Medical studies repeatedly show that family caregivers of older adults are at a greater risk of health problems than the general population. The reason: caregiving situations typically last several years over which stress can build. Self-care often takes second place behind care for the older adult.
While family caregivers are frequently in and out of the health care system on behalf of the person they care about, they often don’t give the same attention to their own personal needs. They make and attend medical appointments with their older adults, learn about their older adults’ illnesses, manage or personally handle care after a hospital stay, and follow up on daily care of an older adult in a nursing home or even in their own home. Because caregiving can be a 24-hour a day responsibility, it’s easy to see how a caregiver might miss the signs of their own physical and mental health problems.
There are symptoms that result from chronic stress and self-neglect. Some symptoms to watch for are difficulty with concentration, disturbed sleep, depression, feeling overwhelmed, being irritable, frequently tired and having certain pains or illnesses (i.e. back or neck pain, headaches or stomach problems.) Even having a common cold that doesn’t seem to go away can be an indication that you are worn down or your immune system is weakened. Because of the significant health risks associated with family caregiving, it is important for family caregivers to have annual health check-ups. Taking regular breaks from caregiving duties and sharing caregiving responsibilities with others are also important to a family caregiver’s health.
Practicing self-care benefits everyone – your own life and the lives of the people who depend on you.
As a family caregiver, it’s important to respect the wishes and dignity of the older adult you care about; however, sometimes older adults may not ask questions or be self-advocates with medical providers. Caregivers are often put in the position of providing guidance and advocating for the medical care of an older adult. Communicating with a doctor who treats the older person can be challenging.
If you go to doctor’s visits with the older adult, physicians tend to be willing to speak with you about your older adult’s care. However, it is advisable and many physicians require that a Power of Attorney for Health Care form be completed giving you that power. It can be placed in the care receiver’s medical file so there is no question that the physician may speak with you about health concerns and treatment without violating any confidentiality rules.
The following are some things to keep in mind and tips for better communicating with your older adult’s medical providers: Have medical information handy. Always have a current list of the older adult’s prescribed medications, over-the-counter drugs and vitamin supplements being taken when seeing the doctor. Also, when blood work or other medical tests are done, make sure the doctor gives a copy of each report to both you and the older person. Keep the reports together by date. Take the reports to doctor appointments, especially when seeing a medical specialist who may not have all records.
Write down concerns and questions. Prior to visiting the doctor, it is best to write down any concerns and questions. Include personal issues with problems such as swallowing tablets or a schedule that may interfere with taking medications. The visit with the doctor is usually short and it is easy to forget everything you want addressed.
Speak up. Make sure you make your key concerns known at the onset of the visit to help prevent the doctor from jumping to conclusions about treatments or dismissing issues you believe are important.
Ask questions. Don’t hesitate to ask when words the doctor is using are unfamiliar or instructions are unclear.
Be informed. Learn about the older person’s illness or condition. Ask the doctor for literature about an illness or have him write down both the medical terms and general terms. There is lots of information in libraries, on the Internet and from health groups about health problems. Pharmacists are also great sources for information about medications. Make sure what the doctor and pharmacist say about a medication is not in conflict; if it is in conflict ask them to speak directly to each other.
Keep contact information. You and the care receiver should have a current list of the names, addresses, and the office phone and fax numbers of all physicians the older adult is seeing and has seen. Blood work and other tests often should be sent to both a primary doctor and specialist and you will be asked for address information. Also, if a doctor’s office is unresponsive to your telephone call or you are a long-distance caregiver, faxing your questions in writing to a doctor can sometimes prompt a response.
No matter what the circumstances, many first-time family caregivers feel as though they are entering unchartered waters. How and when a family caregiver approaches an older adult about care or help concerns will likely set the tone for the relationship’s future. Whether it is your first or tenth comment offering help or addressing a concern, it’s important to always be sensitive as to how your comments may be perceived.
Are you a family caregiver? A “family caregiver” may be a spouse, child, other relative or friend of an older adult who needs assistance. For example, you are a family caregiver if you provide periodic rides to activities, help with shopping, coordinate care services, speak on behalf of an older adult with health care providers or make sure an older adult receives services at an assisted living or nursing home facility. In all cases, you are an older adult’s link to the world of a completely independent life that he or she once had.
The right approach. Acknowledging the need for help can cause an older adult to grieve for the loss of complete independence, youth or better health. Whether due to age, chronic illness or a sudden illness, accepting help is likely not a welcome step. The best thing to do is to place yourself in your older adult’s shoes, and think about how you might react. An offer of help, expression of concern for his or her health or ability to do self-care, or suggestion to consider a life change such as housing can trigger feelings of insecurity or resentment.
Responses from an older adult can be affected by many things: the closeness or openness of your past relationship; the older adult’s outlook on aging, general willingness to accept help or personal awareness of health or self-care issues; or even your financial or other connections to the older adult’s property.
Simple comments can be signals of major life changes for an older adult. Expressions such as “This place has stairs. Maybe a single-level apartment/house would be better for you?” or “I can drive to you the grocery store. You don’t need to be driving,” indicate to the older adult that he or she may have to leave home or give up driving. No one wants to acknowledge deterioration of his or her own health or ability to do activities. This is why it is recommended to not make these comments randomly, but rather to take time to have a heartfelt discussion.
Immediate family members, like spouses and children, tend to take a “parental approach” to caregiving. Other relatives, friends and neighbors, depending on the closeness of the past relationship, may be less parental in their approach, but have a greater risk of being viewed as intruding on personal privacy.
In all cases, the older adult’s dignity and desire to remain independent need to be respected. Caregiving for an adult is not the same as caregiving for a child. Older adults should never be treated like children. They typcially have strong self-identities and preferences that children have yet to establish and usually more life experience than their caregivers. The older adult parent will always be “mom” or “dad,” and a spouse will always be a “husband” or “wife.” Relationships have histories that don’t go away with the need for care.
If the relationship was good, the older adult will want to maintain the previous relationship as much the caregiver. On the other hand, if the relationship had conflict and poor communication, it is unrealistic to think that these elements of the relationship will go away. In fact, the stresses of a family caregiving situation may make a poor relationship worse.
Sometimes if a relationship has been bad, being a family caregiver with frequent contact is not a good idea. Turn to others – siblings, a friend of the older adult or professionals – who possibly may be better caregivers. A bad family caregiving situation can make both people miserable and may lead to verbal or even physical abuse.
Even in good family caregiving situations, there are certain cases where outside help may be best. If possible, it is recommended to turn to professional resources for help with hygiene care, such as bathing and toileting assistance, for an older adult. Hygiene care is the most intrusive to personal privacy. Outside help with hygiene care may allow an older adult to maintain his or her pride and better retain spousal, parental and friend relationships with family caregivers.
Is it time to talk? If an older adult’s personal safety or health care concerns, these issues need to be addressed immediately. However, if possible, try to discuss the older adult’s feelings about health, housing and care preferences before they become urgent issues. This way, when the issues come up, you can better respect the older adult’s wishes.
The key to a good family caregiving relationship is open communication, mutual respect, a willingness to recognize personal limitations and asking for outside help when needed.
Sometimes family caregivers don’t hear about an older adults’ health problems until they become serious. For one reason or another, an older person may not want others to know he or she is sick, or won’t acknowledge illness as a problem. That’s why it’s important for family caregivers to ask specific questions and be thorough when addressing an older adult’s health problem with a physician or other health care professional.
The way a doctor deals with a health problem in an older adult can be different than how they might deal with that problem in someone younger. Some may be inclined to offer conservative treatment out of concern for the stress that may be placed on the older person. Others may be concerned about an older adult’s ability to pay and may not suggest expensive medications or tests. Treatment may be modified because older people metabolize medications differently than younger people or can be at higher risk of problems with surgery because of age.
To get a complete understanding of the treatment options that are available, a good question to ask is: For someone age 40 with this same health condition, what tests, medications and other medical specialists would you recommend for treatment? If the recommendations are different than those given for your older adult, then ask: Why are your recommendations different? Write down questions in advance and take them along to medical appointments. This reduces the chance of leaving the office with unanswered questions. You’ll feel better having complete information.
Questions to ask medical providers …
What is the medical problem? What are the short-term effects of this illness? What are the long-term effects of this illness? Is the older person in any immediate danger … to stay alone, of having a stroke, heart attack or other sudden health problem, in need of immediately seeing a medical specialist (i.e. stroke, heart or other specialist), or is driving or doing other activities a problem? Are there medical tests that need to be done? If tests are done, will the older person need help getting home afterward? Can test results be sent directly to me and the older person to keep for our records? What medications are you prescribing? What possible side effects should we watch for? Is there a medical specialist we should see? What are the next steps in treatment? What can I do as a family caregiver to help?
If surgery is recommended, ask …
What are the possible complications? What are the long- and short-term expectations? What happens if the older person does not have the surgery? What is the success rate of the surgery? What is the rate of complications from this surgery? Is surgery needed now or can it wait? What are the other choices of treatment? Will the older person need home health care assistance? What kind? For how long? Where will this help come from? Is this care covered by insurance? What is the expected recovery? Is there time for us to get a second medical opinion?
“I don’t feel comfortable letting anyone else provide care.” If you’re a family caregiver, this may be how you’ve felt at one time or another. Not wanting to give up control of care is often due to fear – and love. You may be concerned about how your loved one will accept a new caregiver or that someone new won’t be able to provide the kind of care you can; but being the sole caregiver that can be an isolating and lonely experience. The best family caregiving should involve others and that means planning ahead.
Concern about getting outside help from professionals, volunteers, family members, or friends may be based on not knowing where to turn for assistance or a feeling of duty that you have about providing care. When it comes to personal care, transportation or other duties, you may be afraid that your loved one won’t cooperate with or accept help from anyone else. Or, your lack of turning to others for support may be based simply in love. You only want the best for the older person you’re caring for and feel that only you can provide that care. In addition to putting pressure on yourself to provide this care, sometimes pressure may come from other family members or the even the person needing care who feels most comfortable with you as caregiver. Love for the older adult – and guilt from others telling you to be the caregiver – may be stopping you from pursuing help.
However, an older adult’s total dependence on one person for care or help is not healthy for a primary caregiver - or the older adult. Family caregivers who don’t take breaks from caregiving responsibilities are at higher risk of health problems due to stress and depression. Also, if something happens to the sole family caregiver, the older adult is put at risk with no one else to step in and provide support.
Planned breaks from caregiving responsibilities help family caregivers keep a broader perspective about caregiving situations which can become all-consuming. Both the caregiver and the older adult need to have individual interests or hobbies and maintain personal lives, to the extent possible. Getting help from someone other than yourself gives your loved one the chance for social contact while giving you a break. Also, older adults often feel guilty about depending on family caregivers for help. Relying on others for help may relieve that guilt.
The best family caregiving situation includes planned breaks for the primary family caregiver and a well-developed Caregiving Contingency Plan – a plan that includes several options for care as well as people to contact who are willing to provide care. The plan can be useful for everyday help or if you have a personal emergency. Trying to find and use unfamiliar care or help resources during a personal emergency can be very stressful for you and the older person you’re caring for. Don’t assume others, such as family members or paid services, will be there to help in case of an emergency. Sometimes family members and friends who haven’t been involved in care don’t feel comfortable providing help at the last minute. Also, consider that paid homemaking and care services need time to do an assessment of an older adult’s service needs, so services usually can’t be started for several days.
Involving others on an on-going basis provides you with caregiving breaks and the peace of mind that support for the person needing care will always be available.
Many caregivers are hesitant to try a support group. For some people, the idea of sharing personal feelings with a group of strangers seems silly or intimidating.
Support groups are much more than “sharing feelings.” Groups are great for getting insights on how to handle specific issues, such as communicating with a difficult older adult or handling the stress of caregiving. They also a good place for exchanging tips on what community and professional care services have been helpful. Since groups are composed of people who are in similar situations, they are likely to have had similar experiences that you can learn from.
Every support group functions differently. Some support groups have informational speakers for part of group meetings, while others don’t have speakers; some meet weekly, bi-weekly or monthly; and most have facilitators who moderate for time or topic discussion, although some are unstructured. Many groups focus on illness-specific issues, involving both caregivers and the people who have the illness. A few groups are only men or only women. Support groups are usually free to attend. If you try but don’t like one group, don’t give up -- try another group. It may become one of your most important supports in your journey as a caregiver.
You may decide to attend a support group just for you, or you may find one that you and your loved one can attend together. Either way, you both benefit from not dealing with family caregiving concerns alone.
If caring for an older person is causing conflict within your family, you’re not alone. Conflict can often be part of family caregiving situations. Even the best of intentions may cause tension. Because everyone approaches family caregiving issues differently, individual family members’ opinions about what is best for an older adult can vary greatly. But there are steps you can take to keep family conflict at bay when dealing with caregiving concerns.
Why the conflict? Often, there are different attitudes toward family caregiving depending on gender, personality, or family situation. Sometimes men feel uncomfortable with caregiving issues, deny there is a need, or believe that female members should be responsible for caregiving. However, sometimes female family members take on caregiving responsibilities without consulting male family members. This can alienate male family members from offering help. Sometimes the family member with the strongest personality can dominate the decision-making process leading to conflict within the family. There are also situations where people who have their own families to care for expect an unmarried sibling or other relative to take on caregiving responsibilities. The unmarried family member may not welcome this expectation.
Minimizing conflict.Family caregivers need to recognize that conflict is not unusual and getting help is important. If differences continue, family relationships can be permanently damaged. Also, an older adult may feel guilt, believing he or she is the cause of conflict. The best way to approach family conflict is to get everyone together in the same room to discuss their feelings, create a care plan, and assign responsibilities. Face-to-face discussion eliminates the potential for misunderstandings due to information being received second-hand. If conflict continues, the next best step is to get everyone in the same room but with a non-family member in the discussion. This person should be someone whose opinion everyone agrees to respect – a family friend, health care professional, or even a mediator from a community mediation center.
A geriatric care manager, often a social worker or nurse, can also be a good alternative for handling caregiving conflict. A geriatric care manager is aware of care resources, has likely dealt with other family conflict situations, and knows how to develop care plans. In a family meeting, the care manager can offer advice on care alternatives and give tips on how family members can deal with conflict.
For family caregivers, managing the care of a loved one can become complicated. Often, there are questions that go beyond physical and emotional care. Does Medicare cover the care my mom is getting? What do I need to know about dad’s Social Security payments? Does mom qualify for Medical Assistance? Answers to these and other benefit and entitlement questions are available by contacting your local benefit specialist.
A benefit specialist is a person trained to help older persons and their family caregivers who are having problems with private or government benefits. Benefit specialists are often called "red tape cutters" because they are experts at helping older persons with extensive and complicated benefit programs. They help older persons figure out what benefits they are entitled to and tell them what they must do to receive them. All contact is confidential.
How can benefit specialists help? The benefit specialist is an advocate working on behalf of the older adult by providing accurate and current information about individual benefits and working to secure benefits or appeal denials of benefits. They assist with benefits information related to Medicare, Medicare Supplemental Insurance, Supplemental Security Income (SSI), Social Security, Medical Assistance, Consumer Problems, Age Discrimination in Employment, Homestead Tax Credit, Housing Problems, Supportive Home Services, Food Stamps, Veteran's Administration Benefits, General Relief and other legal and benefit problems.
Taking care of an elderly family member can present many challenges - deciding on living arrangements can be one of the biggest. If a living situation was working well in the past, but now seems unsafe, its time to consider a change. “Unsafe” can be the actual living circumstance (i.e. too many steps to climb) or the person isn’t taking proper care of him or herself (i.e. eating or hygiene.) Regardless of the reason, the wishes of the person needing care must be respected in any discussion of changing living arrangements.
Improving a living situation doesn’t have to mean moving out of the existing home. There are often many support services that will come to an older adult’s home to provide help such as delivered meals, chore services, or personal care services. Another option is having the person needing care go to an adult day center for one or more days per week. Personal care such as bathing can sometimes be taken care of at the center. Also, going to the center provides opportunities for socialization and gives the caregiver a break from caregiving duties.
For those who want to consider moving from home, there are many options – from senior apartments (some with federal subsidy and others without) to retirement communities that offer unassisted to assisted living situations.
Moving to housing with a minimum age requirement can be a positive move providing more opportunities for socialization. Also, if care services are needed, they may be readily accessible 24 hours per day. A skilled nursing care facility may become the best option when a person needs highly specialized, constant care. In the case of terminal illnesses (as determined by a physician), in-home or hospice care can be very good options.
Whether it is an in-home service or special housing, the older adult’s preference must be a priority. Family caregivers can assist with the decision, but an older adult’s wishes need to be respected. Also, it is best to check into several options, interview people, ask detailed questions, and tour facilities. Agreements for providing housing and services for older adults have become very complex, so check contracts carefully before signing.
Using an agency to hire paid caregivers may give older adults and their families a false sense of security regarding the background and skill set of the caregiver, according to a recent study. Just because it's an agency employee doesn't necessarily mean the caregiver is trained to care for an elderly person.
Researchers posed as consumers seeking a caregiver for an older adult relative. The study, published in the Journal of the American Geriatrics Society, surveyed 180 agencies around the country about their hiring methods, screening measures, training practices, skill competencies assessments and supervision. They found:
- Only 55 percent of the agencies did a federal background check.
- Only one-third of agencies said they did drug testing.
- Only one-third test for caregiver skill competency.
- Supervision ranged from none to weekly and included home visits, telephone calls, and caregivers visiting the office.
Based on these results, people looking for home caregivers are taking shots in the dark as to whether they will get a trained professional who provides quality care or one with no little-to no experience and training.
By being an educated consumer, you can find a qualified, reputable agency that employs caregivers who will care for your parent with compassion and skill. Here are 10 questions to ask before you hire a caregiver:
- Number one on the list is to go through a well-known agency. This doesn't necessarily mean a large franchise, but get references.
- What recruiting methods do they use? How are they finding job candidates? Newspaper ads? Staff agencies? Craig's List?
- What are their hiring requirements for prospective employees?
- What screenings are performed on caregivers before they are hired?
- Criminal background check -- federal or state? Drug screening?
- How does the agency assess what the caregiver is capable of doing? Does the agency train caregivers? What does that training entail? Are they knowledgeable about elderly health conditions and certified in CPR?
- Are the caregivers insured and bonded through the agency?
- Is the agency diligent about sending the same caregiver to the home, rather than a revolving door of strangers who parents don't know or trust?
- If you are not satisfied with a particular caregiver, will the agency provide a different person?
- Does the agency provide a supervisor to evaluate the quality of home care on a regular basis? How frequently?
Like so many things caregivers are responsible for, hiring in-home care requires due diligence, to make sure their loved one is safely cared for.