federal government.
    Information on Alzheimer's disease, current research, caregiving techniques, and assistance for caregivers is available from the Alzheimer's Association. For more information or to locate the chapter nearest you call: (800) 660-1993.

http://www.alzoc.org/support

 

 


CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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