Understanding the Problem
Many older people experience problems in daily living because of chronic illnesses or health-related disabilities. Those difficulties restrict their ability to perform self-care. This inability for self-care is a common reason why older people seek help from outsiders, move to assisted living communities, or enter nursing homes.
The daily living skills most affected by aging and chronic illnesses or disabilities include self-care activities that most people learn in early childhood and tend to take for granted as they mature. These include basic survival tasks such as dressing, bathing, grooming, using the toilet, moving in and out of bed or a chair, and eating. They also include activities for maintaining an independent life such as cooking, cleaning, doing the laundry, shopping, handling money, writing checks, driving, using public transportation, and using the telephone.
Health professionals have coined two terms to cover these activities. You may hear these terms used in discussions of your problems:
- Activities of Daily Living (ADL)
These include the basic tasks of dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed
- Instrumental Activities of Daily Living (IADL)
These refer to activities for maintaining a household and an independent life such as cooking, cleaning, laundry, sewing, and similar tasks.
Impact of health problems
Problems in doing daily living tasks arise for many reasons and are closely linked to other health problems. For example, people with congestive heart failure or pulmonary (lung) disease may lack the physical endurance or stamina to manage household tasks like cleaning, cooking, and laundry on their own. People with arthritis may be unable to perform the small, precise movements of the hands and arms needed for daily tasks. Failing eyesight and hearing can also make self-care more difficult. Inability to take medicines correctly may be related to problems such as being unable to read instructions, open bottles, get a glass of water, not having the finger dexterity to handle small pills, and even not remembering to take the medicine in the first place.
Varying degrees of difficulties
These problems are often a matter of degree; for example, an older person may be able to dress himself or herself except for reaching to put on shoes and tie shoelaces, or managing difficult fasteners (especially zippers and snaps that close in the back). If that is the case, self-care abilities can be improved simply by changing the kinds of clothes worn and the way they are fastened.
Eating is another task that may have difficult parts. One person may be able to eat independently except for cutting foods or handling liquids without spilling them. At the other extreme, another person may not be able to bring a spoon to his or her mouth at all, or may even have difficulty swallowing food. Often these problems arise gradually and may not even be considered a problem for some time. For example, the first signs may be fatigue in performing common tasks or an observation that things that used to take just a few minutes are now taking much longer.
In most cases, the older person will be the best judge of his or her own need for help with daily living. If you are worried about the person you are caring for, you should discuss these issues openly and with sensitivity. To understand the problem, it is necessary to understand the person. The exception is when daily living problems arise because of a disease that affects memory, such as Alzheimer's disease or, at times, stroke, Parkinson's disease, and other illnesses. In those cases, difficulties in daily living may be due more to forgetting to perform a task or how to complete it correctly rather than in physically doing the task. If memory is a factor, the help needed usually involves reminders, coaching, and assistance to ensure the person's safety and completion of the activity.
Include the older person when planning for someone to come into the home to help
Issues of self-care and problems in living are highly personal and involve the routines and rituals of daily life that are well established. The older person is likely to have strong preferences for details of how and when help is provided. Older people will feel loss of control when strangers are involved with their intimate daily lives. The best way to avoid an intense sense of helplessness is for the older person to retain as much control as possible. If the older person has not been involved in the plan, he or she is much more likely to refuse the help or to disrupt it.
Of course, if you are caring for someone who has lost the ability to make decisions, you will need to provide more guidance. You might also need to evaluate your own ability to provide the needed help compared to making arrangements for outside help. Regardless of the situation, it is important to involve the older person as much as possible in planning the care. (See Caregiver Guide: Caregiving for more discussion of involving older persons in planning their own care.)
Your goals are to:
- Maintain the older person's ability to function as independently as possible for as long as possible
- Arrange for appropriate care
- Involve the older person in planning the care
- Call for professional help when needed
Click on each of the topics below to read more.
When To Get Professional Help
Call for professional help during office hours to discuss the following
You want to learn better ways to help the older person with daily activities
Your local Area Agency on Aging is an excellent source of ideas and resources for dealing with problems of daily living. If you ask for an assessment, the agency will send a caseworker to your home to assess the older person's needs. The caseworker can make useful suggestions and direct you to professionals who can help. If the older person is receiving services from a home health agency, the home health nurse who visits the home can often make useful suggestions and provide education or other support. A social worker with the home health agency may make a few visits to discuss options and guide you in making the best choices to meet your needs.
You and your family cannot give the kind or amount of help that is needed
Again, your Area Agency on Aging is your best resource for getting outside help. A caseworker will assess your needs and help you decide on the kind and amount of help that you need from outside the home and how to obtain that help. The agency may be able to help with the costs, but this depends upon your financial situation and the kinds of help you need.
Where to get help
Area Agency on Aging staff and caseworkers can help you identify problems and arrange for help
They can also tell you what you are entitled to receive. Their own services are free and, in some circumstances, they can arrange for assistance to pay for services the older person needs. If getting help at home will keep a person from going into a nursing home, there may be funds to help provide home care services. The telephone number of your local Area Agency on Aging is in your phone book, often in the "Human Services" section.
Home health agency
Home health agency staff are referred by a doctor and are available to help for a limited period of time when there is a medical problem that requires professional attention. They will report the patient's health status to the doctor, monitor the use of medicines, teach family members how to use medicines and how to carry out needed medical procedures. They often have social workers and physical therapists on their staff along with home health nurses and aids. When home health agency staff are visiting the home because of physical problems, they often will make suggestions and help organize ways to deal with activities of daily living problems as well.
Hospitals where the older person is treated often have social workers, nurses, physical therapists, and occupational therapists who are knowledgeable about how to deal with problems of daily living and who can also help to arrange for services in the home.
Have the following information available before calling
When you call the Area Agency on Aging, explain the older person's problems with activities of daily living. Be clear and specific. There is often a waiting list of families who need assessments and the more clearly you explain your problem, the greater the chances that you will be seen soon. If they ask you for specific information such as insurance cards or financial data, provide that information as quickly and accurately as possible. This will improve the chances that the process will go smoothly.
What You Can Do To Help
Work with the older person in developing a plan to provide the help that is needed
Activities of daily living are very personal, so it is not surprising that people who need help are sensitive about getting it and about the kind of help they receive. If new ways of doing things, and/or if new assistive equipment are involved, these should be discussed so that the older person can understand the need for them. This also applies to bringing new people into the home. If the older person is resistant to new people, it often helps to suggest starting slowly by arranging for one person to come in for a limited time.
If outside help is needed to take some of the burden off your shoulders, be open with the older person about this. He or she needs to understand that outside help is important to you and for your health.
If the older person resists outside help and his or her health and welfare are at risk, a professional health care worker or your caseworker from the Area Agency on Aging can assist you in dealing with this challenge.
Encourage a positive attitude toward change
Focus on how the new ways of doing things will help the older person remain independent. At the same time, recognize that changes are difficult. Some older persons may become anxious, depressed, or angry. They may need special attention from professional caregivers to cope successfully.
Support the older person's efforts to manage daily activities
Allow him or her to have as much control as possible. This may mean letting the older person take some risks, as long as he or she understands the risks and chooses to take them. Being in control and making choices is important for all of us and this becomes especially important as the choices become limited, as they often do for older people.
Organize help from family and friends
Using other people's help requires organization, such as lists, schedules, reminders, and the like. At first you may think that it is easier to do the things yourself than to go to the trouble of organizing help from others. However, once you have a system in place, it will be less work and there will be the advantage of stimulation from other people for both you and the person you are caring for. The older person should be involved in these plans because it is his or her life that is being affected.
When arranging for help, be clear and explain how much time you need. This allows the helpers to plan their time and to be reassured that there is a limit to their commitment. Include in your plans ways to make helping a positive experience for the helper. This will ensure a continuing supply of help.
Arrange for and supervise paid help
If possible, avoid hiring paid help through advertisements in the newspaper. If you do, be sure to obtain and check references. It is usually best to locate helpers through recommendations of others who know them or through a hospital or home health agency staff. Agency staff will have had experience with the people they recommend. Once someone is hired, that person should be supervised. The older person receiving the care may not be the best person to do this since he or she is dependent on the helper and may overlook or minimize deficiencies in the caregiving. If you are not living in the same household as the older person, then stop by at unscheduled or irregular times. This can give you a better sense of how well the employed helper is carrying out the duties.
Avoid pullover shirts and clothing with zippers in the back
These are hard to put on. Clothing items that demand bending and moving the arms can be difficult for older people who have arthritis or are otherwise weak. Zippers in the back of the clothing are hard to reach and often remain unzipped. Cardigan sweaters, blouses, or shirts with large buttons or front zippers are good choices.
Shop for special clothing in home care catalogs
There are catalogs that specialize in easy-to-wear clothing for people with arthritis or who have had strokes. You can get good, practical ideas from these catalogs on how to modify an older person's clothing. You can also order the special clothing items, such as shirts, dresses, and gowns with Velcro closings. You can ask an occupational or physical therapist, home health nurse, or Area Office on Aging staff which catalogs or websites they recommend.
Use grabbers to reach socks and put them on, over the heel and up the leg
Grabbers are metal poles with clamps on the end. They can be purchased at stores that sell durable medical equipment or from home care catalogs or websites.
Limit full tub baths or showers to once weekly if bathing is difficult
Older people may not need to bathe as frequently as when they were younger. Their skin dries out quickly from extra scrubbing and the task of bathing can be tiring. Perhaps a home attendant or nurse's aide can help with a weekly tub bath or shower. On other days, the older person can sit in a chair or on top of a closed toilet and bathe with warm water from the bathroom sink.
Install grab bars or a bath chair
Grab bars or bath chairs allow older people to bathe more safely.
Avoid baby oil in the tub bath water
This makes the tub slippery and can cause a fall.
Avoid bubble bath liquids, powders, or crystals
Bubble baths contain chemicals that can irritate the skin and may also cause a urinary tract infection.
Consider using large combs, hairbrushes, and toothbrushes
These special items have larger, easy-to-grip handles designed especially for arthritic hands or for people who have limited hand movement. These personal care items are available from special home care catalogs or in stores that sell durable medical equipment. Some drug stores also sell these items.
Shampooing and hair care suggestions
Consider arranging for monthly visits from a hair stylist
Many hairstylists make home visits to trim, shampoo and set hair, and give permanents. Some barbers also offer home services. If you are having trouble finding a hair stylist who will come to the person's home, call your local hospital or nursing home. Their hair stylists usually know who offers this service in the community. In addition, there are some stylists who volunteer their time for home hair care of needy people.
Consider using a shampoo tray to wash hair in bed
If the older person is bedridden,, a plastic shampoo tray can be placed around the neck to catch water, which then drains into a basin. These trays can be purchased at stores that carry home care products. If nurses' aides or attendants are helping at home, they will usually bring a tray with them to do shampoos in bed.
Consider using no-rinse shampoos
Shampoos that do not need to be rinsed cleanse the hair nearly as well as those that are rinsed with water. They do not produce as "clean" a feeling as a good head scrub, but they do remove dirt and oils and are helpful between regular shampoos.
Foot care suggestions
Soak feet every other week or weekly
If the skin on feet is dry and flaky, soaking the feet in warm soapy water in a small tub will soften the skin. Soaking also helps soften nails that are brittle from medicines or from nail fungus, a common foot problem.
Call a foot doctor (podiatrist) about nail or foot fungus and hard-to-cut toenails
Many foot doctors (podiatrists) specialize in geriatric foot care and are willing to make house calls. Their service, however, is not usually covered by insurance unless the foot problems have been caused by medical conditions such as diabetes. The service is usually costly, but some foot doctors offer a sliding scale of fees based on the older person's income. Podiatrists can visit the home, treat feet, prescribe lotions or medicines that may be needed, and give advice on foot care.
Consider raising the toilet seat
Three or four inch-deep toilet seat tops fit over the regular toilet seat and make it easier for the older person to get on and off the toilet.
Consider grab bars by the toilet
Some elevated toilet seats come with side rails. Other times people install a bar or rail beside the toilet that the older adult can use to safely sit down and get back up. Handlebars can also be purchased for each side of the toilet. These help steady the older person and assist them in pushing off the raised seat. Steps such as these not only encourage independence, but also safeguard against falling.
Consider replacing the toilet with one made for the disabled
These are higher than standard toilet and much easier for the older person to use.
Consider placing a portable commode by the bedside or chair for quick access
Plastic commodes can be rented or purchased at home care product stores. They have handlebars for gripping and pots for emptying. They are especially useful at night when the older person does not want to wake others or if he or she is living alone. These commodes can be easily emptied and cleaned. They are lightweight and are easily moved if privacy is needed.
Consider using remote control or motion-sensitive lights
Lamps and overhead lights can be adapted to turn on and off by pressing buttons on a remote control. These devices can be purchased at local electronic stores and some department stores. They are very useful in helping an older person retain independence. For example, older people can use them to turn lights on in the middle of the night when they need to go to the bathroom or to take medicine. For older adults with memory problems, try night lights and motion sensitive night lights.
Moving in and out of bed suggestions
Encourage the older person to sit and dangle legs before standing
Dangling legs for a few minutes allows for the body and blood pressure to adjust to a change in position. Getting up too fast causes dizziness that can lead to falls.
Use large utensils if hands are weak
Special plastic forks, knives, and spoons are available with large, specially wrapped handles designed to provide a firm grip.
Consider serving small meal portions
Smaller portions can be finished more easily and are more appealing to adults with little appetite. A selection of finger foods is tasty and easy to eat.
Make snacks available between meals
Many snacks can be wrapped and placed next to the older person to avoid a trip to the refrigerator or kitchen. A good example is a "power bar" that is nutritious and tastes like candy or cookies. In the grocery store these items are usually found near the cereal. Fruit is another good snack idea.
Encourage the older person to join you in shopping
Shopping can be a good way to get more stimulation, exercise and to select personal items for purchase. The length of the trip should be adjusted to the older person's capabilities. If the older adult cannot go to the store, have them go through the store advertisement in the newspaper or online with their caregiver to select foods.
Consider getting help for shopping
If you need help shopping, contact local volunteer or church groups or ask the Area Office on Aging for assistance in arranging for help. You can also order food online from supermarkets that deliver.
Preparing food suggestions
Consider preparing meals in advance and freezing them
The frozen meals can be put in the older person's freezer and later heated in a microwave or oven. Be sure to print instructions for re-heating in large, bold print if the person's eyesight is not good.
Consider using Meals-on-Wheels
If preparing food is a problem for the older person and you cannot do it, consider applying for a "meals-on-wheels" service which delivers a hot meal at noon along with a cold supper to put in the refrigerator. Meals-on-Wheels may be available through your Area Agency on Aging and volunteers make deliveries five days a week. Fees are on a sliding scale based on the older person's income.
In many areas there are also companies that deliver meals for a price. Orders can be placed online by anyone, even if they don’t live near the older adult.
Carrying Out and Adjusting Your Plan
Problems you might have carrying out your plan
Focus on the day-to-day activities the older person can still do, rather than on what the person can no longer do. You are helping the older person to stay active and independent. This is one of the most important and effective ways to give that person the best possible quality of life.
The person receiving help is so dependent on the helper that he or she may be reluctant to say anything bad. Therefore, you will have to be a more objective voice. By visiting the home while the paid helper is there-at unscheduled times-you should be able to tell the quality level of care. If necessary, you will have to talk directly to the helper about the deficiencies and/or contact the helper's supervisor.
If the paid person is from an agency, there is no problem since the agency will send a replacement. This is one of the advantages of using an agency to obtain help. If you hired the person directly, then you will want to have backup people that you can call to fill in. It is best to have at least two people whom you can call as back-ups.
The best way to deal with this is to get the family involved in arranging and supervising the help. This will help to make them more realistic. If this is not feasible, have them visit and spend a significant amount of time in the home with your mother and the people who are helping her. This may show them what can reasonably be expected of paid help. Also, it is good to have outsiders with high standards who can give you support in improving the care that is given.
Suggest a short trial period for a kind of help that is least objectionable to him. That way he can experience the help rather than imagining it. It also gives him control because he will decide if he wants the help to continue. You can also tell him directly how much it means to you for him to have this help. If he sees getting help for himself as also helping you, he may be more willing to accept it. If, after trying to persuade him, he still refuses help, then you may have to accept his decision. As long as he is thinking clearly and understands the consequences of his decision, it is his right to make decisions about his life.
Think of other problems you might have carrying out your plan
What other problems could get in the way of doing the things suggested in this section? For example, will the older person cooperate? Will other people help? How will you explain your needs to other people? Do you have the time and energy to carry out this plan?
Checking on Progress
Your goal is to maintain the older person’s ability to live independently and function as well as possible for as long as possible. Don’t expect a return to what they were like before the problems started. Progress will be slow. The older person may always need help, so the goal may simply be for them not to need additional help. Set reasonable goals for yourself and for the older person.
Realize there will be ups and downs, good days and bad days. That doesn’t necessarily mean the plan isn’t working. If daily living problems become worse, make new plans with help from professionals.
What to do if your plan isn't working
Sometimes when the older person is mildly resisting, they might need a little more time to accept and adjust to the changing situation. Education, information, and support from health care providers, family, and friends can be helpful. If the older person is in physical danger and enough help cannot be provided, outside professional help may be necessary to ensure the person’s safety and your peace of mind.
The older person’s healthcare provider may need to be consulted, since resistance to receiving care could be linked to a mental or physical condition that can be successfully treated. Counseling by a psychiatric nurse, social worker, or therapist experienced with these issues can help older persons deal with losses, dependency issues, and other challenges of aging.
Sometimes it can help to point out that help will keep the person at home. Otherwise, they will have to move into a care facility. It can also help to offer the older adult the choice between those and other options. Your family doctor or other healthcare provider, local mental health agency, or Area Agency on Aging can direct you to appropriate services in your community.