I’ve spent years in nursing homes and assisted living sites both as a daughter of parents who’ve lived their final years in such places and as a expressive arts therapist who has provided services to the residents.
Most recently I just 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 come to observe the quality of relationships between staff and 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 may 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 one’s needs, yet the level of care both in frequency of interactions and actual caring attitudes can vary greatly. Each facility has its’ own pace, rhythm, workplace ethos, staffing issues and available resources.
So 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 here—the PR 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. Any change should entail an explanation that you are told. You can also observe appetite, cleanliness of room and person, foul smells, and any bruises or scratches on person’s skin.
The person you are visiting may have their own complaints. Many times this has to do with waiting for assistance. A person may say that in the middle of the night when he had to use the bathroom, he rang the buzzer but it took the nurse twenty minutes to come. To assess the veracity of this is tricky. For a person with urgent needs, even a five minute wait may seem like forever. Other times they may truly be forgotten.
It is always good to make a note of what they tell you and to report it to the RN that is head of the hall or unit. This person is in charge of the Geriatric Nursing Assistants who attend to bathroom and other Activities of Daily Living (ADL) needs.
You, of course, 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 and they either agree with you and promise to do better or become defensive.
The truth, which admittedly, is hard to digest, is that no senior care facility will meet all of your expectations or every single 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 some still suffer similar disappointments. There is a mandatory care plan meeting for nursing home residents every 90 days at which family is expected to attend. The general plan of care by each provider is outlined here. Any deviation in practice 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 yet each facility may handle their planning differently. Grievances can go from the most gross abuse to what I call ‘benign neglect’. This may not qualify as a legal grievance, yet as experienced by the patient and family member may be a noted lapse in care.
It is important to prioritize and pick what is most essential to focus on. Grasping this gets to the root of the experience of having a loved one in a nursing home or assisted living facility. While attending to physical caregiving issues is, of course, of essential 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 allow for feelings, present and past, and a spiritual encounter. Think about it—you come and go in your own life. Stopping at the nursing home is part of your day. Yet for the person, this place, this environment is the sum 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? This certainly could be. At the same time, the great gift from this is to focus on the here and now. It is the quality of a person’s existence that reigns supreme here. A nurse’s aid who delivers a person’s dinner with a smile, a joke, a friendly touch on the hand can make more difference in the patient’s day than having some medicinal procedures.
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 down 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 there gets enough caring touch. While some families are more demonstrative than others, you may not have seen your loved one as needy as they are now, and 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. To focus a person’s attention outside of themselves allows for greater positive energy. Bringing in a flower to touch and appreciate the color or going to a window and both gazing at the trees and sky or having soft or cuddly objects to touch or humming or singing a person’s favorite song can be sources of great comfort and connection to the person.
Some visitors are worried about looking silly or infantilizing the person. 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 some different things, no harm done.
While it may be helpful to bring in pictures of family or talk about past situations, sometimes this may be disturbing if the person realizes they 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 them and help create a context where they feel cared for. Any agenda to discuss certain topics or complete a project can feel like undue pressure and is frustrating.
Obviously much of the quality of the visit depends on the prior quality of the relationship you had with this person. If family relations are strained or if there is unfinished business between you two and if resentments are still held, visiting can feel aversive, and many times relatives stay away. Difficult as it seems, this challenge may be an opportunity not to completely work through old grudges, but rather to find a way to put them to the side and allow for the time and space just to 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 assure that bitterness is not all you’ll remember when the person eventually dies. I have found comfort and understanding in reading some of the Psalms which offer a path through hard emotions while holding onto faith.
And as the person continues through the stage of aging and weakening, you may witness them becoming a different person, possible more yielding, and your feelings towards them may soften. This is a journey you take together. As much as you may want to be there for them, you, also, can have your innermost sensitive feelings touched.
How often is it good to visit? I have witnessed spouses and children who come every day, sometimes all day. While this certainly demonstrates devotion, it is important that the visiting person also keep up the quality of her life and contacts outside of the facility. Eventually the resident will be gone, and the person will need a life to fall back into.
Other people come once or several times a week. As the resident is usually there waiting for you, it is good to have some type of set schedule they can depend upon, like every Wednesday after breakfast, or every Friday before the Welcome Shabbos program.
Visiting a person with dementia has its’ own necessary approach, and I would be glad to discuss this with anyone. What’s most important in your relationship with someone in a senior care facility 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.
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