As adults, we all hope to age in place and exit the world as gracefully and painlessly as possible. As children, we all vow to care for our parents lovingly in our own homes as they weaken and lose their independence. Unfortunately, these beautiful scenarios are not always possible. Medical realities, insurance considerations, and family dynamics often preclude being able to fulfill these dreams. Indeed, the current norm is that about one in ten older people will spend their ebbing time in a nursing home.
I’ve spent years in nursing homes and assisted living sites, both as a daughter of parents who have lived in such places and as an expressive arts therapist providing services to the residents. Most recently, I completed three-and-a-half years at Levindale Geriatric Center as a dance/movement therapist: facilitating groups and doing individual bedside visits. Given this background, I have observed the quality of relationships among staff, patients, and family members. Kindly allow me to comment on my experiences and to make some suggestions for improving interactions.
It is important to understand how senior care institutions are set up. While they purport to offer a home-like atmosphere – and some do this better than others – the reality is that it is not the same as being in one’s home. Programs and services are created to ostensibly meet the resident’s needs, yet the level of care – both the frequency of interactions and the compassionate attitude – can vary greatly. Each place has its own pace, rhythm, workplace ethos, staffing issues, and available resources.
Once a loved one has been moved to such a facility, it is important that family members try to understand the new environment. There are at least three perspectives to reckon with: the public relations description the facility puts forth, your own response to what you see and hear, and the experience of the resident.
One fact is indisputable: Every resident of a senior care facility needs an advocate. At the very least, this person should check to see that the resident’s daily care needs are provided. You can tell a lot by observing the resident’s mood and behavior. If there is any change, it should be explained to you. You can also observe appetite, cleanliness of the room and person, foul smells, and any bruises or scratches on the patient’s skin.
The person you are visiting may have their own complaints. They often have to do with waiting for assistance: For instance, when he/she rang the buzzer in the middle of the night to use the bathroom, it took the nurse 20 minutes to come. To assess the veracity of this is tricky. If the need is urgent, even a five-minute wait may seem like forever. Other times the person may truly be forgotten.
It is always good to make a note of what they tell you and report it to the RN who is head of the hall or unit. This person is in charge of the geriatric nursing assistants, GNAs, who attend to bathroom and other activities of daily living (ADL) needs.
You want to do right by your loved one. At the same time, you want to be cautious about setting up a contentious relationship with staff, where every time you walk in, you register a complaint. Aim to maximize the times they agree with you and promise to do better rather than becoming defensive. Complimenting them for correct behavior is effective here.
The truth, admittedly hard to digest, is that no senior care facility will meet all your expectations or every one of the resident’s needs. Again, this is not the same as home; this is not one-to-one care, unless a person hires an additional, paid caregiver beyond the regular staff. Some people with extra resources are able to do this, and even they may suffer similar disappointments.
For nursing home residents, there is a mandatory care plan meeting every 90 days, which the family is expected to attend. The general plan of care by each provider is outlined here. Any deviation from this plan may constitute a grievance that can be reported to the state. Assisted living sites are not held to the same structure of mandatory meetings, and each facility may handle its planning differently. Grievances can comprise anything from gross abuse to what I call “benign neglect.” This may not qualify as a legal grievance, yet it is experienced as a lapse in care by the patient and family member.
It is important to prioritize what is most essential to focus on. Grasping this gets to the root of having a loved one in a nursing home or assisted living facility. Although attending to physical care is of crucial importance, what will probably make the most difference in the mind, attitude, and feeling state of the person you are visiting is the direct quality of your interaction with him or her.
It is often easier to focus on external behavior than it is to have a spiritual encounter or to allow for feelings, present and past, to be expressed. Think about it: Stopping at the nursing home is just part of your day, yet for the patient, this environment is the total reach of their existence. Even in the best places, there is a sense that this is the end of the line. The thought that life will unfold in new or exciting ways is minimized.
Depressing? It certainly could be. At the same time, the great gift of this reality is to emphasize the here and now. It is the quality of a person’s existence that reigns supreme here. A nurse’s aid who delivers dinner with a smile, a joke, a friendly touch on the hand can make more difference in the patient’s day than having some medical procedure.
When you come to visit, slow down, take a breath, pick up on the pace and rhythm your person is experiencing and join with that. Quiet the environment so you can take in more of one another. Turn off the TV or go to a quiet corner.
Touch is a matter of personal preference, but I guarantee that no one in these facilities gets enough caring touch. While some families are more demonstrative than others, your loved one may never have been as needy as he/she is now, while still being inhibited about expressing that need. Lightly massaging a person’s feet is a start, unless there is some medical reason not to. Holding and stroking a hand may feel good to some. Sometimes, just sitting close and punctuating the conversation with occasional pats may answer the need for soothing and connection.
Anything one can do that pleasantly stimulates the senses is a plus. Directing a person’s attention outside of him or her self allows for greater positive energy. Bringing in a colorful flower to touch and appreciate or gazing through a window together at the trees and sky, or bringing cuddly objects to touch or singing a person’s favorite song can all be sources of great comfort and connection to the person.
Some visitors are worried about looking silly or infantilizing the one visited. There is a line between being caring and tender and treating a person like a child. You will only know how to approach the resident by trying out different things, no harm done.
While it may be helpful to bring in pictures of family or talk about past situations, this can be disturbing if the person realizes he/she can no longer participate in such events. It is best to have pictures, props, and other resources available yet to allow your loved one to take the lead. Your goal is to support the person and create a context where he/she feels cared for. Any agenda to discuss certain topics or complete a project can feel like undue pressure.
Obviously, much of the quality of the visit depends on the prior quality of the relationship. If family relations are strained or there is unfinished business or resentments between you, visiting can feel aversive, and relatives often stay away. Difficult as it seems, this challenge may be an opportunity – not to completely work through old grudges but to find a way to put them to the side and allow the time and space to just be together, focusing on the sensory experience in the moment with no judgment. This is a gift you can give the other person and yourself and may ensure that bitterness is not all you’ll remember when the person eventually dies. I have found comfort and understanding in reading from the book of Psalms which offers a path through hard emotions while holding onto faith.
As the person ages and weakens, you may witness him/her become more yielding, and your feelings also may soften. This is a journey you take together. Although your original goal is to be there for your parent or spouse, you may find your own innermost sensitive feelings touched. (Visiting a person with dementia has its own necessary approach, and I would be glad to discuss this with anyone.)
How often to visit? I have witnessed spouses and children who come every day, sometimes all day. While this certainly demonstrates devotion, it is important that close relatives keep up the quality of their own life. Eventually, the resident will be gone, and one needs a life to fall back into.
Others decide to come once or several times a week. As the resident is usually there waiting for you, it is good to have a set schedule they can depend on, like every Wednesday after breakfast, or every Friday before the Welcome Shabbos program.
What’s most important is to create a sense of connection and caring that will fill you both with an essence of meaning and sharing as life progresses.
Joyce Wolpert is a Licensed Counselor and Expressive Arts Therapist. She advocates for the quality of life for seniors both in and out of facilities. Her latest project, “Come to Your Senses,” offers creative solutions for care giving. Contact her at jbdance8@yahoo.com or 410-358-0977.
