One of the most difficult transitions we may have to face as we age is the change from independent living in our own home to living in a long term care facility, or “nursing home”. There are many reasons why this transition is so difficult. One is the loss of a home...a home where we may have lived for many years and where our loved ones may still reside. Another is the loss of independence. Still another is the loss of the level of privacy we enjoy at home, since nursing home living is often shared with a roommate.
Most people who make the decision to move to a nursing home do so during a time of great stress. Some have been hospitalized after a stroke, some have fallen and broken a hip, still others have a progressive dementia like Alzheimer’s and can no longer be cared for in their own homes.
Whatever the reason, the spouse or relative who helps a person transition into a nursing home during a time of stress faces the immediate dilemma of how to find the right nursing home. This task is no small one, and a huge sigh of relief can be heard when the right home is found and the move is successfully accomplished. But the most difficult task may just be beginning: How do you make sure you get good care in a nursing home?
How to Get Good Care - Tips from an Elder Law Attorney
There will always be issues and problems with how care is delivered in a nursing home. No one is going to be able to take care of you or your loved one exactly the way you think it should be done. The question is how to deal with these inevitable problems. Nine times out of ten, a solution can be found if one is polite and persistent. Solutions come from people, not paperwork. Don’t assume a hostile attitude, it just makes matters worse. A worker who is treated with respect and kindness is more apt to treat you or your loved one the same way.
For the caregiver, the best way to help your loved one get good care in a nursing home is to make a transition yourself. It is time for you to move from the role of caregiver to the role of care advocate.
In this advocacy role, while you may continue to do a variety of things for your spouse or relative, your main job is to ensure that the nursing home staff provides good care. You cannot be at the nursing home 24 hours a day, so you want to know that the staff is caring for your loved one as it should.
The single best method to ensure that your loved one receives good care is to understand the care planning process and to become consistently involved in it. The care plan is a blueprint that outlines such things as physical and speech therapy, range-of-motion exercises, nutrition requirements, and other appropriate activities required for optimum functioning. This plan, which must be reviewed every three months (or more often if there is a major change in condition), works like this:
The Baseline Assessment.
During the first few days after admission to the nursing home, each resident undergoes a thorough assessment by the facility’s multi-disciplinary staff, a team that includes physicians, nurses, dietitians, physical or occupational therapists, recreation therapists and social workers. (The nursing home calls this assessment the MDS, which stands for Minimum Data Set.) Together this team gathers information from both the resident and the family about the medical and psycho-social (i.e. emotional/ lifestyle) needs of the resident. The team has two weeks to complete this assessment. At that time, a formal care plan must be put in place.
As care advocate, you should contribute the information you possess about your loved one’s medical, psychological, spiritual and social needs, as well as information the staff should know about your loved one’s preferences. For example, “Dad likes to watch the news and then read for a while each night. He also likes to have a snack of graham crackers and milk. This has been his routine for years and helps him relax before going to sleep.” This helps the staff get to know your Dad and allows him to maintain routines that are familiar and comforting.
The Care Plan.
The care plan is also written by the team. The purpose of the care plan is to spell out the areas in which care is needed by the resident and to spell out the manner in which the staff plans to address and meet these needs. For example, your Mother has suffered a stroke with resulting paralysis on one side of her body. She needs to learn to accomplish the independent activities of daily living, including hygiene needs and dressing herself, with the use of only one side of her body. The plan might be to work with physical and occupational therapy five times each week to recover independent functioning in these activities.
As care advocate, you will want to make a list of all problems and needs that affect your loved one. This is important because you may be aware of a need that the staff may not uncover during its assessment. Give this list to a nurse or social worker in the early days when the assessment is being done, then bring your list to the care planning meeting.
The Care Planning Meeting.
No later than three weeks after admission, the facility is required to have the first care planning meeting. You should receive written notice of the date and time. The staff who attends these meetings usually includes the Director of Nursing or the Assistant Director, often another staff nurse, a social worker, a dietitian, a physical or occupational therapist if appropriate, and a recreation or activities therapist. The staff will discuss the needs of the resident and the team’s specific plan to meet those needs. It is the job of the nursing home staff to maintain or improve functioning by your loved one, when improvement is possible, and to slow the loss of functioning, when improvement is not possible. For example, if your Father is able to walk independently when he goes to a nursing home, the staff must work hard to assure his continued ability to walk, barring some medical event that changes this ability.
As care advocate, attend the care planning meeting and bring the list of needs you compiled and gave to the staff during the assessment period. Also be sure your loved one attends the meeting if he or she is able to participate. Your role at this meeting is critical, because you are in a position to monitor whether all problems and needs are being addressed. If something has been missed, you or your loved one can add that information now so that a comprehensive care plan is put in place.
Care Plan Updates.
The nursing home is required to evaluate each resident’s care plan on a quarterly basis, or at any time there is a significant change in the resident’s status. For example, your Mother has been in the nursing home four months when she has a stroke that leaves her barely able to speak. This represents a significant change in her status and requires the staff to develop a new care plan to address her current needs. There should also be a care planning meeting to review the new plan.
As care advocate, you should attend all care planning meetings to be sure your loved one’s needs are being addressed. Throughout this on-going process, you should provide input that contributes to good care for your spouse or loved one. It is widely recognized that the residents who receive the best care in nursing homes are those whose spouse and/or families consistently attend care planning meetings and communicate with staff on a regular basis. The nursing home is obligated to try its best to provide individualized care that will achieve and maintain the highest level of well-being for your spouse or loved one. In your new role of care advocate, use the care planning forum to bring your questions to the table, to identify your loved one’s needs, and to work with the staff to formulate solutions to any problems that may arise.
This article has been adapted from The Pennsylvania Nursing Home Guide, which is available for free download on the website of the law firm of Marshall, Parker and Associates at http://www.paelderlaw.com/pdf/NH_Guide.pdf. The Guide covers many additional subjects including a section on how to pay for care.