• What?
• Preliminaries
• Books
• Video
• Listservs & Blogs
• Caregiver Support Groups

Helping a family member move into congregate care brings a lot of changes for the caregiver and the family member. For many caregivers, the stress doesn't decrease, and this puts them (you?) at increased risk of stress-related illness. There is also relatively limited support for family caregivers in adjusting to these changes. These pages will present some possibilities for service providers to suggest to caregivers, or for you to test yourself, if you are a caregiver (and many service providers fall into both categories). First, here are some things to consider about "support."

Change and Grief as Processes

Adjusting to change is a process. What people find supportive will depend a lot on where they are in that process. While everyone experiences and responds differently to change, and does it at a different rate, sometimes it is helpful to understand the generalized experience of people in the same situation. An earlier issue of ASPN looked at the Transtheoretical Model of Change (Velicer, Prochaska, and colleagues, 1998), which identifies stages people often go through to make purposeful changes in their behavior. This may be helpful for understanding the deliberative process of caregivers who are coming to the realization that their family member needs to move to congregate care.

However, many people enter nursing homes or other congregate care when they are discharged from the hospital after an acute illness. In this case, both the family member and caregiver are catapulted into a new situation to which they must adapt, and when this happens, patterns of grieving likely will be closer to the process they go through. There are several different models of the stages of grief. Here's just one:

• Accepting the reality of the loss
• Experiencing the pain of the loss
• Adjusting to the new environment
• Reinvesting in the new reality.

Change and Grief as a Time of Rapid Learning

As adults manage the emotions of adapting to loss, at the same time they are learning a lot of new things. One way to provide support is to make that learning as easy as possible. To do that, it is helpful to keep in mind two things about adults and learning. First, adults are very often "just-in-time" learners, acquiring new information and skills just before or as they need them. Second, adult learners have different preferences for how they learn information. One very general way to categorize these styles is the V(isual)-A(uditory)-(K)inesthetic model. (More on this.) Simply put, some adults prefer learning by what they see (reading or pictures), others by what they hear, and still others by what they experience by doing or touch. Preferences may change depending on what it is the person is trying to learn. The point of this is that to be effective, information should be accessible in a variety of ways. So, to the extent possible, in these pages we will try to identify resources that fit a variety of learning styles. If one resource isn't working well, try another that works in a different way. That said, we're academics here, so we'll start with print.

Books

Doug Manning. When Love Gets Tough: The Nursing Home Dilemma. New York: Harper & Row, 1990. 100 pp.

Both Edna Ballard and Kathy Lowe recommend this short book to families. It challenges the notion that "least restrictive option" always means care at home and supports examining the needs of both the person needing care and the caregiver. Manning acknowledges that often there isn't a perfect or even a very good choice, but that people can make the best possible choices among less-than-perfect alternatives. He reviews the stages in making the decision to help a care recipient move into congregate care-sections on making, implementing, adjusting to, and living with the decision. In the section on adjustment, he talks about grief on the part of the person moving into care:

People who enter a nursing home go through a period of grief or mourning. I hesitate to use the word grief because it is connected with death in our minds. Grief is the natural response we go through when we suffer loss--any loss. If I lose my billfold, I go through a period of grief. I have a hollow feeling in the pit of my stomach for a day or two, and I feel a sense of loss. . . . Displaced people suffer grief. . . . When an elderly person is moved from home, that person loses routine, friends, social position, and turf. The nursing home resident must go through the grief process in order to adjust to the new order of things. Entering a nursing home is not the problem. Elderly people would go through the same experience no matter where they moved. The problem is the displacement--not the place.

Somewhat later, Manning also talks about caregivers' guilt, one source of which is grief, as well, linked to the need to adjust to the changed relationship. He later suggests that some of our unrealistic expectations of nursing homes are based in this guilt, as well as many of the horror stories we hear.

A book I haven't had the opportunity to look at yet is Manning's Share My Lonesome Valley: The Slow Grief of Long-Term Care (Oklahoma City: In-Sight Books, 2001), which seems to focus more on the caregiver's journey.

Edna Ballard also said she recommends this book to families: Promises to Keep: The Family's Role in Nursing Home Care by Katherine L Karr (Amherst, NY: Prometheus Books, 1991). Here is part of the publisher's description:

Karr's clear, concise, step-by-step instructions address the physical, mental, emotional, and spiritual components of caregiving. Advocacy and medical self-care are central themes. Her practical and comprehensive guidelines will help families effectively supplement care, thereby becoming integral to the caregiving process. Challenging the traditional positions that have encouraged patient/family passivity and compliance, she returns the focal point of attention to the unique role that family plays in enriching the lives of nursing home residents. Promises to Keep provides a manual for training family members, nursing home volunteers, community agencies, and support/advocacy groups. http://www.prometheusbooks.com/

To test what might be easily available to caregivers, I checked my public library and found these three books.

Peter S. Silin's Nursing Homes: The Family's Journey looked promising, if only for the title. In fact, Silin provided social work services at a long-term care facility and was asked to create some information sheets for family members, which eventually became this book. The first three sections focus on various aspects of the decision making about finding and helping someone move to congregate care, while the fourth section addresses the family's role: Care and care planning, communication and problem solving, visiting, caregiving from out of town, advocacy for better care, and end-of-life decision making.

The book contains many brief case examples, and it is written in a very accessible and engaging way, although it may be more suited to caregivers who are avid readers than to those who learn better in other ways.

When Someone You Love Needs Nursing Home Care: The Complete Guide, by Robert F. Bornstein and Mary A. Languirand (New York: New Market Press, 2001, 270 pp.) follows the journey from identifying the need for care, through home care, to congregate care (with a chapter on returning home), to end-of-life care. This book focuses on many of the practical aspects of providing and arranging for care, and it contains checklists and worksheets that may be helpful. One chapter is entitled "Confrontation or Partnership--It's Up to You: A Down-and-Dirty Guide to Nursing Home Politics," which outlines the staff positions and roles in nursing homes and suggests constructive ways to advocate on behalf of the resident. This book may be somewhat more inviting than Silin's to caregivers who are less avid readers because of the open way it is laid out.

Nursing Homes: Getting Good Care There, by Sarah Greene Burger, Virginia Fraser, Sara Hunt, and Barbara Frank (San Luis Obispo, Calif.: Impact Publishers, 1996; 166 pp.) is focused on advocacy on behalf of residents of congregate care, as one might expect of a book prepared for the National Citizens' Coalition for Nursing Home Reform. The book reviews residents' rights and suggests practical ways family and friends can help residents establish and maintain their desired quality of life, through participation in care planning and in good communication with the resident and staff to address problems.

Video and Audio

Kathy Lowe suggested this short video, which includes a caregiver talking about how she felt after her mother moved into care. When Your Parent Needs You: A Guide to Positive Growth When Caring for Aging Parents. Paraclete Video Productions. 35 minutes (available in VHS and DVD) from http://www.paracletepress.com.

I have been trying to locate books on tape or CD and have not yet had much luck. Here, however, is one that seems to be in the works, listed through Amazon: Hugh Delehanty, Caring for Your Parents. The print version is also available through the AARP website.

Listservs and Blogs

Listservs can provide a community of people with similar interests and needs. Although both rely on access to the internet and the ability to read the screen or have it read, they offer an opportunity for learning through interaction, and to some extent, they are available to caregivers at their own convenience. Here are links to a few organizations that sponsor lists specifically for caregivers.

• Family Caregiver Alliance. You can join four different groups through their website.
• Caregiving.com. These are hosted through Yahoo Groups. There are listservs for caregivers in all stages, including those who are making the transition to caring for someone in congregate care.
• Yahoo Groups. If you search for groups on caregiving, you'll find additional ones. To use any of these, you'll need to sign up with Yahoo (free).
• ACOR—Association of Cancer Online Resources—has an extensive list of listservs for cancer patients and their caregivers.

Blogs (web logs) offer the possibility of seeing other people journey through the caregiving process and offering or asking for support or commenting on their experiences. Technorati is a directory that lets you search for blogs by content (try caregiving).

Here are two blogs to look at (I'll be adding a few more), written by people who have made the transition from care at home to care in an institution, and they provide links to other blogs they have found helpful. You may want to look back through their archives to learn more about their caregiving journey.

• Anne Robinson, Mondays with Mother: An Alzheimer's Story
  http://www.annerobertson.com/2004_09_19_annerobertson_archive3.html
• Deb, The Yellow Wallpaper
  http://yellowwallpaper.net/blog1/
  When I asked to put a link in this page, Deb said about her blog, "I began it because I didn't have the time or motivation to attend a support group, especially when I was actually living with my mother. I think that many folks, including myself, are more comfortable composing their thoughts and writing them down on their own time, too. What's interesting is that as a result of the blog I have my own international support group now! I've become friends with several of the bloggers on my bloglist—people I'd never be able to meet otherwise."
  Deb also suggested a book she found helpful planning and managing the day of the move, Moving a Relative with Memory Loss: A Family Caregiver's Guide, which she borrowed from the Alzheimer's Association, and also available from Whisp Publications. She said, "It talks about the actual moving day—what you experience emotionally and practically, step by step. So much of that experience is not intuitive—I've learned that many of the things I want to do, and feel I should do (e.g., spending LONG periods of time with my mother) just aren't good for her. A few short visits each week (I live close to her facility) are better than one long visit, where she inevitably gets down in the dumps by the end of the visit."
• For 15 years, Patrick Leer, took care of his wife, Patti, who has MS, at home. In 2004, her physical and cognitive losses made care in an institution the better of two difficult choices. His blog archives contain an extraordinary description of the practical and emotional challenges he has faced and continues to face, as well as victories large and small.
  http://journals.aol.com/daddyleer/CaregivinglyYours/"

You can establish your own blog through a variety of sites. You may find it useful for communicating with family members who are participating in care—some sites allow you to tag parts of what you include so they are available to all visitors or just a select few.

Somewhat different are online message boards and discussion groups, where someone launches a question and others respond. AARP sponsors a Caregivers Circle at http://www.aarp.org/families/boards/.