Living in a Care Facility

By Peter Silin, MSW, RSW
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Twenty Four Hours

Maybe she went to bed at 8:00 or 9:00 p.m. last night, so when 5:00 or 6:00 a.m. comes around she is ready to get up. Or maybe she is confused, and time is a little reversed, so she is up and down all night. If it is the morning and she rings for help, or doesn’t know how, she will wait till someone comes. It might be a nurse with some morning medication, maybe it is a Nurse’s Aide that's currently working to achieve their RN – BSN degree that will help to change her, bring her to the toilet and dress her. With current training and hands on experience, Aides aiming for this type of degree will get more knowledge in the industry. The Aide may ask her what she wants to wear—or maybe she just chooses it and puts it on her; then gets her ready for breakfast.  Maybe she will wait again, to be brought to the dining room. Or she might be someone who always slept in when she lived in her own home. Here, maybe she has to get up at 7:30 to be ready for breakfast at 8:30. The aides in this industry are instrumental in the day to day activities of seniors. To learn more about obtaining a degree in the medical industry look into nursing programs online. Assistants with nursing degrees can help out in a wide variety of ways. Although not as common, they can help assist in outside activities as well as everyday dining.  .

The dining room doors are open 8:15, sometimes there is a crowd of people in front of the door; the striking metal of wheelchairs and walkers clangs amid the confusion trying to get in. They wait to be served, to be fed, for their coffee or tea. The food may be hot, the coffee may be lukewarm. The milk in the tea can be skim milk. Her tablemates—maybe they help each other, like each other; maybe they don’t. It might be a dining room where they remember she wants orange juice, or maybe the help is new or doesn’t any attention, so she only gets milk. There are pills, from the nurse.

After breakfast they all leave the dining room, maybe she needs help and is the last one to leave. They go back to their rooms, or maybe sit in the foyer. She will wait for an activity, if she remembers that there are some, and if she is interested. Maybe she will wait for her son or daughter, not wanting to go anywhere to make sure they can find her.

In her room, perhaps she reads if she is able. Plays solitaire, knits, watches TV. Rarely does she visit another resident in their rooms; rarely do they come to hers.  Who comes to her room? The housekeeper, the janitor maybe; the laundry person who puts away her clothes, the nurse’s aides, the nurse. Maybe the recreation people, a volunteer.  Her family. How long does each one stay?

Lunch is a similar pattern as breakfast. The pills, the waiting, the noise, and/or the conversation and smiles of the staff and her tablemates. Afternoon, similar to the morning, maybe a nap. Maybe waiting for someone to help her on and off the toilet.  Activities—she will enjoy the music, the bingo, the bus outings, the afternoon tea with a friend. Maybe the two will gossip and laugh about another resident.

The visits from the daughter or son. The phone calls from a friend. They will warm her heart. She may remember them. She will feel the daughter leave; she may not remember the son has been there and wonder why no one comes to see her. She may wonder why she is still living; ask herself what is there to live for.

Sometimes the nurses and the nurse’s aides just come and sit down with her and talk. The same ones, who help her choose her clothes, change her, bathe her, and are gentle with her when she is in pain. They tell her about their families, their trips, ask about hers. So she knows a little more about them; she can feel a bond forming. They will smile at her and wave as they leave their shift for the day and tell her they will see her tomorrow.

Dinner—5:00, 5:30, rarely much later than 6:00 or 6:30. She will wait to go down, or wait for the doors to open. The food—good, warm, nourishing—a psychological message that she is cared for and safe. Or maybe skimpy meals, tasteless, that say something different to her. They don’t linger over coffee; the staff needs to clean up so they can go home, set the tables for tomorrow’s breakfast.

After dinner—she gets back to her room. The home is quiet, minimal staff, no receptionist, and most people in their rooms. Families visit then, maybe they go out.   Jeopardy, Wheel of Fortune, reading, a phone call. Help to change, to wash, to the toilet. To the bed. The nights can be long. Or they can short if the home is the kind of place where the staff wants everyone in bed by 8:30.

So when 5:00 or 6:00 a.m. comes, she is ready to get up again.

What It is Like

The experience of being the resident (and also of being the family member) of a care facility varies enormously. This is partly because of the vast differences in care facilities and care facility staff. It is partly because of the differences in the residents themselves.  It is also different because of what family members/caregivers are able to provide and because of the larger system (government, health departments, etc) of which the facilities are apart.

To truly appreciate life in a care facility, I think we must first have an understanding of the purpose of care facilities. The purpose is not care, it is to help the resident achieve and/or maintain the highest quality of life that is possible for that resident. Care is one aspect of how the purpose is accomplished, or a measure by which we can evaluate the extent to which the purpose is achieved. Quality of life comes from quality of relationships, and the meaning, purpose, and structure in life that people have. At the same time, quality of life is an individual matter, varying from person to person. Part of the home’s care quality comes from understanding what it means to each resident and the home’s ability to e flexible enough to meet that individuality.

Of course, achievement of quality of life is an ideal. Someone who is impaired may never have the quality of life they once had. A care facility is a system, no matter how good it is, it will have limitations. A care facility cannot give someone a high quality of life who never enjoyed life before, nor can it ever replace family and friends if they are not involved. So when we look at living in a care facility, we also need to do a reality check and keep that firmly in mind. If we don’t, and we allow guilt, anger, disappointment, and grief to overwhelm us, we will never be satisfied.

To start out with the obvious we can look at the facilities themselves. Qualities of food, physical surroundings, private room or roommates, experience with staff as well as quality of care and staff ratios are all going to impact on residents’ experiences. What is interesting is that when the latter are good, the physical issues take on less importance to people. The relationships are fundamental.

Less obvious is the psychological aspects of living in a system. The change from one’s own home to a care facility means that one is going from living life in private to living life in public. Even with one’s own room, a lot of facility life is lived in public. Dining, visits with friends and family, recreation all become part of the public domain to some extent. One is less able to hide, protect or manage one’s identity, including privacy of medical or emotional problems, than if they were living at home. Depending on the type of facility (assisted living, nursing home, etc.) one is also “in public” in the sense that one is constantly observed or monitored by staff. Knowledge of who or what one is, is in the hands of the staff, and not managed or granted by the resident.

As alluded to above, life in a system impacts also on one’s privacy in terms of space. Most of us, as adults, have control over how we manage visiting with people. We can offer a coffee, have some privacy, come and go on our own.  This freedom is often not possible in a facility. It is hard to learn to live in public and manage one’s life in public places. For people who are used to being a gracious host/ess, something changes.

What space one does have is often only minimally the resident’s own in terms of having their furniture and other possessions that they collected over a lifetime. These possessions are what help define them and link them to their past. Not having them can be very difficult.

Another aspect of living in public life is that people have not chosen the community. Members of minorities may find this especially difficult if they have been the recipients of prejudice. If you have lived in a black, Chinese, Jewish, gay or lesbian community, and are suddenly surrounded by a majority, which is different, this can be frightening.  You also have to learn to live more according to the norms of that larger group’s language or lifestyle. Whether a resident is from a cultural majority or a minority they may still have to become accustomed to people who, due to culture, disability, socio-economic class, etc. have habits and attitudes much different from their own.

Becoming used to other people’s disability can be especially hard. Residents often feel that “everyone here is so old,” and do not really see themselves in the same light. They may be frightened or put off by other residents with dementia who come into their rooms, invade their personal space, or act bizarrely.

Much of facility life, even in those which try to be as individually responsive is organized in a system. The system is organized to be able to provide care and services to many people. Choice in food, dining times, housekeeping, furniture, and TV loudness—all are regulated to some extent. Regulations also come from the larger systems—unions, professional organizations, health departments all have input into how a facility is run.  When one lives in one’s own home, what they put in their mouths, the condition of their home, everything is decided (to a great extent) by the individual. The individual makes the rules. In a facility, they make fewer rules. The result of this is that resident independence becomes curtailed, replaced by dependence or restricted choice.

Of course some people are in care facilities because they are unable to make decisions for themselves independently any longer. Yet many still can, and even those who cannot still have preferences and lifestyle histories that need to be respected.

In an odd way, there is a barrier between care facilities and the larger community. Part of this is psychological on the part of both sides. When people come into care facilities, they often let go of activities such as bridge clubs or other memberships, going to their place of worship, using their old hairdressers and stores. Their friends may stop visiting, and their social networks can shrink. If family members cared them for previously, they have less contact with their families. If they have been in their own home, they may have been isolated, but they often still feel part of a larger community—in a care facility they often do not, and may not be.

One result of this shift in barriers is that people in care faculties have a new set of relationships that they have to manage. They are more in contact with more caregivers who are strangers, and whom they did not choose. There is often a feeling that these caregivers have some power over them. The caregivers are people who bath, wash, feed and dress them—it is a type of intimacy which is not normal and which can be difficult to become accustomed to.

Family and friendship relationships also change. This includes less intimacy and frequency, but also often in terms of equality because they have so much less. If the family relationships especially were good and supportive ones, than this type of intimacy and security is decreased. Just because there are people around does not mean that there is intimacy, friendship, or safety.

Unfortunately, in a care facility, residents are also at risk for being abused or neglected. A “nice” facility in terms of physical set up does not insure that it does not occur. Abuse and neglect do happen at home, and the perpetrators can easily be caregivers as well as hired help. The reasons are often different. For family members (unless they are the perpetrators) abuse or neglect can be harder to control for when a loved one is in a care facility. Residents can live with a fear of speaking up, being troublesome because of fear of retribution. They can also be hesitant because they do not want to bother someone.  Or they can learn that their needs will not be met.

In the 1998 book, “Alone in a Crowd—Social Isolation of Seniors in Care Facilities” (Peanut Butter Publishing, Vancouver BC) a study of four care facility residents and families, found that 75% do not feel lonely very often, 80% often feel happy, and 80% often feel satisfied. In three of these facilities residents have their own room or share with one other. Many felt that they do have input and control over  decisions in their lives, for example. My impression is that quality is often higher as a rule in Canada than the U.S. because of the systems. However, the results do suggest that, given the appropriate facility, the experience does not have to be a bad one.

“Alone in a Crowd” reinforces that despite what one hears or reads in the media, some residents are content and happy in care facilities. For many people, it is a relief to have someone who will take care of them, help them with tasks such as dressing, bathing, grooming, meal preparation, medication management, etc. As well, many feel safe, secure, and fond of the caregivers. Both family and residents can come to feel that they are “part of the family” in the facility. I know I have come to feel part of a resident’s family many times over the years. For many, their rooms become their “home” and they feel a sense of pride and ownership.

 Residents also develop supportive relationships and friendships with each other. This happens between people who are quite demented, as well as those who are cognitively aware. Many people do manage to have interests and hobbies and some structure to their lives. This can happen not only because of the facility, but also because people recognize their limitations.

The crucial factor for many residents in their adjustment is the relationship with their families. When they continue to feel involved and part of the family; when they do not feel abandoned; when they feel important, then they can manage living in a care facility more easily.

How You Can Make A Difference

Families and caregivers obviously can make a difference in the quality of life for residents.  In my book, “Nursing Homes: The Family’s Journey (Johns Hopkins University Press, 2001) I have a whole chapter entitled Making A Home Better. I also discuss in many chapters how to have an impact on they system and with your loved one. This includes helping families to learn how nursing homes function, how to visit, about abuse, and about adjustment among other topics.

I also talk about caregivers starting with themselves. I firmly believe family members must understand what they are going through and be able to recognize and deal with their own emotions in order to be as effective as possible with their loved ones. This does not mean resolving every emotional issue; it means awareness, so that you can take care of yourself. Taking care of yourself will give you the clarity and strength to be an effective caregiver.

Specifically:

  1. Learn what quality of life means to you and your loved one and see what you can do to help provide or stimulate for it.
  2. Learn how to visit effectively, including activities.
  3. Learn about abuse and neglect and how to recognize it.
  4. Help maintain contact with other friends, family, and the larger community.
  5. Look for ways that the resident can have as much control and independence in their lives as possible.  This includes not allowing them to be talked about, or planned for. Make sure they are talked to and included in care planning.
  6. Encourage the development of relationships with staff and other residents.
  7. If you can afford it, hire a companion who can provide some individual time and attention  (but do not let them interfere with the life that is possible through the home. I discuss companions in my book also.)
  8. Make sure that the care plan adequately reflects your loved ones needs.  Try to obtain the professional help necessary to assess and treat issues.
  9. Understand the medical issues, medications, and treatments of your loved one.
  10.  Do not get manipulated into some kind of dysfunctional relationships with the staff or system; understand the relationship between yourself, your loved one, and the two of you with the home.
  11. Help your loved one to understand and feel safe with the system and staff (if you feel that such confidence and trust is merited).
  12. Know your rights and options.
  13. Remember that in some ways, the most important thing you can provide is love and caring.
  14.  Remember, in the end, there is only so much you can do—you may not be able to “make” your loved one happy.  Some of that may have to come from him or her.

Peter S. Silin, MSW, RSW is a geriatric care manager and principal of Diamond Geriatrics (www.DiamondGeriatrics.com) in Vancouver, British Columbia. He has worked in geriatrics and nursing homes for over twenty years. For more information on Nursing Homes: The Family’s Journey, please see www.NursingHomesBook.com  (Homes in the plural).

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