Having a loved one in a nursing home can be a confusing and emotional experience. Understanding the various aspects of nursing home care and learning how to handle your concerns which may arise will greatly contribute to the success of your loved one’s stay. These 12 tips will help improve your communication with the facility staff and help to clear up common misunderstandings.
1. Have realistic expectations.
It is important to have realistic expectations about the nursing home environment and the amount of care your loved one will receive. Although nursing home care (also known as skilled nursing facility care) is often referred to as “24-hour” care, it rarely means one-to-one care, 24 hours a day. Certified Nursing Assistants (CNAs) will typically each need to care for eight to fourteen residents during a shift. In addition, their extra duties required during meals and at change-of-shifts usually make staff even less available to help your loved one during those times.
Physicians do not make routine daily or even weekly visits to the nursing home and rarely have a set time to visit the facility, often making visits late in the evening or on the weekends after their general practice offices are closed. However, the facility’s nurses are in constant communication with the patient’s physician by phone, reporting on the patient’s status, lab and test results and changes in condition. If you need to speak to your loved one’s physician, ask the facility’s nurse to have him or her contact you.
2. Understand the purpose and extent of the care.
Some residents and family members believe that the nursing home staff should be personal attendants to the residents and do everything for them. This is counterproductive to the goal of rehabilitation, which requires that each resident be encouraged to do as much as possible independently. However, although independence is vital to self-esteem and crucial to meeting rehabilitation goals, safety is always a paramount concern. Therefore, for example, if your loved one is at risk of falling, it will be important that that he or she not try to get up out of bed without the assistance of facility staff.
3. Important tips upon admission
It is very important that you provide the facility with a copy of all of your loved one’s legal documents that relate to his or her wishes regarding health and personal care and that designate an agent for such care. These documents include, but may not be limited to, an Advance Health Care Directive, Physician’s Order for Life Sustaining Treatment (POLST), Durable Power of Attorney for Health Care, and/or Conservatorship papers.
The facility does not have the time to communicate information regarding your loved one’s care to multiple family members. Therefore, it is important that one person be assigned as the “responsible party” to communicate with the facility. If your loved one has executed an Advance Directive for Health Care or a Durable Power of Attorney for Health Care, the responsible party should be the person named as your loved one’s primary agent under that document. If the primary agent consents to a different person being the contact person for the facility, the agent should nevertheless stay informed and available (at least by telephone) in case an emergency arises requiring the agent to make a medical decision. The agent (or other contact person) should communicate any news regarding your loved one’s care to the other family members.
Do not bring valuable personal property to the nursing home as it may disappear for a variety of reasons, including getting misplaced, being taken by a confused resident, going down the drain in the shower, etc. Also, label with your loved one’s name all of his or her personal items that will be needed while in the facility, including eyeglasses, dentures, and hearing aids. Your loved one’s clothing should all be washable and not require ironing. Document ALL of your loved one’s items that are brought to the facility on the facility’s inventory list and update the list when new items are brought in or items are taken home.
4. Know the Medicare rules.
Medicare will pay for a limited amount of care in a skilled nursing facility provided that certain qualifications are met. In order to receive ANY coverage by Medicare, the patient must be admitted to the skilled nursing facility within 30 days following a qualifying minimum 3-consecutive-day inpatient hospital stay. Qualifying days do not include any days in the hospital merely for observation or while in the emergency room. There have been cases where a patient has stayed in the hospital for a week or more without being officially admitted, so the hospital stay did not qualify the patient for Medicare coverage in a nursing home. The care in the skilled nursing facility must be for the SAME condition treated during the hospital stay and be needed for medical or rehabilitation purposes.
In almost all cases, Medicare will only continue to pay for care in the skilled nursing facility provided the patient is making progress and the potential exists for additional improvement. As long as the above conditions continue, Medicare will assume full financial responsibility for the patient’s care in the skilled nursing facility for up to 20 days . If progress is still being made and it is deemed medically appropriate to continue with the care plan past day 20, Medicare will continue to cover PART of the cost of the patient’s care from day 21 up to day 100. The balance of the patient’s cost of care during these 80 days will be a co-payment charged to the patient or to the patient’s supplemental insurance carrier, if any.
However, there is NO GUARANTEE that Medicare will pay for the entire 100 days of care . In fact, patients rarely qualify to receive all 100 days of coverage under Medicare. Usually, as soon as the patient stops showing progress, no matter how many days of care they potentially have left, Medicare will discontinue coverage. If you disagree with the determination and believe that your loved one can still benefit from further therapy and that the care is still medically appropriate, even if only to maintain, rather than improve, his or her level of functioning, you may appeal the Medicare determination by calling (800) 841-1602. You can also find information on how to appeal from the Center for Medicare Advocacy at www.medicareadvocacy.org. However, if your appeal is denied, the patient will be completely financially responsible for the cost of the care from the date Medicare stopped coverage. Also, supplemental insurance coverage will normally not cover any time after Medicare coverage stops.
5. Meet with the nursing home staff.
It’s important to be familiar with the Executive Director or Administrator, Director of Nursing (DON), Social Services Director, Head of Dietary Services, rehabilitation therapists, and nurses responsible for your loved one in the nursing home. Know what their roles and responsibilities are in relation to your loved one’s care, and by all means, inform them of any special issues pertaining to your loved one.
6. Get to know the Certified Nursing Assistants (CNAs) .
CNAs provide most of the care to residents. Be courteous to them but be clear about anything your loved one needs. The better the relationship you establish with the particular CNAs caring for your loved one, the easier it will be to talk with them.
7. Understand dietary precautions.
Always, always check with the CNA or nurse BEFORE giving any food or drink to your loved one or another resident. Some residents are on restricted or special diets, or require foods or liquids of a specific texture or consistency to prevent them from choking. Giving a resident the wrong type of food or drink (even water!) can be potentially dangerous or harmful.
Also be aware that what is considered a “diabetic” diet at the facility may not be as strict as the diet your loved one follows at home. Discuss any concerns regarding your loved one’s diet with the head of Dietary Services.
8. Respect your loved one’s rights.
Your role as a family member is to help communicate your loved one ’ s preferences to the staff. It is recommended that you provide the facility with a written personal summary of your loved one’s daily routine, so that the staff can understand better how to accommodate and meet his or her needs.
However, a resident’s wishes always come before those the family may consider important. For instance, if your loved one wants to return to bed but you disagree because you think he or she spends too much time in bed, the staff cannot violate your loved one’s personal rights and will allow and assist him or her to return to bed.
In addition, the resident has the right to be free from restraints, even if you’re worried about his or her safety. Restraints can be used only if a doctor determines them medically necessary. Some examples of restraints are bed rails, seat belts, and even medications, when inappropriately used to control behavior, for discipline or for staff convenience.
Unless a court, as part of a conservatorship proceeding, has determined that your loved one lacks capacity to understand and make decisions about medical treatment, your loved one has a right to know his or her true diagnosis and prognosis and to be informed of any changes in treatment or care, and should not be given any medications without his or her knowledge and consent.
9. Respect other residents ’ rights.
As neither Medicare nor Medi-Cal will cover the cost of a private room, it is likely that your loved one will share a room with one, two or sometimes even three roommates. Although a resident should feel at home in the nursing facility as much as possible, it’s important to respect other residents’ rights regarding noise levels, privacy, and visitors. Being considerate of your loved one’s roommate(s) is important to the well being of both your loved one and his or her roommate(s). Know the facility’s visiting hours and be especially considerate when visiting outside of normal visiting hours. It may be necessary to visit with your loved one in another room at the facility if the visit is too noisy or disruptive to the roommate(s). This is especially true during night-time hours when many of the residents are trying to sleep.
If your loved one desires to watch TV or listen to music at a loud volume, especially when his or her roommates are trying to sleep, it may be necessary for him or her to use headphones.
Do not hesitate to notify social services if there are serious roommate incompatibilities. A room transfer may be possible.
10. Visit and Participate as much as possible.
The best way to monitor your loved one’s care and identify any problems or concerns is to visit your loved one often and participate in the care process as much as possible. Find out when he or she is receiving rehabilitation services and come in to observe them. Your frequent presence helps to reinforce to your loved one and to the staff how much you care.
A full-care plan is created by the facility’s interdisciplinary team upon your loved one’s admission to the facility and is updated at a “Care Conference” meeting held for him or her every three months. During these quarterly meetings, your loved one’s medical condition, rehabilitation progress, diet, activities, and other important information will be discussed. If possible, it is recommended that you attend these Care Conference meetings. Find out when the next one is scheduled for your loved one. As the meeting will be fast paced, prepare a list of your questions and concerns ahead of time and bring a copy to share with the team and discuss. If you cannot attend the scheduled Care Conference for your loved one, ask if it can be held at another time or if you can join in by phone.
Many facilities also have Family Council meetings where you can discuss issues about living in the nursing home. In addition, if your loved one is capable, he or she could participate in the Resident Council meetings at the facility. A Resident Council is an organized group of active nursing home residents who meet regularly to voice their concerns, offer their input on decisions, present suggestions for improving services and plan social activities. Ask when the Resident Council meets and, if appropriate, encourage your loved one to attend.
Most facilities will also allow and may even accommodate visits by a patient’s pets. However, before bringing the pets, you should find out and follow the facility’s policy on pet visits.
11. Communicate your needs and concerns.
Voice any concerns about your loved one’s care and life in the nursing facility promptly to the CNAs or the charge nurse. Keep a notebook to remember specifics, especially dates and times, of situations that you want to address. The more detailed you are, the greater the possibility that any problems you identify will be corrected. Just saying “the food is terrible” or “the care is awful” makes it difficult for the staff to know what you mean and how they can correct the situation. Act as a problem-solver or option-creator, not a complainer, by answering the following questions: Can I prioritize the issues? What is unacceptable? What do I really want? What can I live with? By doing so, realistic outcomes are achievable. If you do not get a satisfactory resolution after addressing the problem with the staff most directly involved, then go up the chain of command.
However, before complaining about something, be aware of who is being upset by the situation. Is it you or your loved one? For instance, if your loved one’s clothes are not color coordinated, does it matter to him or her? Or, does it really just matter to you? As the old adage goes, pick your battles.
If your loved one does have a complaint (or even a minor concern) ask him or her how he or she wants to deal with the situation. Does he or she simply need to air feelings rather than have you confront the staff? Sometimes, simply listening is the most effective response you can give. Your loved one has to live in the nursing home, so it’s important that his or her wishes be respected.
Finally, and most importantly, be polite and friendly . A nursing home staff is comprised of people doing a very challenging job. Lifting and moving adults who are unable to help themselves is physically demanding. Understanding the needs of residents who may be confused or unable to communicate for a variety of reasons is emotionally exhausting. Recognize that the facility has many residents and the staff is very busy all of the time. Nursing home staff members work hard to do a good job. Thank them for their efforts. You will accomplish more by being polite and friendly, rather than nasty and demanding, when requesting changes or bringing problems and/or concerns to the staff’s attention. If you continue to have difficulties resolving a concern, contact the Long Term Care Ombudsman Program for assistance at (800) 231-4024.
In summary, immediately document and report concerns to the staff directly involved; clearly state your concerns and the outcome you would like; and be respectful in your interactions.
12. Tips about discharge
When it is determined that your loved one will be leaving the nursing facility, if you have any questions or concerns about how to care for him or her at home, arrange for training with the rehabilitation team several days in advance of the day of discharge from the facility. It is also important to set up an appointment with your loved one’s regular Primary Care Physician within 24-48 hours of discharge so that any changes in medications or care can be discussed.
Temporary, part-time, and limited Home Health Services needed by your loved one when he or she returns home will be covered by Medicare. To arrange for these services you will need the facility physician to write an order for the services that will be needed. Once you have that recommended order, the home health agency that you choose must contact your loved one’s regular primary care physician to write the order for the continuation of services. It is your responsibility to make sure this contact with the primary care physician happens as, without the primary care physician’s order, Medicare will refuse to pay for the continued home health services.
Final Thoughts …
Remember, no matter how good the nursing home, issues may still arise. More than one person will be looking after your loved one, making communications and systems difficult to manage at times. One of the challenges you will face is figuring out the system and how it works, otherwise you will be setting yourself, your loved one and the nursing home up for failure.