“My sister who lives out of state says I should visit Mom every day,” Darcy lamented, “but I’m the only one who took care of her for six long years. The stress is jeopardizing my marriage. Now my husband says I need to cut back for my own health. My sister may say I’m letting our mother down, but half the time Mom won’t know I’ve been here anyway. So who is the visit really for?”
Families frequently ask how often they should visit. It is important to go with your intuition and feel comfortable with your decision. In Darcy’s case, I suggested she start by visiting three times a week. As long as she felt comfortable being away for a couple of days, it would help her mother and the staff get to know one another. Dementia residents feel safe within a highly structured environment. The sooner they adjust to a routine, the sooner feelings of comfort and security can take root. Darcy did take a few well-deserved days off, and to her relief, her mother never realized she had been gone.
An alert resident, on the other hand, may benefit from frequent visits during the first weeks. Cheryl sat in my office on the day of her mother’s admission. “My sister Becky and I spent the night at Mom’s house,” she told me. “We thought it would help stabilize the emotions we were all feeling. This morning we all laughed and cried as we got ready. In Mom’s new room, Becky arranged the clothes and toiletries, while I worked with the movers who were delivering the bedroom furniture. By the time the room had been personalized with her things, Mom had joined a group of ladies for lunch. Everything went along pleasantly, but as we prepared to leave, Mom pleaded, ‘Girls, don’t leave. I’m not ready to say good-bye.’”
During the first days following admission, the alert resident will need the security of knowing that she has not been deserted and that you will continue to be actively involved in her life. The routine established by the facility will be enhanced by the structure you give with your calls and visits.
The More You Visit, the Easier It Gets
Quality nursing homes always welcome visitors. Initially, family members may be intimidated by the new environment. Adult children of dementia patients may fear the disappointment of not being recognized by their parent. Seeing your mom out of her usual setting can be disorienting. Suddenly, she looks older, more frail. Lost in a sea of white-haired ladies, she looks like one of “them” and not like “Mom.”
“How can I relate to her now?” a woman once asked me. The answer: Visit regularly. The more you visit, the more comfortable you will be with your parent, the facility, and the staff members.
Be prepared to experience different kinds of visits. There will be happy, meaningful visits, along with sad, possibly disturbing ones, but each visit will help continue the family bond and reassure your parent that he is loved. If at times you truly have no desire to visit, go with your feelings. Visiting out of a sense of duty will only make you feel pressured and guilty. When you are under stress, your parent is likely to sense it. Wait until you are in the right frame of mind.
Visiting is a commitment. Give a date and time only if you feel able to keep the appointment. Alert residents look forward to visits, so if you must cancel, call at the earliest convenience. What is common courtesy becomes imperative when a nursing home resident is looking forward to company.
Respect Your Parent’s New Routine
Because of different work and home responsibilities, available visiting time will vary from family to family. However, it is necessary to remember that your parent will also have routines and schedules that are an important part of his day; for example, an exercise class involves socialization with other residents. If you can visit when your parent is in his room between activities and meals, the quiet, personal visit will truly add to his day. Obtain a copy of the activity schedule and consult with staff members about the best hours to visit.
Check in with the Staff
Upon entering the facility, let the staff at the nurses’ station know who you are and whom you are visiting. Ask if there are any changes you should know about. If you know in advance that your father was participating in activities all day or that he worked with a physical therapist, for example, you won’t be alarmed if he seems tired.
The more the staff gets to know you, the better it is for your parent. If you treat your parent and the staff with respect and thoughtfulness, your parent will become highly visible on the staff radar. Research confirms that residents who have more visitors have a more positive nursing home experience than those who have fewer visitors.
Schedule Different Times for Large Families
If you have a large family, schedule visits at different times of the day or week. Even two visitors at a time can be overwhelming to those who are hard of hearing or have dementia. Too often, family members do not speak directly to the parent but rather chat among themselves. Come to spend time talking with your parent, not to visit the rest of your family. Such gatherings frequently result in everyone having a good time except the parent.
Lower Your Voice
Many visitors think that the louder they talk, the better the elderly resident will hear. In fact, dropping your voice to a lower tone and speaking slowly is far more effective. Choose a quiet area to visit, moving away from background noise.
Brief Visits Can Be Successful
If your parent is alert, she may try to be a good host by keeping a conversation meaningful and interesting, but this can be tiring. Keeping your visit short—ten to twenty minutes—will take the pressure off both of you. If your parent has dementia, just a few minutes of holding her hand will let her know she is accepted and loved.
Photo Albums Are Almost Always a Hit
The photo album reminds the alert parent of her ongoing connection to the family. For the cognitively impaired resident, who is likely to be more comfortable in the past, the album is a pleasant reminder of past relationships and occasions. Large, clear family photographs are best. Some families bring in videotapes or DVDs of grandchildren talking and singing.
Children Are Always Welcome
Bringing children to a facility is a win/win situation since all residents and staff benefit from the smiles and laughter of little ones. Your parent can play simple games like cards or dice with your children without worrying about following the rules. Families can also bring in drawings and pictures of grandchildren to place on the walls and closet doors to brighten up their parents’ rooms. It is beneficial to let your children see that a close relationship with Grandma is important. My mother once remarked as my son and I were concluding a visit, “The way you take care of me is a wonderful lesson for Christopher.” Take the time to demonstrate that, just like everyone, the elderly need attention and affection.
Treats Are Wonderful
Special foods such as chocolate croissants or perhaps lox and bagels will be a welcome change from your parent’s usual diet. Make it something that has always been her favorite. If your parent is on dietary restrictions, request that the registered dietician or doctor assess the diet to allow a treat as often as possible.
When you bring candies, cookies, or fruit, place them in an airtight container because sweets can attract insects. Even quality facilities must work diligently to keep rooms free of ants and other undesirable visitors. For residents who are cognitively impaired, leave treats with the charge nurse or the administration office to be distributed at intervals; otherwise, the treats may be eaten all in one sitting or forgotten altogether.
Make Sure a Car Trip Will Be Worthwhile
If you plan an outing, be sure your parent feels up to it or you may discover early in the trip he is already too exhausted to enjoy himself. Avoid crowded places that can overstimulate your parent. If he is unable to leave the facility, wheel him around the grounds. This activity not only stimulates conversation, it also provides you with an opportunity to observe the care of other patients and get to know the staff better.
Sing!
Walking along the corridor, I often heard singing coming from Room 103. Sarah had been visiting her ninety-four-year-old mother at the nursing home for three years. An only child who never married, Sarah was very devoted to her mother. At first, Sarah had visited once or twice a day, but over the years as the dementia progressed, she had changed her routine to twice a week. “Who thought this is what awaited us?” Sarah shared with me during one of her visits. “Conversation is next to impossible now, but Mom and I have found a different way to communicate—we sit and sing together. While many memories are gone, the songs we love from long ago somehow remain.”
According to a study of the effect of music on dementia patients, singing is a valuable source of stimulation—a method of communication that reduces agitation, promotes engagement in activities, and encourages interaction with other people.
“All Dad Does Is Complain”
If your parent targets you with complaints every time you visit, you may feel unappreciated and leave with the impression that your visit accomplished nothing. However, do not withdraw. Sometimes complaining is just a step in the adjustment process during which the resident must feel free to control his environment. It can be a coping technique to verbally express sadness or loneliness. Other causes for nonstop complaining are:
Even though generally satisfied with a facility and the care their parent is receiving, adult children can find a stream of complaints emotionally overwhelming. Initially, they can be fearful that they have done the wrong thing “abandoning” their parent to “this place.” I once asked a resident why she found so much to complain about and what we could do to make things better for her. Without blinking, she answered, “I don’t have anything to talk about, so I complain.” If your parent complains constantly, always listen. Allow your parent to vent feelings, but set a limit to the complaint time, and then tactfully change the subject. Suggest taking a walk, or ask your parent’s advice on a subject about which he is particularly knowledgeable.
To all appearances, Evelyn’s admission went smoothly. It was only when her family visited that we found out “nothing was right.” The staff observed one type of behavior, the family observed another. At eighty-nine, Evelyn had just left her home of sixty years. During her first week in assisted living, Evelyn ate a balanced diet, attended activities, and took daily walks. She told the staff, “I miss my home, but everyone here is so nice.” However, when her daughter Norma came to visit, the food was too salty, the bed too hard, and there was nothing to do. The staff had heard none of these remarks. “Help!” begged Norma.
In such cases, we listen closely to the family and investigate each of their concerns to reassure them that our primary concern is their parent’s care and comfort. If your parent says “absolutely everything is wrong” the first few weeks, she is probably still adjusting. If the complaining continues after meaningful attempts have been made to alleviate concerns, it may be an attention-getting device or a fear of being abandoned. It may also be a method of “controlling” adult children and may have nothing whatever to do with the staff or the care being given. Once the underlying cause of complaining is understood, the adult children will have the security of knowing that the complaints and concerns have been addressed.
If you hear a complaint, before you rush to the nurses’ station tense and ready for battle, stop and think: Are you dealing with a minor issue or is this a real problem? Are you angry that you had no choice but long-term-care placement? Could you be taking your frustration out on the staff? Consider that you, too, are going through an adjustment process. Think with as clear a head as possible and then communicate the problem to the staff. I am not suggesting that you placate the staff. However, befriending the staff, teaching them who your parent is, and acknowledging their input creates the best scenario. A relationship like this takes time to establish. Remember, they are giving your parent the care that you are no longer able to give. Think of them as part of your team, not as an adversary that must be micromanaged.
Herbert and Margaret. After visiting his eighty-six-year-old mother, Margaret, Herbert dropped by my office. Clearly concerned, he said, “Mom claims your staff pushed her around and tried to drown her yesterday.”
When we investigated the problem, the nurse’s aide, Naomi, explained that Margaret was incontinent of bowel and bladder and had urgently needed a shower. In second stage dementia, she resisted being changed and bathed. “I did speak to her firmly,” said Naomi, “but I had no choice—she needed a bath head to toe.” After thirty minutes, Naomi was finally able to coax Margaret into the shower, but the disagreeable episode made Margaret think Naomi was trying to drown her. If Herbert had not explored the complaint, he would have left feeling ineffective, anxious, and probably angry.
When you attempt to decipher exactly what brought about a complaint, consider that your parent’s perception of the event may not be entirely accurate (although I have found there is usually an element of fact in each complaint). If the same complaint is frequent and consistent, share this with the director of nurses. She will want to look into it for your benefit and hers. If you feel a legitimate complaint is not being resolved, take your concern to the administrator. Ignoring it will damage your parent’s morale and leave you feeling powerless.
Give It Time
Residents adjust to their new environment at their own rate. Our best allies are time and patience. If things aren’t going well from your parent’s point of view, but you feel comfortable with the staff and the environment, step back, try to be objective, and allow for an adjustment period. (If roommates don’t get along, talk to the nursing staff about options.) Some residents slip into the daily routine from the moment they arrive. In my experience, however, the average resident takes about three months to feel secure and satisfied in the new home. If in that time your parent does not feel settled, give it three more months. Meanwhile, work with the staff to eliminate obstacles to your parent’s comfort and well-being.
Visiting Your Cognitively Impaired Parent
Visiting a cognitively impaired parent can be sad and frustrating. Remember, the Alzheimer’s patient is always right. Correcting inaccurate information may anger or embarrass her, and it will certainly exhaust you. Try to listen without reinforcing inaccurate perceptions. As your parent repeats the same story again and again, gently redirect the conversation.
Dee and Fran. The two women had just finished visiting their mothers and were sitting on the patio with me. “It’s been a down day for Mom,” said Dee. “Just two days ago, we had a lovely visit, but today all she did was ask me the same questions over and over again.”
“Dee,” I responded, “whether your visit has been meaningful or disheartening, it will have long-term value to you and your mom. The important thing is that you are here for her.”
“I wish my mom could speak at all,” said Fran, whose mother was in late stage two dementia. “When I visit, I just have a one-sided conversation. I’ve made peace with myself that I’ve lost her, but whenever I visit, I feel the loss all over again. I don’t know why I visit since she doesn’t even know I’m here.”
“Visiting your mother is always important,” I stressed to both of them. “It reminds everyone on the staff ‘this is my mother and she is important to me,’ so give yourself credit for being her advocate. Even if the visit feels meaningless to you, the comforting presence of another person is still important to your mother.”
Unexpected Relationships Develop
Families who visit frequently develop relationships with other residents and other families. Two daughters of patients in our nursing home became friends and travel companions. A gentleman who visited his aunt met a woman who visited her mother, and a lovely relationship grew that continued long after the death of the two residents. A dentist visiting his father ended up with new clients. This is a natural result of participating in a warm, caring community.
As time goes on, you may find yourself visiting more with the staff or other residents than with your cognitively impaired parent. This is not uncommon. John used to visit his father for ten to fifteen minutes, holding his hand. Then he would come back to the office and visit with the staff, showing them pictures of the grandchildren. After a while, he would go back to see his father for a short while and then say good-bye. John was fulfilling his goal of family involvement with his father and remaining a solid part of the caregiving team.
“Mom Doesn’t Want Me to Leave”
At times, concluding a visit may be difficult. Tell your parent up front how long you plan to stay. During your visit, be sure to convey by your words and actions that she is loved, important, and worthwhile. If you plan your departure to coincide with lunch or your mother’s visit to the beauty shop, the activity will work as a distraction so that you are not leaving your parent “alone.” Because the staff will come to know your parent’s preferences, they may be able to give you ideas, such as, “Leave just before the current events class; your mother really enjoys that.” If your parent pressures you to stay, acknowledge that parting is difficult for you, too, and remind her what you need to do: “Mom, it’s time for me to pick up the kids.” Tell her you love her, state when you will be back, and say good-bye.
Share What You’ve Learned with the Staff
At the end of your visit, check in again with the staff to share any information you may have gathered. Be sure to tell them if you left your parent in an anxious mood or if you observed the beginning symptoms of a cold. The staff sees your parent many times a day, but not for prolonged, one-on-one visits. We have halted many illnesses before they grew worse because of the sharp eyes of our families.
While sharing information with the staff, thank them for their care and concern. Ask their opinion on treats to bring or good times to visit. The staff will feel valued, included, and respected. Finally, have a good attitude about your visit—you want your parent and the staff to be glad you came.