Chapter 4: Making the Most of Visits

1.  Visiting may be the most important thing you can do for your mother.  

Having visitors who care about her and are happy to see her is the most obvious way your mother can be assured that she is still an important part of the world.  If possible, you should not be the only person visiting regularly.  If friends or relatives say that they "wish there was something they could do" for you or your mother, tell them that there is: they can visit her.  This does not have to mean every week.  If somebody can visit one evening every two weeks, or even once a month, this is one less visit you may feel you have to make, or feel guilty about not making.  The important thing is that, whenever possible, everybody is on a schedule that makes them responsible for visiting at specific times.  People are more likely to show up, if they have a specific day on which to visit, than if they say they will visit "sometime."

Sometimes staff will tell family members that they are visiting “too much” or “too often.”  We have only known this to happen when there is already some friction between the staff and the family.  Discouraging family from visiting almost always is a way to make life easier for the staff, not better for your mother.   

Think about it.  Your mother is more frail and vulnerable than she has ever been in her adult life, living among strangers, and dependent on strangers to meet her most basic needs.  Does it make sense to isolate her any more than necessary from her family and friends?  

In general, the more time your mother can spend with family and friends, the better for her.  It does make sense not to visit during times your mother is participating in activities she enjoys doing on her own, or should be encouraged to do on her own to renew her sense of independence.  You should encourage her to develop friendships with staff and other residents.  You should not interrupt conversations she is having with staff or residents, or keep her up and talking when she should be sleeping.  And you need to keep enough of your own life to remain physically and mentally well.  With these exceptions, the more time she can be with her family and friends, the better for her.  

Remember: bring your notebook whenever you visit.


2.  When can you visit.

If the nursing home is in the Medicare or Medicaid programs (even if Medicare or Medicaid is not paying for her nursing home care,) the nursing home must let you or other visitors see your mother any time she wants, so long as the visit does not bother other residents.  If you are your mother’s health-care decision-maker, you are considered to be speaking with the resident’s voice when you say you want to visit.  You should be able to visit any time, even if your mother is unable to say she wants to see you.  

If the nursing home is not in the Medicare or Medicaid programs, the nursing home must let you visit at least between 10 a.m. and 8 p.m.  


3.  One person in your family can be in charge of coordinating visitors.  

Make a schedule of who is going to visit when.  Try to have people visiting at different times on different days, so you have a sense of what is going on with your mother throughout the day and the week.  Too many visitors at one time can be confusing and overwhelming.  


4.  Talking to your mother’s visitors after each visit is the only way to know what they have seen. 

The person coordinating visits should talk to visitors after each visit.  This does not have to be you: sharing responsibilities among relatives and friends makes it less likely that you will feel overwhelmed by all your responsibilities.  Make it an automatic part of the routine that either they call, or someone calls them.  E-mail might work, but many people don’t say as much in an e-mail as they do when speaking,  If you are concerned about a particular issue - how a staff member is treating her,  if she is being dressed in shoes rather than slippers, if she is being kept clean and dry, or anything else - ask her visitors to check on your particular concerns.

Write down what her visitors tell you in your notebook.


5.  Take advantage of the fact that other residents have visitors, too.  

Network.  Introduce yourself to people you see visiting other residents.  Exchange names, phone numbers, and e-mail addresses, and offer to trade services: you will check on their mother, and spend some time with her, when you are visiting, and they will do the same for your mother when making their regular visits.  As with other visitors, arrange to call each other after each visit.

For both residents to get the maximum possible benefit from these "visiting exchanges," you want other people to visit when you cannot.  To meet people who regularly visit when you are not there, you may have to make a special effort to visit on a day or at a time when you normally do not go.  If you usually visit in the evening, you will not meet people who visit in the morning unless you come at least once in the morning; if you visit on Tuesdays and Saturdays, you will not meet people who visit on Wednesdays unless you come at least once on Wednesday.


6.  Read the nurses’ notes for your mother whenever you visit.

If your mother is competent, or your are not her health care decision-maker, you will need an authorization such as we describe in Chapter 1,  to be allowed to read her records   If the staff keep a “behavioral log,” be sure to see this, as well as any doctor’s orders.  Ask her nurse about anything in the records that concerns you. Take the time to talk to your mother’s CNA about how your mother is doing, including any changes the CNA has observed in your mother’s condition.  Ask her if there is anything your mother needs or could use.  

If you are your mother’s health-care decision-maker, or your mother has given you written permission, you may copy any of her records.  The nursing home may charge you no more than the usual per-page charge at the local public library or other non-profit institution.  It may not charge you a fee for time or labor.  If they do not let you make the copy yourself when you ask for it, nursing homes in the Medicare or Medicaid programs must give you copies of records no more than 2 days after you ask for them, even if Medicare or Medicaid is not paying for your mother’s care.


7.  Make a habit of checking to see if there have been any new “surveys” — that is, inspections — of the nursing home by any government agency, and what were the results of the survey

Chapter 13 has more information about surveys, and related information about nursing home inspections.


8.  Check for skin breakdown.

If your mother has diabetes, if she has lost feeling in her hands and feet, or if she is not able to move easily, she is at risk of developing pressure sores (also called bedsores, pressure ulcers, and decubitus ulcers).  When you visit, it is a good idea to make sure that she does not have any new skin breakdown, or deterioration in old pressure sores, and that she is actually receiving any treatment the doctor has ordered.  You can check her skin when your mother is receiving skin care, including when she is being cleaned after soiling herself.  If she is diabetic, you should check her feet for any injury every time you visit.  This is because many people with diabetes lose feeling in their hands and feet, and so may not realize that they have been bruised or cut.

You can check your mother’s skin condition if your mother is competent and consents, if you are her health-care decision-maker, or if you have permission from her health-care decision maker.  The facility staff, and probably your mother, will be more comfortable with someone of the same sex checking her skin on her chest and pelvic area, so you may need to ask another relative to do this, or ask that a staff member be present when your mother is undressed.


9.  If your mother can eat at all, bring in food she likes.


10. Do something together.

Your mother may enjoy your visits more if you both have something to do.  She may enjoy helping you get a snack or a home-cooked meal ready to microwave.  You can help her do range-of-motion exercises.  You can look at photo albums, or new pictures of the grandchildren on your phone.  If you can get internet reception in her room, you can visit museums, watch movies, catch up on news, go to family pages on Facebook.  You can read aloud.  You can help her write a letter or make a card for a grandchild.  You can do her nails, or put lotion or cream on her skin.  (Do not massage your mother if she is at high risk for developing pressure sores: massage increases her risk of skin breakdown.


11.  Try to get her outside.

Many nursing home residents live like vampires: they spend their entire lives inside, and never get out in the sunlight.  If your mother is able, getting her to community activities and going out for a meal is ideal.  Go to church.  Go to a movie.  Go shopping.  

If she cannot manage a trip, at least get her outside to the patio when the weather permits.   


12.  Talk.  Encourage her to talk.  

If she can tell you, of course you want to know how things are going: what has she done since you last talked, how is the therapy going, has she met any residents or staff she likes.  Some people want to only talk about their current situation.

But often people will want to remember that their lives are made up of more than being a “nursing home resident.”  So if her memory is not too impaired, find things your mother can do to help you.  Ask her to give you recipes or cooking tips.  Ask her the meaning of words in her native language.  Get her talking about when she was younger: how you and your siblings got your names, how she met your father, what she did during World War II, how your parents chose the neighborhood you grew up in, the music she liked to dance to, why you really were her favorite child.  Bring in gifts you need to wrap, or pictures to put in albums.  Help her help you as much as necessary without frustrating her.

Your mother may want to talk about subjects that you find difficult or frightening.  Entering a nursing home forces many people to reconsider their beliefs about the meaning of life and death and dying.  Your mother may need reassurance that she has led a worthwhile and meaningful life.  This kind of reassurance may be the most important help you, your family and friends can give her. 

Your mother may want to talk over funeral plans.  This is not necessarily being morbid, or evidence of depression.  She may need a sense of closure, or to be reassured that any ceremony and burial will be what she considers appropriate.


13.  Bring recorded music.

The idea is to bring music she likes, not what you like.  So find that Frank Sinatra recording.  Nat King Cole.  Hank Williams.  Elvis.  Probably not N.W.A.


14.  Sing songs.   

Try singing or playing songs you know your mother likes, or would have know and sung as a child and young woman.  Try hymns.  Encourage her to join in.  Remarkably, some people with dementia who can no longer speak, are still able to sing songs they learned when they were young.


15.  Bring the family pet.

Nursing home staff are getting more used to the idea of bringing animals into the building.  Some nursing homes have pets living in them; others have visits from volunteers who do “pet therapy.”.  Most residents get great pleasure from seeing and petting a friendly furball.  The Illinois Department of Public Health has no problem with this.  

So if you think your mother might enjoy a visit from the family dog or cat that has had all its shots, bring it along.  Check with the administrator to see if you can bring an animal on a leash onto your mother’s floor.  There should be no problem bringing an animal in a cage or carrier into your mother’s room, and then letting it free, so long as having an animal in the room is all right with her roommate.  

If you are not allowed to bring a leashed animal onto her floor, you should be able to bring it to the lobby or a first floor meeting room.  Probably you will find yourself – actually, Fido will find himself – the social hit of the neighborhood.  Residents will want you to bring him back whenever you come, and you will have your identity forever established as Fido’s mom. 


16.  If your mother does have memory loss, remind her other visitors of some of the basics about communicating with her.

These include speaking slowly, making eye contact, speaking quietly and eliminating distractions such as the TV.  Explain that instead of correcting factual mistakes she makes (such as her age, where she is, what she is doing there, or who the visitor is) it is better to agree whenever possible and take the conversation wherever it goes.  If your mother wants to do something that is not possible, try to distract her with another activity instead of refusing.  If she wants to walk, walk with her.

Remind her visitors not to ask her “Do you remember” as they discuss people, places, and past events.  Instead, explain that they should start discussing or describing a subject, and give your mother a chance to join in if she can.  For example, avoid: “Do you remember Susie?   Do you remember when we all went on vacation together?”  Be realistic: even people who do not have dementia do not remember everyone they ever met.  Try “I was thinking about cousin Susie, Mary’s daughter, the one with the bright red hair.  That time we all went on vacation and she got gum in her pigtails.”  If she remembers, fine.  If not, tell her the story, and remind her of the fun she had. 


17.  Sit quietly and hold your mother’s hand. 


18.  Tell your mother you love her.