Caring for an Aging Family Member
As research has given us advances in health care, people in most parts of the world are living longer than ever. Although most people value long life, difficult challenges await older men and women who develop disabling conditions and those who care for them.
In the United States, family members do about 80% of the caregiving for older people. As the large Baby Boom generation ages, more people than ever will find themselves caring for aging parents or other family members.
This article addresses several key aspects of caregiving, including adopting a positive view of aging, knowing when it’s time to step in, understanding how age-related diseases are diagnosed, and getting educated.
Rejecting Negative Stereotypes and Embracing a Positive View of Aging
Western culture today puts a premium on youth. The elderly, once respected and honored, are increasingly negatively stereotyped with ideas such as “old geezers,” “set in their ways,” and “senile.” Those who care for aging loved ones should reject these dehumanizing stereotypes and embrace the idea that the elderly have inherent value as human beings and can offer us precious gifts.
In Japanese and Chinese cultures, older people receive great respect and admiration. Wrinkling skin and hair turning gray or white are signs of hard work, wisdom, and knowledge. In these cultures “life may truly be said to begin at sixty.” Family members see taking care of elderly parents as both an honor and an obligation.
The Challenges of Growing Older
As people age, many medical conditions are more likely to develop that make it difficult for a person to care for himself or herself. Some of the more common conditions include:
- Heart disease
- Parkinson disease
Dementia is one of the most common illnesses in the elderly. There are many kinds of dementia, including Alzheimer’s disease, and all of them can cause your loved one to be unsafe. As judgment and memory begin to fail, people often become a danger to themselves and others.
Family Involvement: When to Step In
Children and other family members often wait too long before they speak to a parent about problems they’re observing. Generally, earlier intervention is better. Some illnesses that are common in the elderly respond well to medication, and starting medication earlier rather than later can prevent suffering.
It’s important, therefore, to watch for symptoms of possible illness in your aging parents. Symptoms include difficulty with tasks such as driving, moving from one room to another, preparing meals, eating, and keeping up with personal hygiene. If you observe these or other difficulties, it’s important to help your parent make an appointment to visit a doctor for an assessment.
Assessment and Diagnosis
According to the website of the American Association for Retired Persons (AARP), an assessment should include “a full review of a person’s mental, physical, environmental and financial condition to determine his or her ability to remain safely independent. It identifies risks and helps determine options to reduce them.”
Getting an accurate assessment begins with the doctor asking for a detailed history, including education, employment, and past illnesses. If the loved one’s memory is failing, it’s a good idea for a family member to go along so he or she can help answer questions about how the patient has changed over time, the symptoms observed, and the order in which the symptoms developed.
After the history is taken, your loved one will receive a physical exam and a brief mental status exam, which includes things such as ability to learn, recall, pay attention, follow instructions, and read and write. The doctor who performs the test takes into account the patient’s level of education and nervousness.
An assessment also should include a neurological exam that tests the patient’s reflexes and sense of balance. The doctor might order other tests, such as an MRI or PET scan.
After receiving a diagnosis, you and your loved one will have many decisions ahead about what specialists to consult, what medications and other treatments to use, and where the loved one will live. If you educate yourself about your parent’s condition, these decisions will be easier.
How Involved Should Family Be in Caregiving?
When family members decide their loved one needs help caring for himself or herself, the level of involvement can be determined by need, emotional closeness, and location.
- Need is based on the loved ones’ ability to perform tasks like showering, preparing and eating meals, answering the telephone, etc. We will talk more about need later in the article.
- Emotional Closeness. How you see your own child-parent relationship (and how your siblings do) is how you measure emotional closeness. How close you are to your parent is largely a result of life experiences. When your parent needs immediate care, it’s a time for brothers and sisters, as well as parents and children, to forgive and reconcile with each other.
- Location or proximity of the parent to the caregiver is important for different reasons. For example, adult children who have parents that do not live with them or close by have a difficult time providing care. If the adult child acting as caregiver lives too far away, the adult child’s attention is more easily taken up with his/her own family and employment responsibilities.
The Basics of Caregiving
Caring for an aging family member is multi-dimensional. Many books have been written to help caregivers (see the resources list at the end of this article). We cover some of the basics here.
Determining severity. Each illness associated with aging has different mental and physical symptoms. The severity of symptoms is often gauged by the loved one’s ability to perform everyday tasks. “Activities of daily living” (ADL’s) are basic self-care tasks such as eating, dressing, reading, bathing, walking, and using the restroom. “Instrumental activities of daily living” (IADL’s) are the more complex tasks of living, such as preparing meals, shopping, driving, managing finances, using the telephone, and taking medications.
If your loved one is having trouble with IADL’s, she might be able to live independently until the illness progresses. If, for example, you can prepare meals for her, she can eat them on her own. If she’s having trouble with ADL’s, however, she will need more intensive caregiving, including help with eating rather than preparation alone.
Eating and meal preparation. Preparing food and eating it requires thought and physical movement. Physical disabilities that affect your loved one’s upper body will make eating and cooking more difficult. If the loved one has some form of dementia, the brain won’t be able to tell the body when, where, and how to eat. Preparing a meal might be impossible.
If your parent or spouse is unable to visit the grocery store, some stores will deliver groceries for a fee. The Meals-On-Wheels Association of America provides meals for men and women who are elderly, homebound, disabled, frail, or at risk.
Personal hygiene. An aging loved one with memory disabilities has trouble remembering when, where, and how to bathe, wash hands, comb hair, brush teeth, use the toilet, and shave. He might even have trouble finding the bathroom. He will need help from a caregiver with all these activities. Many other illnesses cause weakness or unsteadiness to the point that help with personal hygiene is needed.
Getting around. For some older adults, walking from the bedroom to the bathroom becomes difficult. If your loved one can’t walk a short distance, he or she might not be able to get to a telephone in case of an emergency. He might need a walker, wheelchair, cane, or crutches. Many of these items can be rented or purchased through hospitals and medical supply stores. Be thoughtful about planning activities that require a lot of walking.
Modifications you might make in your home or your loved one’s home include:
- Lowering the bathroom sink and mirror.
- Adding rails to the walls to prevent falls and to help the person get on and off the toilet.
- Purchasing a portable shower chair for the bathtub or shower. Not every chair is safe for this use, so find one at a home medical store or one labeled for this specific use.
- Changing door and faucet handles to ones that can operate using an open or closed fist.
- Replacing thick carpet with flatter carpet or a surface that lets a person walk more easily with a cane, walker, or wheelchair.
- Widening doorways so your loved one has enough space to use a walker, cane, or wheelchair.
Medication mishaps. Loved ones with a memory disability can make medication mistakes that cause injury or accidental death. When they don’t remember to take their medication, they might have a recurrence of symptoms that can be uncomfortable or dangerous. When they overdose because they don’t remember that they already took their medication, similar consequences can result.
You can help your parent or spouse remember to take his or her medication by writing notes, making phone calls, or dropping by when needed. If you live with your loved one, you can remind him verbally or you can hand each dose to him at the right time. Depending on how severe the memory loss is, you can do the following to prevent overdoses:
- Organize medications in a container that separates dosages by day and/or time of day. Most pharmacies sell these containers.
- Store medications in a lock-box. Most office supply stores carry them.
Driving and transportation. Vision and reaction time deteriorate with age. Older adults need your help to make sure they are not a danger to themselves or others. If they should no longer drive, they likely will be reluctant to give up their driver’s license and the independence that driving gives them. Like teenagers, they see driving as a lifeline to the world around them. Talk to them sensitively and lovingly but firmly about driving concerns. In some cases, you might need to take action that angers your loved one, such as taking away keys or requiring them to take a driving test at the Department of Motor Vehicles. Stand firm in this important responsibility.
Health care and finances. Personal pension plans, investments, 401k plans, and Social Security are the main sources of income for the elderly, but they can be confusing. Understanding the rights and benefits of each program takes time and patience. To ensure a loved one receives the information and help he/she needs, be ready to become a legal advocate if needed. Make sure you educate yourself about Social Security, Medicare, and Medicaid. The websites of the American Association for Retired Persons (AARP), Social Security, and Medicare are easy to use. You can also consult with a state social worker if needed.
Recreation. Recreational activities renew the spirit and help your loved one avoid isolation and stay connected to others. They also promote mental and physical health and provide opportunities for self-expression, exploration, and relaxation. Depending on your loved one’s mental and physical condition, he or she might enjoy activities such as drawing, painting, dancing, Tai Chi, water aerobics, board games, and card games.
You can find programs and facilities for such activities by searching the Internet and contacting local senior recreation centers. Adult daycare centers provide a variety of activities, many of which are geared toward those with Alzheimer’s disease.
Change of residence. When a parent can no longer live independently, moving may be necessary. Moving is difficult for an older person who usually is attached to his or her surroundings and might be disoriented by change. Search out the options, such as living with a family member, moving to an assisted living facility or nursing home, or hiring someone to live with the loved one. If possible, include your loved one in your discussions. If your loved one is developing hostile or combative behaviors, you might need to consult a social worker (available at most facilities) to help you make the transition as smooth as possible.
Finding Out and Honoring a Loved One’s Wishes for Later Life
It is vital that families discuss the financial and health care issues of aging parents and spouses sooner rather than later. If decisions are made before a loved one is diagnosed with a disabling condition, the loved one can more easily make his or her preferences clearly known.
An Advance Directive document spells out a person’s wishes should they become too ill to make medical decisions. Without this document, which must be signed while a person is competent, family members are left to their best guess about what the loved one would want. The issues covered in the document are useful to consider, even if the document itself is never used. Issues include:
- Who do I want to make health care decisions for me when I can’t?
- What kind of medical treatment do I want toward the end? For example, do I want all measures possible taken to save my life, including artificial respiration and tube feeding? Or do I want a Do Not Resuscitate document drawn up?
- What would help me feel comfortable while I am dying?
Other legal documents you should consider include a financial Power of Attorney, a medical Power of Attorney, and a Living Will. Because situations and preferences vary, some of the documents may or may not be necessary. Families should investigate the options together.
Creating a Family Caregiving Plan
Caregiving usually works best if it is shared among several family members. If one person volunteers to be the main caregiver, other family members should still consider themselves part of the caregiving team and make sure the main caregiver gets plenty of rest and breaks.
The blessings of caring for a loved one can be great, but caregiving also requires sacrifice. Taking care of a loved one always requires time and energy. It might also mean missed opportunities, lost income, and added expenses. Caregivers should be aware of these sacrifices and make sure they’re ready to make them.
Here is a summary of some of the more common caregiver stresses that families should consider as they develop a family caregiving plan for their loved one. Families should keep in mind that plans can be adjusted and overhauled as needed.
- Part-time or full-time supervision. The hours needed for caregiving can range from a few hours a day to 24-hours a day.
- Supervising others who provide direct care. Arranging, coordinating, and monitoring services provided by family members, friends, and medical professionals can be time-consuming and stressful.
- Income loss. Family members who provide care often can no longer work their normal hours. Income thus goes down. In some cases families find they need to finance the needs of the loved one, from remodeling costs to medical copayments.
- Sibling rivalry. Disagreement about caregiving or jealousy among the loved one’s children is common.
- Traveling to and from the loved one’s home. These expenses can become quite high, even if the loved one lives relatively close.
- Maintaining two homes. Many caregivers find they must maintain the caregiver’s home as well as their own.
- Listening, talking, and providing emotional support. This dimension of caregiving can be emotionally rewarding but also emotionally draining. Some people are better than others at the nurturing approach that aging people need.
As a family decides together who will provide care, the potential caregivers should consider the following questions:
- What level of care is needed? The disability will determine how much time and attention the loved one needs. Caregivers need to let the loved one be as independent as the disability will allow.
- How much can I do? Caregivers need to think carefully about what they are willing to do and able to do.
- Who can help? Caregivers should assess together what informal help is available from family, friends, neighbors and clergy. They should also assess what formal help is available and affordable from in-home health care, respite care, adult daycare, and other sources.
If a family finds itself in conflict about the caregiving plan, family members should consider consulting with a professional who can help them sort out the options and make sound decisions.
Caring for the Caregiver
Taking care of a loved one can be very satisfying and rewarding. However, the work is not easy, and many caregivers experience sadness, depression, or anger. When these symptoms progress over a period of time, caregivers can find their own physical and mental health breaking down. When this happens – caregiver burnout – the consequences can be dire.
One of the most important things caregivers can do to prevent burnout is to accept help when it is offered. This may sound easy enough, but it means realizing that the work is more than any one person can do. For some people, accepting that reality is very difficult.
Those who want to help can approach a caregiver with the message that others would like the opportunity to serve both the ailing loved one and the caregiver. Avoid sending a caregiver the message that he or she isn’t up to the job.
Other strategies for reducing the risk of caregiver burnout are listed.
Express Your Feelings
- Write in a journal about the events and feelings you experience.
- Talk to a trustworthy friend or family member who knows about the situation.
- Attend a support group for caregivers who take care of loved ones with the same or similar disability.
- Seek counseling before feelings of burnout progress.
Sustain Your Health
- Eat healthfully and exercise daily.
- Get enough sleep and take naps whenever possible.
- Take time for your own doctor, dentist, and other health-related appointments.
Fill Your Well
- Don’t take the minimum breaks possible. Take breaks whenever you can get them.
- Line up activities that are renewing for you, then grab any chance to enjoy them.
- Keep up your friendships.
- Let others do things for you.
Benefits of Taking Care of a Loved One
Caring for your parent or spouse may appear to be a relationship where one person gives and the other receives. However, research shows that the relationship actually goes both ways. Adult children caregivers experience moments of warmth, comfort, pleasure, feeling appreciated, and great satisfaction. The caregiver also has the chance to hear and enjoy stories of the loved one’s life that he or she may never have told before.
Caregiving offers the opportunity for a uniquely intimate relationship. Caregivers provide companionship, warmth, comfort, and peace of mind. This gift enhances the relationship on both sides, and important memories are created. One daughter whose mother became ill with Alzheimer’s writes:
On Fridays I take her for a ride after dinner. We drive through Federal Heights and she exclaims over the beautiful houses. We drive through the upper avenues-more beautiful houses. We drive down through City Creek. Every week, she says the same thing: “This is beautiful. I’ve never been here before.” We drive past the Capitol building. She looks with interest at this building that she says she’s seeing for the first time. She reads all the signs aloud…She points at ever passing church. “Stop, 4 Ways,” she announces at a corner. “No, I won’t,” I say and accelerate through the intersection. She laughs with glee, like a child, and so I do it at every stop sign.
When the person being cared for passes away, many caregivers take comfort in knowing they spent extra time with their loved one. Caregivers may also feel an extra sense of relief that the loved one’s suffering is over. And they can take advantage of the greater knowledge and experience they now have to share with others and to help them prepare for their own older years. One author noted:
As our life expectancy lengthens, most of us will need to deal with the challenges of retirement and aging. By helping others deal with those challenges, we not only learn to deal with them ourselves, but we are also better for having shared our homes and our hugs with those who have time to share and love to give.
For Further Reading:
The 36-Hour Day: A family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life (3rd ed.), by Nancy Mace and Peter Rabins.
The complete eldercare planner: Where to start, which questions to ask, and how to find help (2nd ed.), by Joy Loverde.
How to care for aging parents, by Virginia Morris and Robert Butler.
Caregiving in General
- Administration on Aging
- Care Pathways
- National Family Caregivers Association (NFCA)
- United States Department of Health & Human Services
- American Association of Retired Persons (AARP)
- Elder Care
Social Security & Health Insurance
- American Association of Retired Persons (AARP)
- United States Social Security Official Website
- Medicare Official Website
- National Association of Home Builders Research Center (NAHBRC) http://www.nahbrc.org/about2.asp?TrackID=&CategoryID=1830
Food (Groceries & Meals): Online grocery and meal delivery services require a zip code or other address information to check area availability and item choices.
- Reference.com: Web directory for multiple online grocery stores
- Meals-On-Wheels Association of America (MOWAA)
Financial & Legal Information
- Elder Law Answers
- Aging with Dignity.org: a preview of the 5 Wishes