Sections in this chapter:

Understanding the Problem
When To Get Professional Help
What You Can Do To Help
Possible Obstacles
Carrying Out And Adjusting Your Plan

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 master 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, writing checks, driving, using public transportation, and using the telephone. Health professionals have coined two terms to cover these activities: ADL and IADL. You may hear these terms used in discussions of your problems. ADL stands for "activities of daily living," the basic tasks of dressing, bathing, grooming, using the toilet, eating, walking or getting in and out of bed. IADL stands for "instrumental activities of daily activities," referring to activities for maintaining a household and an independent life such as cooking, cleaning, laundry, sewing, and similar tasks.

Problems in doing daily living tasks arise for many reasons and are closely linked to health problems discussed in other chapters. 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 lack the dexterity to perform small motor tasks required for daily tasks. Failing eyesight and hearing can also reduce the capability for self- Care. Inability to take medicines correctly may be related to problems such as being able to read instructions, open bottles, get a glass of water, having the finger dexterity to handle small pills, and even remembering to take the medicine in the first place.

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 and tie shoes or managing difficult fasteners (especially zippers and snaps that close in the back). If that is the case, self- Care abilities can be increased simply by changing the kinds of clothes worn and the way they are fastened. 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 the 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 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.

Do not bring in help without discussing it with the older person. 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 a debilitating 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 sabotage its effectiveness. Of course, if you are caring for someone who has lost the ability to make decisions, you will need to provide more guidance. You may 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 older people as much as possible in planning their care. (See the chapter on "Caregiving" for more discussion of involving older persons in planning their care.)

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When to Get Professional Help

Call for professional help if:

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 or recommend an organization that can send a professional to yoiur home to assess the older person's needs. This person may make useful suggestions and can also 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. There are also private care managers who can do an in-home assessment, coordinate services and monitor them on an on-going basis. This can be especially helpful if there are no family members in the immediate area to monitor services.
You and your family cannot give the kind or amount of help that is needed. Your Area Office on Aging is your best resource for getting outside help. They either send a caseworker or can give you information to find a caseworker who 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 to arrange for help. They can also tell you what you are entitled to receive. Their 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.

Home health agency staff are referred by a physician and are available to help for a limited period of time when there is a medical problem that requires professional attention. These services are covered by Medicare for a limited period. After that you can pay for them privately if you wish. They will report the patient's health status to the physician, 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 staffs 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. Ask your physician to introduce you to one of these professionals if you haven't met them previously.

Information you should have available when you call

It is usually enough to be able to explain the problems you are having to the professional who visits the home. They have standard forms to fill out and questions to ask that will give a clear picture of your situation and needs.

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 you are asked to provide specific information such as insurance cards or financial data, your providing them as quickly and accurately as possible will improve the chances that the process will go smoothly.

Example of what you might say when calling for help

"This is Rose Varian. My father, Samuel Pavan, who is 85 years old and lives in our house, has been having more and more problems getting upstairs. He has been sleeping in the living room on the first floor, but it is very hard for him to get up the stairs to the bathroom which is on the second floor especially at night."

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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 help and about the kind of help they receive. If new ways of doing things or if new assistive equipment is involved, these should be discussed so that the older person can understand the need for them. The same 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 should realize 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. Often a trusted family member or friend can help the older person accept changes as well.
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. To use other people's help requires organization lists, schedules, reminders, etc. 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. On the other hand, 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 committed. 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. (See the chapter on "Caregiving" for more discussion of how to plan and encourage help from family and friends.)
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 consequential deficiencies in the care-giving. 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.
Help the older person to carry out activities of daily living. Helping with daily activities will challenge your creativity. The following suggestions have helped other people with this problem. Some may be helpful to you.

Dressing suggestions

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 arthritic or otherwise weak older people. 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.
Use front Velcro closings on pajamas and nightwear. These are easier to open and close because the two strips of Velcro adhere to each other when pressed together and they pull apart easily when separated. (Be sure to attach the Velcro strips together when laundering the clothing or the Velcro will stick to other items.)
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 or you can purchase the special clothing items, such as shirts, dresses, and gowns with Velcro closings, by ordering them from these catalogs. Ask an occupational therapist, physical therapist or home health nurse or Area Office on Aging staff how to obtain these catalogs.
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 in home care catalogs or at stores that sell durable medical equipment. Sometimes organizations such as the American Cancer Society, the Arthritis Foundation, or Lions Club will loan them from their supplies. If you cannot locate these, call the Physical or Occupational Therapy Department at your local hospital and ask for help.

Bathing suggestions

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. (See the "Mobility" chapter ideas for how to keep the bathroom safe.)
Use small washcloths on the face. Small washcloths are easy to handle and do just as good a job as big ones. They are particularly helpful when washing the face and can fit in hard-to-get areas, such as the nose or ears. They can be purchased in the infant section of a department store.
Avoid baby oil in the tub bath water. This is slippery and can cause a fall.
Avoid bubble bath liquids, powders, or crystals. Bubble baths contain chemicals that can irritate the skin and can also cause a urinary tract infection.

Grooming suggestions

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.

Caring for feet 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 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 advise on foot care. Often, older people welcome a monthly visit from a podiatrist.

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 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 and what the fee is. Fees are sometimes the same as for a salon visit. In addition, there are some stylists who volunteer their time for home care of needy people.
Consider using a shampoo tray to wash hair in bed. If the older person is confined to bed, a plastic shampoo tray can be placed around the neck to catch water and then to drain water into a basin. These trays can be purchased at stores that carry home care products. If nurse's 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" as feeling as a good head scrub, but they do remove dirt and oils and are helpful between regular shampoos.

Toileting suggestions

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. Handle bars can also be purchased for each side of the toilet. These help steady the older person and assist him or her in pushing off the raised seat. Measures such as these not only encourage independence, but also safeguard against falling.
Consider replacing the commode with one made for the handicapped. These are higher than standard commodes and much easier for the older person to use.
Consider placing a commode by the bedside chair for quick access. Plastic commodes can be rented or purchased at home care product stores. They have handle bars 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 for reasons of privacy.

Lighting suggestions

Consider using remote control lighting devices. 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, the older person can use them to turn lights on in the middle of the night when he or she needs to get to the commode or to take medicine.

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 which can lead to falls.

Eating suggestions (See the chapter on "Weight Loss and Nutrition" for more discussion of how to help the older person get the nutrition needed.)

Use large utensils if hands are weak. Special plastic forks, knives, and spoons are available with large, specially wrapped handles designed to assist a firm grip.
Consider serving small meal portions. Smaller portions can be finished more easily and are more appealing to adults with little appetite.
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.

Shopping suggestions

Encourage the older person to join you in shopping. Shopping can be a good way to increase stimulation for the older person and, at the same time, accomplish some important work such as exercise and selecting personal items for purchase. The length of the trip should be adjusted to the older person's capabilities.
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.

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 using "Meals-on-Wheels" which deliver a hot meal at noon along with a cold supper to put in the refrigerator. Meals-on-Wheels are usually 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.

Possible Obstacles

"Helping with daily activities seems endless; I don't see any progress."

Focus on what day-to-day activity is still doable rather than on what the person no longer can do. You are helping the older person to stay active and independent. This is one of the most important and best ways to give that person the best possible quality of life.
"I don't think the paid helper is doing a good job, but my mother is reluctant to criticize."

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 what is really going on. If necessary, you will have to talk directly to the helper about the deficiencies and to contact the helper's supervisor.
"What happens if the paid helper is sick? How do I get help then?"

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 that you can call as back-ups.
"My family is dissatisfied with the paid help we have for my mother. They want perfection and that isn't possible."

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.
"My father has always taken care of himself and he is absolutely against getting outside help but I can't give him the help he needs by myself."

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.

Try to get the support of other family members in reinforcing the need for help. If your father has significant memory loss or is at real risk of endangering himself, you may have to insist on having help, at least on a trial basis. One obstacle may be money. Older people, even if they have funds, are sometimes reluctant to spend them. Offering these services as a gift may smooth the path toward acceptance. Another option to discuss is trying adult day care where he can socialize, have a noon meal and do exercise and other activities. Finally, moving to an assisted living facility may be a way for him to maintain independence safely. Visiting a few of these facilities while you are using in-home health will allow your father to compare the advantages of living at home to being in an assisted living situation.

Think of other obstacles that could interfere with carrying out your plan

What additional roadblocks could get in the way of doing the things suggested in this chapter? For example, will the 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 the plan?

You need to develop plans for getting around these roadblocks. Use the six problem-solving steps in the chapter on "Using the Eldercare at Home book to solve caregiving problems."

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Carrying Out and Adjusting Your Plan

Your goal is to maintain the older person's ability to function independently as much as possible and for as long as possible. Don't expect a return to what he or she was like before the problems started. Progress will be slow. Set reasonable goals for yourself and for the person for whom you are caring.

If daily living problems become worse, make new plans with help from professionals. If you think that moving to a nursing home or assisted living may be necessary, read the chapter on "Choosing a Nursing Home" in this book.

Sometimes when the older person is mildly resisting, he or she may need a little more time to accept and adjust to the changing situation. Education, information, and support from health care professionals, family, and friends can be helpful. If the older person is in physical danger and enough help can not be provided, outside professional help may be necessary to ensure the person's safety and your peace of mind. The older person's medical doctor 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 issues of the elderly can help older persons deal with losses, dependency issues, and other challenges of aging. Often the counselor can come to the home. Ministers, priests, rabbis and other clergy can be very helpful in dealing with grief and loss as well and may be more acceptable to some older persons. Your family doctor, local mental health agency, or Area Agency on Aging can direct you to appropriate health/behavioral health services in your community.

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