Caring For an Aging or Disabled Family Member
Caring for an aging loved one is something you hope you can handle when the time comes, but it's the last thing you want to think about. Whether the time is now or somewhere down the road, there are steps that you can take to make your life (and theirs) a little easier.

Understand Your Situation
 

When it comes to caregiving, knowledge is power. And power brings peace of mind.

Know what you’re dealing with. Hire a professional to assess your spouse’s current condition and future prospects.

Depending on the nature of the condition, your spouse may have trouble getting around the house, driving, or remembering the things they used to. Your first step: Get a professional assessment of their cognitive and physical abilities.

An assessment can help your spouse live at home longer. It can also prevent accidents and producer a longer and high quality lilfe. It's never easy to recognize when a family member needs help. Learning how to assess their needs will make it easier to help.

Assessments should focus on the following areas:

  • Physical Health. Does your spouse have chronic diseases, such as diabetes, high blood pressure, arthritis, or emphysema. What other diseases have they had: bowel or bladder problems, heart disease, stroke, or cancer? How is their vision or hearing? Have they had excessive weight loss or gain or trouble walking? List all of the person’s health professionals, as well as recent hospitalizations.
  • Mental Health. Has your loved one been diagnosed with psychiatric disorders such as depression, anxiety or psychosis? With Alzheimer's or another form of dementia? Is he or she getting confused, disoriented, or socially isolated? Suffer from mood swings or forgetfulness?
  • Medication Use. What medications is the person taking, their dosages, and how often. Include over the counter medications and supplements. Do they have trouble taking medication as directed?
  • Daily Living Skills. If your spouse is having problems dressing, bathing, getting up from a chair, using a toilet, climbing stairs, or using the phone, consider ways to make the home safer. If that’s not feasible, consider bringing in outside help. Other issues to consider: handling of emergencies, cooking, shopping, and driving.
  • Home and Community Safety. Do you live in a safe neighborhood? Does the home have smoke alarms? Can your spouse hear them? Is the individual susceptible to telephone and door-to-door fraud? Able to do home indoor and outdoor home maintenance?
  • Support Systems. Friends, family, and activity are crucial. Does your spouse have frequent visitors and friends? Does he or she go to a Senior Center and get out socially? Do other family members live close by? Can you quickly contact key friends and family members in cases of emergency?
  • Interests/Lifestyles. Does your spouse still enjoy hobbies, stay engaged with current events, go to movies or church?

The above items will help you think broadly about your loved one’s needs. However, you may want to consider hiring a professional to conduct a more rigorous assessment. Get referrals from your healthcare professional, local senior center, hospital, or agency on aging.

Talk to Your Spouse
 

In difficult times, communications is crucial. Reach out to your spouse now.

A married couple should always talk. But in times of illness or disability, good communication will keep your marriage from going bad.

The first step you need to take is talking to your spouse. Find out what he or she wants. In some cases, however, your spouse may be unwilling or unable to talk about the future.

This can happen for a number of reasons, including incapacity, fear of becoming dependent, resentment toward you for interfering, or reluctance to burden you with their problems.

Whether your spouse wants to talk about the situation or not, the bottom line is that you need to have a plan. Start with a list of topics that you need to discuss. That way, you'll be less likely to forget anything.

Here are some things that you may need to talk about:

  • Long-term care insurance: Do you have it? If not, should you buy it?
  • Living arrangements: Can your spouse still live with you, or is it time to explore other options?
  • Medical care decisions: What are his or her wishes, and who will carry them out?
  • Financial planning: How can you protect your assets?
  • Estate planning: Do you have all of the necessary documents (e.g., wills, trusts)?
  • Expectations: What expectations do you and your spouse have?

© 2003, Forefield, Inc

Here are suggestions from AARP:

Plan the conversation. It's always helpful to plan a sticky conversation. One of these ways to break the ice might work for you and your family.

Approach the subject indirectly:

  • "I know you're taking lots of pills. How do you keep track of them? Would a pill organizer from the drug store help you?"
  • "John says his dad has given up driving. How would you get around when you can no longer drive?"

Be direct, but non-confrontational:

  • "I'm worried that you seem to be unsteady on your feet. I'm wondering how I can help protect you from falls."
  • "If you ever get to the point where you can't live at home, where would you want to live?

Watch for openings:

  • "You mentioned having problems with your eyesight. Have you seen the eye doctor lately? Does it seem to affect your driving?"
  • "After you said last week that you had trouble turning the handles on the water faucets, I wondered how you were managing with the shower." 

Share your own feelings about your changing life:

  • "You've always been so independent. I imagine it's now hard for you to ask for help. Is it?" Let your spouse know he or she can always ask you for help when they need it.
  • "It's hard to see you give up reading now that your eyesight is getting bad. Do you miss it? Would you like to try a book on tape?"

Make a list. Family members are sometimes uncomfortable jumping right into a talk about sensitive topics, such as finances,

If so, consider writing a list of questions or concerns and provide some time to think about the kinds of help he or she may need and prepare for the conversation.

Dealing with resistance. Some resistance to talking about independence is normal. Your spouse may put you off with reassuring statements. But experts advise:

  • Respect your spouse’s feelings if he or she wants to avoid a subject. Try another time.
  • Push the issue if health or safety is at risk, while recognizing your spouse’s right to be in charge of his or her own life.
  • Act firmly, but with compassion, “We can't ignore this any longer. We have to deal with it."
  • Involve other people who your spouse respects, such as a minister, lawyer, or a family friend.
  • Hold a family meeting where everyone discusses concerns and jointly develops a mutually agreeable plan. Make sure your spouse feels a sense of involvement and control over his or her life. Listen to opinions and recognize the right to make decisions. Stay focused on current needs and avoid past resentments.
  • Look for community resources that can help a your spouse remain independent, such as transportation, home health care, meal delivery. Share the options with him or her.

Focus on key points. Guessing your spouse’s wishes for the future can lead to bad mistakes and hard feelings. Ask about his or her own thoughts about needs and concerns, worries about the future, and hopes and goals.

While you don't want to ask all these questions in one conversation, focus your talks on these major areas.

Where to live: Is your home still ok for your needs? Can you still manage the stairs? Would making some simple home modification help? Should you think about living somewhere else?

Everyday activities: Do you need help with running the house and doing chores? Yard work? Can you hear a knock at the door or the phone ring?

Getting around: Can you get to your doctor visits? Is driving getting hard? Are you getting out to see friends? Getting to the store ok? Can you get to religious services?

Health: What health problems do you have? Are your prescriptions current? Are you having trouble paying for your medicine? Do you need help remembering when to take your pills?

Paying for health care: What kind of health insurance do you have? Has it paid your bills so far? Do you have long-term care insurance? Would you like some help filling out insurance claim forms? Do you have questions about Medicare?

© 1995–2007, AARP

Here are some guidelines to help you communicate with your spouse:

Get attention. Begin your statements and questions with an identifier. This doesn’t necessarily have to be your spouse’s name, but should be a common greeting used between the two of you (very often, a term of endearment will work).

Wait till you have her attention before continuing, especially if there is a great deal of background noise. Very often, it is difficult for impaired individuals to understand when people are talking around them, or to them.

Speak at eye level and enunciate. In addition to getting your spouse’s attention, you also need to retain that attention. Before beginning a conversation, get to his or her eye level. If someone is in a wheelchair or lying down, pull up a chair.

Be sure to retain eye contact and try not to occupy yourself with other things while you’re engaged in conversation. Enunciate your words so that each is differentiated from the other.

Use simple, direct statements. When communicating, you may need to use statements that are short and descriptive. If, “I would appreciate it if you finished your breakfast and got ready because we’re running late,” does not work, try, “Please finish up so we can leave on time.”

The latter may sound curt, but it needn’t take an angry or frustrated tone. It is simply a direct way of communicating your needs.

Ask. Try not to tell. Keep in mind that you are still communicating with an adult. And most adults like to be asked to do something, rather than told what to do. As such, utilize the three magic words: “can,” “will” and “please.” “Can you stand up so I can fix your dress?” “Will you sit in this chair?” “Please join me in the living room.”

Move closer. If you are talking to a loved one and they can’t hear what you’re saying, try moving closer to the person rather than raising your voice.

Be respectful of a person’s “personal space” (or distance at which she/he likes to communicate). But remember the ultimate goal: making yourself understood.

Listen. A simple point, but one not to be overlooked. You know your loved one better than anyone else; use this to your advantage. As a caregiver, very often your most important role is as a listener.

And listening can be done even if your loved one does not speak; you can communicate your interest with as little as holding their hand.

Give yourself plenty of time. Time, and the freedom to take your time, is a necessity. For example, if your spouse needs the time, allow an extra 15 minutes for travel, enough to assist him or her in getting to, from, into and out of the car.

This is especially important if your spouse is particularly resistive or hesitant to participate in her or his own care (taking a shower, for example). Try not to get into a power struggle and maintain your other communication skills.

Try, try again. A little trite, but important nonetheless. If you find yourself in a struggle with your spouse, it is okay to let go. Come back later. Your spouse might need to think about what you are suggesting and the reasons for them.

Prepare a Personal Data Record
 

Are your spouse’s records in order? Find out before a crisis hits.

Get your spouse’s documents in order before a problem occurs. It’s a great opportunity to discuss what the future may hold.

A personal data record is a document that lists information that you might need for your spouse’s care. Here's some information that should be included:

  • Financial information: Bank accounts, investment accounts, real estate holdings.
  • Legal information: Wills, durable power of attorneys, health-care directives.
  • Funeral and burial plans: Prepayment information, final wishes.
  • Medical information: Health-care providers, medication, medical history.
  • Insurance information: Policy numbers, company names.
  • Advisor information: Names and phone numbers of any professional service providers.
  • Location of other important records: Keys to safe-deposit boxes, real estate deeds.

Be sure to write down the location of documents and any relevant account numbers. It's a good idea to make copies of all of the documents you've gathered and keep them in a safe place, because you'll want the information readily available in the event of an emergency.

2003 Forefield, Inc.

Decide about Living Arrangements
 

Where should your spouse live? You have a lot of options to consider.

You will want to keep your spouse home with you as long as possible. Unfortunately, there may come a time when this is no longer possible. Get ready for some tough decisions.

Modify your home

Are you able to take care of your home by yourself? If your answer is no, that doesn't necessarily mean it's time for your spouse to move.

Maybe a family member can help you with chores and shopping. Or perhaps you can hire someone to clean your house, mow your lawn, and help you with personal care.

To evaluate whether your spouse can continue living at home or if it's time to move, consider the following questions:

  • How willing are you to let someone else help you?
  • Can you afford to hire someone to help you, or will you need the help of a friend, relative, or volunteer?
  • How far do you live from family and/or friends?
  • How close do you live to public transportation?
  • How easily can you renovate your home to address your physical needs?
  • How easily do you adjust to change?
  • How easily do you make friends?

Determine assisted-living options

Assisted-living facilities typically offer rental rooms or apartments, housekeeping services, meals, social activities, and transportation. The primary focus of an assisted-living facility is social, not medical, but some facilities do provide limited medical care.

Assisted-living facilities can be state-licensed or unlicensed, and they primarily serve senior citizens who need more help than those who live in independent living communities.

Before entering an assisted-living facility, you should carefully read the contract and tour the facility. Some facilities are large, caring for over a thousand people. Others are small, caring for fewer than five people. Consider whether the facility meets your needs.

Reading the fine print on the contract may save you a lot of time and money later if any conflict over services or care arises. If you find the terms of the contract confusing, ask a family member for help or consult an attorney. Check the financial strength of the company, especially if you're making a long-term commitment.

As for the cost, a wide range of care is available at a wide range of prices. For example, continuing care retirement communities are significantly more expensive than other assisted-living options and usually require an entrance fee above $50,000, in addition to a monthly rental fee.

Keep in mind that Medicare probably will not cover your expenses at these facilities, unless those expenses are health-care related and the facility is licensed to provide medical care.

Evaluate nursing homes

Nursing homes are licensed facilities that offer 24-hour access to medical care. They provide care at three levels: skilled nursing care, intermediate care, and custodial care. Individuals in nursing homes generally cannot live by themselves or without a great deal of assistance.

It is important to note that privacy in a nursing home may be very limited. Although private rooms may be available, rooms more commonly are shared. Depending on the facility selected, a nursing home may be similar to a hospital environment or may have a more residential feel.

Some on-site services may include physical therapy, occupational therapy, orthopedic rehabilitation, speech therapy, dialysis treatment, or respiratory therapy.

When you choose a nursing home, pay close attention to the quality of the facility. Visit several facilities in your area, and talk to your family about your needs and wishes regarding nursing home care. In addition, remember that most people don't remain in a nursing home indefinitely.

2003 Forefield, Inc.

Stay at Home
 

There’s no place like home. Here’s how to keep your spouse there.

Sometimes ill or disabled spouses have trouble with the activities of daily living. When your spouse can no longer shop, do chores around the house, cook, or do personal grooming, it’s time to get help.

Think about the help your spouse might need in the near future. Start by talking to your spouse’s doctor about how health problems may be making it hard to live at home.

Help getting dressed, making meals, or taking medicine may be all it takes to keep your spouse at home. Other times, modifying your home will help.

Types of help available

A wide range of support services are available. Check with you local Area Agency on Aging, local and State offices on aging or social services, tribal organization, or nearby senior centers for more information.

Personal care. Is bathing, washing hair, or dressing getting harder for your spouse to do? Maybe a relative or friend can provide assistance. Or, you might bringing in a trained caregiver for several hours a day.

Homemaking. Need help with housecleaning, yard chores, shopping for food, or laundry? Some grocery stores and drug stores will take phone orders and deliver. There are many housekeeping services available, as well. Some will even help with laundry. Some drycleaners will pick up and deliver.

Meals. Tired of cooking every day? Share cooking with a friend a few times a week or have a potluck dinner with a group of friends. Bring your spouse to lunch at a nearby senior center, church, or synagogue. This will ease both your and your spouse’s social isolation. Hard to get out? Ask someone to bring a healthy meal on occasion. Meals on Wheels can also help.

Money management. Are you and your spouse paying bills late or forgetting to? Getting confused with doctor’s bills and claim forms? Ask a trusted relative to help. Or ask a local agency to provide a volunteer. Also talk with your bank about setting up an automatic bill payment plan.

Health care. Does your spouse forget to take his or her medicine? Devices are available to provide a memory boost. Have you just gotten out of the hospital and still need nursing care at home for a short time? Medicare might pay for a home health aide.

Products to make life easier. Getting harder for your spouse to open doors, get up from chairs, or get dressed? Many products exist to make life easier. Visit www.abledata.com (at the U.S. Department of Education) or call 1-800-227-0216.

Getting around—at home and in town.Spouse having difficulty walking? Consider an electric chair or scooter (often covered through Medicare). Don’t drive any more? Use free or lower-priced public transportation and taxis. Or get a friend or relative to drive.

Activities and friends. Bored with the same old routine? Go to your local senior center and meet old friends or make new ones. Or check with local agencies for available home visitation volunteers.

Safety. Worried about crime, physical abuse, or financial scams? Talk to your local police or area agency on aging. Consider getting an emergency alert system for you and your spouse.

Housing. A ramp on your front steps, grab bars in the bathroom, nonskid rugs and floors, better handles on doors or faucets, and better insulation. All these items can make a big difference. Check the internet for details or contact your local aging agency.

Arrange for Adult Daycare or Home Healthcare
 

If you care for your spouse and work full time, you may be overwhelmed. How about some help?

If you have work, children, and other responsibilities, taking care of your spouse may take more time than you have. Get the help you need.

Adult Day Care Services

Adult day center programs have been assisting caregivers for over 20 years. According to the National Adult Day Services Association (NADSA), there are more than 3,500 centers nationwide servicing more than 150,000 Americans each day.

An adult day center: provides older adults with social and some health services, so they can remain independent, and affords caregivers respite from the often-demanding responsibilities of caregiving.

There are three main types of adult day centers.

  • Adult Day Social Care, which provides social activities, meals, recreation and some health related services.
  • Adult Day Health Services, which provides social activities as well as more intensive health, therapeutic and social services for those with severe medical problems or for those at risk of nursing home placement.
  • Dementia-Specific Adult Day Care, which provides social and health services only to those with diagnosed dementias.

Although each facility may differ in features, scope of services and the area of expertise, there are some general services are offered by most centers.

These usually include transportation in handicapped accessible vehicles, planned social activity, meals and snacks, nursing care, personal care, counseling for depression and separation anxiety, therapeutic activities, and rehabilitation therapy. 1

Home Health Care

Home care is care that allows a person with special needs to stay in their home. It might be for people who are getting older, are chronically ill, recovering from surgery or disabled.

Home care services include

  • Personal care, such as help with bathing, washing your hair or getting dressed
  • Homemaking, such as cleaning, yard work and laundry
  • Cooking or delivering meals
  • Health care, such as having a home health aide come to your home

You can get almost any type of help you want in your home. Some types of care and community services are free or donated. Many other types you have to pay for. Sometimes government programs or your health insurance will help cover the cost of certain home care services.

There are two broad categories of home care available for seniors:

  • Companion Care: This term is used to describe a broad range of non-medical services. Care plans are tailored to the needs of the individual both in terms of hours of coverage and actual services.

    Coverage times can range from a few hours per day, one or more days per week, all the way to round-the-clock live-in support. Available services typically include companionship, meal planning and preparation, transportation, light housekeeping, medication reminders, errands, bill paying, and personal care such as assistance with bathing and grooming.

    Companion care can be used by itself or in conjunction with home care provided by a family member.
  • Home Healthcare: This care is provided by healthcare professionals, such as nurses, physical and occupational therapists, medical social workers, dieticians, technicians and medication managers.

    Services range from vital signs checks, blood draws and physical therapy to specialty offerings such as home dialysis. Healthcare services are typically ordered and supervised by a physician.

    There is usually very little overlap in the services of companion care and home healthcare providers.

As general guidelines for selecting professional home care services providers, the National Association for Home Care offers these questions for analyzing home health care providers:

  • How long has this provider been serving the community?
  • Does this provider supply literature explaining its services, eligibility requirements, fees, and funding sources?
  • Many providers furnish patients with a detailed “Patient Bill of Rights” that outlines the rights and responsibilities of the providers, patients, and caregivers alike?
  • An annual report and other educational materials also can provide helpful information about the provider.
  • How does this provider select and train its employees? Does it protect its workers with written personnel policies, benefits packages, and malpractice insurance?
  • Are nurses or therapists required to evaluate the patient's home care needs? If so, what does this entail? Do they consult the patient's physicians and family members?
  • Does this provider include the patient and his or her family members in developing the plan of care? Are they involved in making care plan changes?
  • Is the patient's course of treatment documented, detailing the specific tasks to be carried out by each professional caregiver?
  • Does the patient and his or her family receive a copy of this plan, and do the caregivers update it as changes occur? Does this provider take time to educate family members on the care being administered to the patient?
  • Does this provider assign supervisors to oversee the quality of care patients are receiving in their homes? If so, how often do these individuals make visits? Who can the patient and his or her family members call with questions or complaints? How does the agency follow up on and resolve problems?
  • What are the financial procedures of this provider? Does the provider furnish written statements explaining all of the costs and payment plan options associated with home care?
  • What procedures does this provider have in place to handle emergencies? Are its caregivers available 24 hours a day, seven days a week?
  • How does this provider ensure patient confidentiality?
  • In addition, ask the home care provider to supply you with a list of references, such as doctors, discharge planners, patients or their family members, and community leaders who are familiar with the provider's quality of service.

Contact each reference and ask:

  • Do you frequently refer clients to this provider?
  • Do you have a contractual relationship with this provider? If so, do you require the provider to meet special standards for quality care?
  • What sort of feedback have you gotten from patients receiving care from this provider, either on an informal basis or through a formal satisfaction survey?
  • Do you know of any clients this provider has treated whose cases are similar to mine or my loved one's? If so, can you put me in touch with these individuals?2

1 "The 2009 MetLife Market Survey of Nursing Homes, Assisted Living, Adult Day Services, and Home Care Costs", Oct. 2009
2 "How Do I Select the Right Home Care Provider?", National Association for Home Care & Hospice, Viewed 8/3/2010 from www.nahc.org/consumer/selection.html

Get Support
 

Being a caregiver is stressful. Don’t carry the burden alone.

There’s a danger that caring for your spouse can tilt your life out of balance. Don’t neglect your children, personal life, or finances. Get help now.

Although caring for your spouse falls primarily in your hands, you don't have to do it all alone. Many local and national caregiver support groups and community services are available to help you cope with caring for your aging or disabled spouse.

If you don't know where to find help, contact your state's department of eldercare services. Or, call (800) 677-1116 to reach the Eldercare Locator, an information and referral service sponsored by the federal government that can direct you to resources available nationally or in your area.

Some of the services available in your community may include:

  • Caregiver support groups and training
  • Adult day care
  • Respite care
  • Guidelines on how to choose a nursing home
  • Free or low-cost legal advice

Once you've gathered all of the necessary information, you may find some gaps. Perhaps your spouse doesn't have a health-care directive, or your will is outdated. You may wish to consult an attorney or other financial professional whose advice both you and your spouse can trust.

© 2005 Forefield, Inc.

Take Care of Yourself
 

You can’t care for your spouse if you get sick yourself. Stay well.

Caring for someone can sometimes be overwhelming. As you well know, it can be physically demanding, emotionally draining, and cause stress and conflict when combined with other responsibilities.

So don’t neglect your own physical and mental health.

Sometimes we are so deeply concerned about the well-being of the person for whom we are caring, that we forget our own needs.

We “burn the candle at both ends” and become exhausted, emotionally stressed or ill, compromising our own quality of life and our ability to care for our family member.

Some Caregiver Do’s and Don’ts

We owe it to ourselves and to our families to also maintain our own physical and emotional health by:

  1. Getting sufficient sleep
  2. Eating a healthy diet
  3. Exercising and staying physically fit
  4. Choosing appropriate health care professionals and having periodic health checkups
  5. Not abusing alcohol and drugs
  6. Spending social time with family and friends
  7. Pursuing our own interests
  8. Seeking support from family, friends, professionals, or your religious advisor or joining peer support groups
  9. Using appropriate in-home and community-based services

Keep in mind that it is normal to feel angry, frustrated, or depressed from time to time. Caregiving can be a difficult as well as a rewarding undertaking. If you are feeling stressed, angry, or depressed:

  • Remove yourself from the situation by walking away, even if it’s just around the house
  • Talk to someone with whom you feel close
  • Call a hot line
  • Talk with your doctor or other health professional
  • Write down your feelings in a journal

If you find that you frequently are angry or depressed or that your emotions are getting out of control, you may benefit from counseling, and/or get relief in the form of respite, caregiver support groups, and supportive in-home services.

U.S. Department of Health and Human Sevices

Make Assisted Living Arrangements
 

The goal of assisted living is to allow your spouse or loved one to stay independent in a home-like setting

A quality assisted living facility can have a tremendous positive impact on your spouse’s mental, physical, and social well-being. But you need to find the right one.

Visit the Moving Into an Assisted Living Facility checklist, located in the Resource Center, for assistance.