Sanford Center for Aging Guidebook

Caregiver burnout is common among caregivers. This happens when a caregiver is exhausted physically, mentally, and/or emotionally and needs immediate support and relief from caregiving responsibilities. If you begin feeling overwhelmed, helpless, impatient, and/or irritable, reach out to a friend or family member for immediate help. The following information goes over techniques for relieving stress and preserving a healthy relationship between the caregiver and the person you are caring for.

Do not set yourself up for failure. Know your limits and set goals that are obtainable and will make you feel good. Remember to give yourself credit for achieving these goals. 

It is important that you acknowledge your feelings and talk to someone you trust and feel comfortable with. Do not expect others to know your needs. Express them!

It is important that you keep up on your own health and consider yourself. Remember to eat well, exercise regularly, sleep well, and rest a little bit every day. Participate in pleasant, nurturing activities, such as reading a good book or taking a warm bath to maintain your mental health as well.

Laughter and humor can bring balance to your life and emotions. Keep a positive attitude, share fun stories with the person you are caring for and other caregivers, and remember to laugh at least three times a day.

Being able to identify and communicate with family members and other caregivers going through similar situations can bring a sense of relief and reduce isolation. There are many support groups available specific to medical, emotional, and physical disabilities.

The power of knowledge and information is key to relieving many stress factors. With increased knowledge, you can better prepare for the future and more effectively handle challenging situations. The library or internet can be great and accessible tools for obtaining information; just be cautious of where an article is coming from. Explore local resources or contact us at wellness.sca@unr.edu or 775-784-4774.

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There is a difference between caring and doing. Be open to technologies and ideas that promote the independence of your family member as long as possible.

One of the negative impacts of caregiving is isolation. It is important to socialize with friends and/or family, start a new hobby, or return to one you enjoy. The point is to stay involved and active in things you like and that relax you.

Respite means “time off.” Respite can be provided by a friend, family member, or by a service in the community. It can be enough time for you to take a nap, go to lunch with friends, or even enough time to go on vacation.

As a caregiver, it is very important that you understand that it is okay to share your work and responsibilities. Do not be afraid to accept the help that others are offering, or to delegate some of your duties. Be as specific as possible in what others can do as team players.

Mealtime can be a great experience for the person you are caring for, but it can also be a stressful experience if they have difficulty eating. Being relaxed and allowing plenty of time for meals can improve this experience. Be aware of the difficulties your family member has while eating and make accommodations. If they have difficulty seeing, describe to them where the utensils, napkin, and drinks are located. If they have difficulties chewing, choose foods that are softer. If they have trouble feeding themselves, ask if you may help before you step in to feed them.

Recognize the abilities of your family member in order to prevent falls. Notice when they begin to have more difficulty walking and what shoes are worn. Slip-on shoes or slippers increase the chance of falls. Make sure you also know when the person you are caring for needs to use durable medical equipment (DME) such as a cane, walker, or wheelchair. Speak with their primary care doctor to learn more.

Transfers are usually a large concern for caregivers. You will want to see the level of help your family member needs to transfer from the chair to bed, toilet to chair, etc. and learn how to safely assist them. It may take a professional to teach you how to transfer someone. Do not jeopardize the safety of yourself or the person you are caring for by trying to do transfers without knowing exactly how or without having the strength to perform them properly.

The greatest number of home accidents occur in the bathroom, which is why bathing and showering are such a large concern. There are precautions you can take to make this time safer for both the person you are caring for and yourself.

• Put adhesive strips or a rubber mat on the bottom of the tub or shower to make the surface less slippery when getting in or out.
• Put grab bars inside and outside the shower or tub (see the Home Safety section).
• Use a shower bench for your family member to sit on while showering.
• Make sure you are giving the person you are caring for your full attention as they get in or out of the tub. Depending on their abilities, both physically and mentally, this may mean simple supervision or assistance.
• Do not perform any activity that could be dangerous for you or the person you are caring for. If you do not feel comfortable helping the person get into and out of the tub, ask a professional to teach you the best practices.
• Determine the best time to complete a bath or shower depending on both your preferences.

Encourage the person being cared for to dress him or herself as much as possible. Learn when they need assistance. If a person has weakness in one side of their body, it is recommended to dress that side first (putting the weaker arm into the sleeve or the weaker leg into the pants first). You may need to assist when the person rises to finish dressing or they may need some assistance with buttons or zippers.

Depending on the level of care needed, you may need to provide assistance with simple reminders to use the toilet, or your care may be as involved as changing an adult brief. If the person you are caring for requires minimal assistance, there are a couple of easy tips you can use to ensure that their care needs are met. Make sure that the path to the bathroom is always kept clear and well-lit at night. If they have difficulty sitting down and getting up, install grab bars and an elevated toilet seat or even a taller toilet.

Urinary incontinence is a normal part of aging. When dealing with incontinence issues, adult briefs or incontinence pads are an option depending on the severity. If the incontinence becomes more of a problem, contact a doctor. Bowel incontinence is less frequent, but if it occurs, contact a doctor for tools to help.

Personal hygiene is important for the person you are caring for and can become difficult for a person as they age. An individual’s inability to maintain their hygiene is a sign that they are becoming less able to care for themselves. Notice if your family member is still able to brush their teeth or dentures, comb their hair, and maintain their appearance. These are indicators that they may need more assistance. If there are significant changes in their hygiene, contact their doctor, as it could be signs of a larger problem.

Please download the PDF of this Nevada Caregivers Guidebook for a needs assessment chart. Fill out this needs assessment chart to identify the strengths of the person you are caring for and where your help is most needed.

Alternatively, identify whether the person you are caring for can accomplish the following tasks alone, with some help, or with much help.

• Bathing
• Dressing
• Maintaining personal hygiene
• Toileting
• Preparing a nutritious meal
• Eating a nutritious meal
• Getting out of a chair or bed
• Walking
• Climbing stairs
• Using the phone
• Managing medications
• Driving or using public transportation

Make sure that your family member speaks for themselves if they are able to do so. Encourage them to share any physical, emotional, or mental concerns with the doctor, especially any changes in the family or living conditions which could be causing undue stress. As the caregiver, you can step in with information at an appointment if the person you are caring for forgets anything important about their health.

Before every visit, make a list of concerns. Prioritize what you both want to discuss. Ask about the most important things first.

Always take notes at medical appointments and make sure that you write down the doctor’s instructions so that you can go over what was said and done with your family member when you return home. Request a visit summary/printout if one is available. Write down the names of people who helped you and what they said.

Let the doctor know of any changes in physical function, appetite, weight, sleep, or any other changes that you might have noticed. Make sure that the doctor and staff know if the person you are caring for is having trouble seeing or hearing and if they wear hearing aids.

Asking questions is essential for good communication. Before every visit, prepare a list of questions you would like to discuss with the doctor. If you do not ask questions, the doctor may assume you already know the answer or that you do not need more information. Ask questions about anything that does not seem clear, such as when you do not know the meaning of a word or when instructions seem confusing or incomplete. There are no “dumb” questions; only unasked questions. Ask questions that will confirm your understanding. You might say: “I want to make sure I understand. Could you explain that a little more?” Do not be afraid to tell the medical professional if they have not answered your question.

Take a list of all medications the person you are caring for takes and the dose (the back of this guidebook has a section to fill out a list of medications). If you are worried about forgetting any medication, take all their prescriptions with you to the appointment. You should also take their insurance cards, the names and phone numbers of other doctors and pharmacists they use, and their medical records if they are seeing a new doctor

Some medicines cause unpleasant and/or dangerous side effects. Discuss the medicines being taken. Make certain that the doctor knows how many are taken, why they are taken, and how often they are taken. Describe, or have the person you are caring for describe, any drug allergies or reactions to drugs that they may have had. If the doctor prescribes a new medication, discuss the potential side effects, the time of day it should be taken, and generic brand options. Generics are often less expensive than the original and your doctor will be able to advise you as to whether you should take the generic or original.

As part of the CARE Act passed by the Nevada Legislature in 2015, hospitals are required to provide the opportunity for a patient to designate a family caregiver. When a family caregiver is identified, the medical staff must inform the designated caregiver when a family member is to be discharged to another facility or back home. They must also provide the caregiver an explanation and demonstration of any medical tasks which will need to be performed at home. Make sure that you are designated as the caregiver if you will be providing care at home.

Companion care and personal care are often offered by the same agencies. These services are not usually covered by health insurance, including Medicare, but may be covered by longterm care insurance, voucher programs, and/or a Medicaid program called Personal Care Services (PCS). If not covered by insurance, these care services will require out of pocket payment. These providers are non-medical and do not assist with any type of medical treatment.

Companion care provides a companion who can assist with most tasks, including driving. They provide support if the one you are caring for is not safe alone.

Personal care meets the basic needs of an individual. Personal care staff members are certified in assistance with daily living tasks. They can prepare meals, give medication reminders, do light housekeeping, and assist with bathing and personal hygiene.

Home health provides in-home medical care for homebound patients, including a variety of in-home medical treatments. Generally, this service is ordered by the hospital doctor or a primary care doctor.

Ask your doctor to order an assessment to see if your situation qualifies for home health. Based on your needs, your doctor will assign a clinical team that could consist of nursing staff, therapists, social workers, and possibly aids. The level of care provided depends on the condition, care needs, and the insurance benefits available to the person you are caring for. Health insurance benefits vary, but often cover home health care.

Home health care can often be combined with personal care services to ensure a safe transition home and full support for your care needs. Communication with the hospital case managers, the doctor, and the selected home health company is critical to ensure everyone is on the same page regarding the care needs, support systems available, limitations, equipment, and supplies needed to facilitate that care. Try to make arrangements for home health care prior to leaving the hospital.

To decide which agency fits your needs, you will want to consider cost, certifications, specialized staff training, their communication with family caregivers, and the caregiver selection process. Once you have narrowed your search to a few agencies, call each and make sure that all your questions are answered and any concerns are addressed.

Make sure that the caregivers you hire are individually licensed or bonded in the state of Nevada. Agencies in the State of Nevada are licensed by the Department of Health and Human Services and survey results for the agencies are for public review. It is strongly recommended to review survey results before choosing an agency. Caregivers employed by an agency are required to receive training, be fingerprinted, and obtain a background check. Caregivers are supervised and the agency is responsible for the delivery of care. Always interview the person assigned to you to see if they will be a good fit.

Palliative care is a way to improve quality of life for someone who is being treated for a serious illness. Palliative care providers are experts in easing symptoms that cause distress, such as pain, nausea, vomiting, anxiety, constipation, sleeping, and breathing problems. They are also experts in coordinating different care, giving information to help with decisions, and creating an advance care plan.

Palliative care is given by a team of people who focus on the physical, emotional, and psychosocial aspects of advanced illness. The team may include a palliative care doctor or nurse, social worker, spiritual advisor, and others. For palliative care to be most effective, both the patient and the caregiver play an active role.

The goal of hospice is to give comfort and support to a terminally ill patient, their caregiver(s), and their family. Hospice focuses on quality of life and helps someone live his or her last days with a sense of control. Hospice programs support both the patient and family and include physical, emotional, and spiritual services.

A person with an illness can go into hospice when a health care provider believes he or she has about six months or less to live. Hospice continues as long as it is needed. If a person’s health improves, he or she can end the hospice care and start it again later.

Hospice is most commonly provided in the home. It can also be offered in the nursing home, assisted living facility, or hospital depending on the person’s care needs. Hospice care is provided by an interdisciplinary team, which includes doctors, nurses, and other health care professionals. A registered nurse (RN) case manager coordinates care provided by the hospice team.

These programs provide respite care for the caregiver or may be needed if the caregiver is working and the person being cared for cannot be left alone. Adult day care centers offer a safe environment and provide social interaction, which is important to the well-being of both the person you are caring for and for yourself. Most centers offer full-time or part-time availability.

For the much needed vacation or an emergency requiring you to be gone for a few days, there are programs that offer overnight and respite stays. 

Adult day care centers and long-term care facilities charge for these services and require some planning ahead. There are scholarship funds available. Long-term care insurance policies may also cover costs. As with most programs, one size does not fit all. Review all options before you make a choice and ask for suggestions from fellow caregivers. 

Neighbors and friends may offer to have your family member visit while you take a break for a few hours. Reach out to trusted individuals and be honest with your need for assistance. 

Assisted living or group homes provide meals and care with daily living activities, such as dressing and bathing. They do not provide nursing care and many do not have a nurse or other medical professional on staff. Assisted living locations range in size from homes with two to ten seniors being cared for to larger locations with 50 or more residents. Residents may leave freely. Assisted living often provides transportation to residents for shopping or medical appointments. It is common for seniors to be placed first in assisted living and later moved if care needs increase.

Memory care is a locked assisted living community providing security as well as meals and care with daily living activities. These communities provide transportation to residents for medical appointments. They often do not provide nursing care and do not have a nurse or other medical professional on staff. Residents may not leave freely and are constantly monitored to ensure their safety.

Skilled nursing has full 24-hour medical staff including nurses and at least one doctor. Skilled nursing locations are generally large with more than 50 residents. Residents are monitored and can leave under certain circumstances. Skilled nursing provides total care and transportation for medical appointments.

• Sidewalks and curbs are free of uneven surfaces and cracks. Trees and bushes do not interfere with walking and vision.
• Access to the entrance has no steps, steps with handrails, or a ramp with handrails.
• There is adequate automatic lighting that comes on when darkness falls.

• Walking surfaces have low cut carpet or flooring that does not present a slipping hazard.
• There is adequate lighting throughout the house and night lights that come on in the dark, especially in hallways leading to the bathroom.
• Doorway spaces are wide enough to accommodate a wheelchair, walker, or someone assisting.
• Areas are free of clutter and sharp corners.
• Throw rugs are anchored to the floor or removed.
• Chairs, couches, and sleeping surfaces are firm and high enough to allow comfortable and safe transfers and do not have wheels or casters.
• Phone, lamp, and extension cords are out of the flow of foot traffic.
• Phone is easily accessible or mobile in case of emergency. Personal emergency report systems can also be arranged through the hospital or other providers

• The toilet seat is high enough to allow a person to sit and stand safely.
• The shower/bathtub has non-slip flooring and a shower hose that adjusts to sitting level.
• Bath bench is installed. Safety bars are placed by the toilet, bathtub, and shower. Towel racks are not strong enough and should never be considered a safety bar.
• Flush handle and toilet paper dispenser are accessible.