Chapter 6: Planning Your Mother's Care

In the first 14 days after your mother enters the nursing home, the facility staff is required to assess her abilities and needs.  They are supposed to figure out what kind of care your mother needs to “attain or maintain” her “highest practicable physical, mental and psychosocial well-being.”  

Nursing homes are required to use a standardized care-planning process for all their residents.  This process has three steps: 

1. Her doctor and the staff assess your mother’s abilities and needs; 

2. Her doctor and the staff evaluates any special concerns raised by the results of the assessments, 

3. The staff, your mother and her representative create a care plan which describes how the staff will meet her care needs.

 

1.  Assessing your mother’s abilities and needs

While the staff may do fuller assessments, they are required to get at least the information required to complete a 33-page form called the Minimum Data Set.  Staff call it the “MDS.”  A blank copy of this form is here

You can see that the MDS has some technical language and small print, and is not easy to read.  Please don’t let the way the form looks intimidate you.  When you read it, you will see that most of the Minimum Data Set is information about your mother’s ability to hear, see, eat, walk by herself, and so forth, and what kind of help she needs (from tools such as hearing aids, glasses, or dentures, and from other people.)   It asks what she wants to be called,  how she likes to spend her time, when she prefers to wake up and go to bed..  It also has information about her recent medical history, including weight loss, falls, and signs of depression or confusion, and about her personal history and relationships with other people.  

Some of information in the Minimum Data Set is based on what the staff see as they take care of your mother during those first 14 days.  But much of the important information for the Minimum Data Set must come from you and your mother.  To complete the form, the staff will need to ask you or your mother questions about her personal and medical history.  Some of the questions on the Minimum Data Set ask about events that happened up to 6 months before your mother entered the nursing home. 

To complete the Minimum Data Set, the staff will do written assessments in the first 14 days after your mother moves in.  The assessments should be placed in your mother’s file as they are completed, and the Minimum Data Set filled in.  After 14 days, a complete copy of the Minimum Data Set should be in the file.  

Doing some of the assessments may require the staff to schedule tests or extended evaluations which may not be possible to complete within 14 days.  If your mother is incontinent, for example, she may need extensive testing to determine why, and whether her situation can be improved.  In this case, her care plan should include scheduling ongoing evaluations and deciding how to react – probably including meeting again – as the results become available.

Look for the Minimum Data Set in your mother’s records.  Read it.  If possible, go over it with your mother so you both make sure it is correct.  You can make a copy if you want and make notes on it.

The plan of your mother’s care will only be as good as the information on which it is based.  That the Minimum Data Set is filled out properly, makes it more likely that she will get the care she needs, with fewer misunderstandings and arguments about what she actually needs.  

If there are mistakes about your mother in the Minimum Data Set, speak to the Director of Nursing or the “care plan nurse” to make sure they are corrected.  Do this immediately.  Do not wait until the care plan conference. 

 

2.  Preparing for the meeting

If your mother has entered the nursing home expecting to go home after a relatively short period of intensive therapy, part of the care plan should be making arrangements for her to go home.  Even before the care plan conference, you should be able to arrange for the facility occupational therapist to visit your mother’s home and make suggestions about how to adapt it to make it safer or more usable.  The therapist can also evaluate what are the minimum physical skills your mother will need, in order to go home.  If your mother’s stay is being paid for by Medicare, Medicare will pay for the home evaluation if her doctor enters an order for the occupational therapist to do it.  

Although it depends on how much help she will have, many people cannot go home unless they have “transfer skills.”  Transfer skills are the ability to get from bed to wheelchair to commode or toilet without help.  If it is not possible to install a ramp in her home, your mother may need to be able to climb one or more steps of a certain height and depth.  If the bathroom at home is not large enough for a wheelchair, she may have to be able to walk a certain distance with a walker or cane.  Having this information will make it possible to set goals for therapy that reflect your mother’s priorities and wishes.

A few days before the care plan conference, meet with your mother, and with family members and friends who have been visiting, and are familiar with her situation.  At this meeting, you should make a written list of what issues you want addressed at the care plan conference.  These should include every good practice and activity that you want begun or continued, and every unsatisfactory practice or activity that you want changed.  Your list should include all the subjects addressed in the Minimum Data Set that matter to her.

Your list can include more than issues you might think are raised directly by the Minimum Data Set.  

By now you and your mother  will have an idea of how things are going for her.  If her nursing home stay is going the way it does for most people, there will be a few things that are going well: people who are kind and competent, who do what she needs when she needs it, or even know what to do before she asks.   There will be some things that are acceptable, if not great: staff that do their best, but don’t remember what she needs even when she asks every day, or don’t have the time even if they do.  And probably some things that are just awful.  That may mean food that is inedible, staff who are rude or mean or don’t know how to care for your mother safely, medications not being given properly, nothing interesting to do during the day.

The list you make should reflect what her experiences have been so far in the nursing home.

So the list could include that your mother wants to keep getting such services as having an aide bring her to activities or helping her put on make-up, that she get a special diet or be brought to the dining room for meals rather than eating in her room.  Or it can include services she is not getting: more frequent therapy, an evaluation by a geriatric psychiatrist for depression, help from an aide to practice walking,  eating five or six small meals a day rather than 3 big ones, or being dressed in shoes and socks rather than slippers.  

Do not worry about how an issue that is important to your mother fits into the Minimum Data Set.  There is no issue too small to bring up at the care plan conference, and nothing that does not “fit in.”.  If something that can be changed is making your mother unhappy or unhealthy, or putting her at risk for injury, it should be changed.  

If your mother prefers a particular aide, or is having an specially difficult time with another, the conference is also the time to discuss assigning, or reassigning, the aides who care for her.  If one aide has a special knack for dealing with your mother, the conference can be where you discuss having that aide show her fellow employees what she does.

Your list should also include the health care providers you want your mother to see during the next 3 months.  These might include a dentist, podiatrist, optometrist or ophthalmologist, hearing specialist, and gynecologist.  (Although nursing homes are required to arrange for gynecological care for women “of child-bearing age,” they often do not do this.)  Older women almost never get routine gynecological care unless the resident or family requests it.  No matter how basic – a PAP smear, a dental check-up – assume your mother will get no professional medical care other than nursing care and care from her regular doctor unless you ask for it. 

You can give a copy of your list to the care plan nurse.  Explain that these are the issues you want discussed at the care plan conference, and you want the staff to be prepared to discuss them.