How to Create Nursing Home Family Councils

In Part One of the Family Council posts, Karlin Mbah of FRIA discusses the role of the Family Council in improving the nursing home environment. In today's follow-up post, she addresses ways in which to organize families to create a Family Council. In addition to her suggestions, some of the tips I provided in my posts on Resident Council Meetings can be adapted for connecting with potentially interested families.

Overcoming Challenges to Family Council Organizing

The most frequent question asked by Family Councils is: how do we get more members?

Recruiting and maintaining members seems to be one of the biggest challenges to Family Council organization. First and foremost, it is important for Family Councils to realize that you do not need mass numbers to be successful! A Family Council of 4-5 can often make a big difference. Additionally, arranging Family Council meetings at a time families can easily attend and conducting well-run, focused meetings often helps increase numbers.

Family Councils often spring up when a major issue occurs and then die down when the concern is resolved. Finding positive projects to keep Family Councils running when no major concerns are present will help keep the momentum going and show the nursing home that the Council is dedicated to a positive growing relationship. Some Family Councils achieve this by conducting educational forums on long term care; others have activities such as picnics and entertainment.

A second major challenge to overcome is resistance on the part of the nursing home administration.

Family Councils can address administrative resistance in several ways. From the beginning, in talking with the administration, emphasize the supportive, constructive role Councils can play. Look for concrete ways to be helpful and connect personally with staff. Effective Family Councils walk a fine line between sometimes cooperating with administration, and taking a strong, independent stand at other times.

Where to Get Help

FRIA and many other citizens’ advocacy groups help Family Councils organize in nursing homes in their respective states. FRIA also has published a Family Council Manual and Tool Kit: A Guide to Creating and Sustaining Effective Nursing Home Family Councils.

For information on Citizen Advocacy Groups in your State go to the NCCNHR website. (NCCNHR, formerly the National Citizens' Coalition for Nursing Home Reform, is the national umbrella group of all long term care citizens’ advocacy groups).

Additionally, your local ombudsman can assist with Family Council formation. (The Ombudsman is the federally mandated nursing home advocate. Your nursing home is responsible for posting the name and number of your ombudsman in the nursing home).

Finally, you can seek out help by asking other well-established councils to mentor your group or getting assistance for a community organizing group such as a union or a non-profit.

Photo Gifts for Nursing Home Residents

In my post, What I Want My Nursing Home Room to Look Like, I mention I'd like to have family pictures in my room. Actually, I'd like everyone to have family photos in their nursing home rooms, in addition to photos of themselves when they were young. Before I started in long-term care (I was working at the state psychiatric hospital at the time) and Grandma Lily was in a nursing home, I bought a multi-photo frame, inserted pictures of the family, and hung it on her wall. It transformed the previously anonymous space and I felt happy to see her surrounded by loved ones whenever I came to visit. Pictures and memorabilia tell the story of someone's life and remind everyone who the person is. They're the single most homey addition to a room and they last longer than flowers. I'll be talking more about the holidays as they approach, but if you're wondering what to get a nursing home resident, photos are an excellent gift.

Dale Carter, (Transition Aging Parents), told me about Beak Design Studio, a website by Hiromi Walleser, who creates portfolio posters especially designed for residents.

My parents were thrilled with their 50th wedding anniversary gift of a photoscope created by the talented Sue Samek of Photoscope Gifts. Sue creates one-of-a-kind artwork from your photos.

Here's a photoscope of Sue's family, and a detail of the work. She also creates photoscopes for hobbyists (cat lovers, gardeners, etc), travel buffs (a great idea for vacation photos), and any series of photos you can imagine.

FRIA on Nursing Home Family Councils

Today, guest poster Karlin Mbah, of the New York-based organization Friends and Relatives of the Institutionalized Aged, explains what Family Councils are and how they can work with nursing homes to improve care for the residents. In a later post, she'll discuss ways to create a successful family council.

Background on FRIA and Karlin Mbah:

FRIA: The Voice and Resource for Quality Long Term Care is a not-for-profit organization dedicated to fostering the dignity and independence of seniors in long term care settings, with a special focus on nursing home residents, and to ensuring that they receive prompt, high quality compassionate care. We seek to accomplish this by helping friends and relatives become more informed and effective caregivers for the needs of their loved ones.

Karlin Mbah is the Family Council Coordinator and Policy Advocate for FRIA. As the Family Council Coordinator, Ms. Mbah provides technical support and assistance to Family Councils in the New York City greater metropolitan area.

Currently FRIA conducts quarterly “Advocates of Nursing Home Reform” (ANHR) meetings at which Family Council members and leaders from all over the City meet to discuss issues and projects in their nursing homes. FRIA will also be assisting ANHR members in publishing a quarterly newsletter, by and for Family Councils, which will begin distribution in 2010.

Ms. Mbah also works on FRIA’s free telephone helpline (212-732-4455) which is open M-F 10AM-5PM to answer your questions about long term care.

Parts of this blog contribution were taken from FRIA’s Family Council Manual and Tool Kit by Jean Murphy and Jessica Herold.

Family Councils:

What is a Family Council?

Family Councils can play a very important role in helping residents of a nursing home have good quality of care and quality of life. A typical Family Council is a group of committed families and friends of nursing home residents who work together to improve the quality of life for all residents in a particular facility. For simplicity, I will refer to Family Councils and their members as families, but friends, partners, significant others, and all regular caregivers participate equally in Family Councils and are included when I refer to “families.”

Family Councils have the right to organize under the law. Under Federal Law, the 1987 Nursing Home Reform Act (OBRA ’97) recognizes that families are an important part of a nursing home community and serve as advocates for good care. The Act guarantees families of nursing home residents the right to meet together in a facility, and to be provided with space, privacy and staff assistance, if sought. Administrators are required to listen to, and act upon, the recommendations and grievances of Family Councils. Several States, including New York, have strengthened and empowered Family Councils by enacting laws that give additional rights and protections to councils, beyond those provided by federal law.

What Do Family Councils Do?

Family Councils bring about positive change in nursing homes. The structure and activities of councils vary greatly, depending on their membership and the issues they decide to address. Some typical Family Council activities include:

· Welcoming new families and friends to the nursing home

· Offering support to each other

· Raising concerns and complaints and working to resolve them

· Providing education and information

· Improving communications with the home

· Arranging joint activities for families, friends and residents

· Recognizing staff for good work

· Connecting to community resources

· Speaking out on public issues

· Taking the lead in bringing new models of long term care to their communities, such as person centered care, also known as Culture Change.

Family Councils allow a venue for families to address their concerns in a safe setting and get support for the resolution of these concerns. Nursing home staff attend Family Council meetings by invitation only and must respond to recommendations and grievances presented by the council. These recommendations and concerns can be made in the name of the group, thus providing anonymity to individuals and a united front of families working for better care.

Therapeutic Use of the Internet in Nursing Homes

A recent study by the Phoenix Center looked at adults 55 and over, but not employed or in nursing homes, and found that Internet use decreased their level of depression by 20%. I'm not at all surprised by this, and I believe a similar decrease in depression levels would be observed in nursing home residents as well.

While residents are living together rather than isolated in their own homes, and therefore have more opportunities for socialization, there are still many people who don't partake of the recreational activities offered for their enjoyment. Some residents never leave their rooms due to physical or psychological barriers, and some don't like crowds. Other residents feel uncomfortable socializing because of the physical changes of illness, wish to pursue activities other than those available in the nursing home, or miss connecting with those outside the home. The Internet offers the opportunity for nursing home residents to transcend their physical illnesses, leave the boundaries of the facility, and connect with the world.

In an earlier post, I shared ways in which I use the Internet for therapeutic purposes, and I believe they're worth repeating here:

1. Psychoeducation Regarding Illness:

Often residents are given diagnoses, but little information about them, leaving them confused or upset, which can result in noncompliance with medication and care. I search for a resident’s illness with them on the computer, and discuss the symptoms and treatment, which enhances cooperation with medical staff. Some residents are more receptive to information coming from a “neutral” source than from their own caregivers, and most residents appreciate a print-out of information they can refer to over time. Posting a list of illnesses and the Web addresses of important sites near the computer would facilitate this process (eg; The American Diabetes Association, the Amputee Coalition of America, etc).

2. Support Regarding Illness:

Most of the residents deal with their illnesses in isolation, when there are many avenues of support available to them on the Internet. Having the opportunity to “discuss” their concerns anonymously with peers can often be more effective than trying to generate a conversation between two or more residents at the nursing home, due to discomfort at revealing personal information. At strokenetwork.org, for example, stroke survivors can “meet” other survivors on-line and get information and emotional support, as can their caregivers. To find the appropriate support groups, enter the name of a particular illness and “support” into the browser window and look around from there. Another option: Look for a Yahoo group about the illness and sign up the resident after establishing a free email account through resources such as Yahoo or Google.

3. Connection with Family and Friends:

Why should residents have to limit themselves to family visits or phone calls when most of the rest of the country is communicating via email, Twitter, or a social networking site such as Facebook or MySpace? I’ve established email accounts for octogenarians to help them keep up with the grands, and a free Facebook page would accomplish the same thing with a bit more zing.

4. Reminiscence:

I once worked with a terminally ill 88-year old man who’d left Barbados in his thirties and had never realized his dream of seeing his country again. Imagine his expression as I entered “Barbados” into Google Images and up popped photos of the country he thought he’d never be able to see again. This intervention generated a flood of memories and a profound sense of relief and closure. Reminiscence could also be conducted in a group format, with connection to a large screen, so that residents should share with others information about their home countries or hometowns.

5. People Search:

One of my favorite things to do with residents on-line is to find their long-lost friends and relatives. For example, through the Internet white pages, I helped one extremely lonely and depressed resident find a friend with whom he lost touch sixty years ago. They are now enjoying an exchange of letters and photos, and my patient has something else upon which to focus besides his poor health and lack of visitors.

6. Fun & Miscellany:

Acting under the theory that doing something enjoyable will begin the upward spiral out of depression, I’ve occasionally brought a resident to the computer to listen to their kind of music (try shoutcast.com), to check out the latest fashions, or to see photos of famous movie stars (Google Images). Once a 97-year old Panamanian resident told me she’d felt unattractive all her life because she thought her lips were too big. “Oh, no,” I told her, “your lips are considered beautiful and the height of fashion.” She believed me after I clicked on Google Image photos of Angelina Jolie.

Do you have more therapeutic uses of the Internet? Please add them to the Comments section.

Living Wills and Other Advance Directives

One of our dear cats is very sick. This prompted a family discussion about how much care to provide him, and led to a talk about our own wishes should we become ill.

I recently read a post on WiseHands, a massage therapy and hospice blog, about how working with people who are dying can change the way we feel about death. Part of my job as a nursing home psychologist is to help people prepare for death, and it took time for me to grow comfortable with this. I find my patients usually welcome the opportunity to discuss treatment decisions and dying, but sometimes it takes several attempts before they are fully ready to talk about it. I imagine it would be the same for family members trying to have similar conversations.

The CBS News article, Some Nursing Home Elderly Get Futile Care, emphasizes the importance of having end-of-life discussions. For those interested in preparing living wills and advance directives, the Mayo Clinic has an informative website to get you started.

Mother and Son

I peered into Ms. Alford's room and saw a visitor sitting in the chair next to her bed, where she was sitting with a stack of photos on her lap. Ms. Alford noticed me and waved me into the room with a broad smile.

"This here's my son, Willie."

"And you are?" His worried eyes met mine.

"The psychologist, Dr. Eleanor Barbera. I've been seeing your mother since just after she arrived. I'm glad to meet you."

"Can I talk to you?" He was out of his seat even before I got Ms. Alford's nod of assent. We stepped into the hallway and spoke in hushed tones. "How's my mother been doing? She was so depressed the last time she was here."

"Well, she was very withdrawn and not eating well or working with the staff when she got here a few weeks ago, but she's doing better now. I only see her once a week and I'm not on the floor all the time, but it seems to me things improved after I took her upstairs to meet with an old coworker of hers who happens to live here too."

"Really?" He looked at me with pleased surprise.

"I tried to get them to hook up at some activities afterwards, but it can be hard to arrange. Being on different floors can be as difficult to connect as being in different states. But here's her friend's name and room number," I scribbled it on a sticky note, "If you could help them get together, that would be great."

"I could definitely do that."

I shifted my gaze to his mother, who was watching from her bed in her house dress, her hair flying in every direction. I waved and she smiled and waved back. "Your mom really needs to get her hair done."

"I used to cut it for her. I could do that again. It would be a great bonding activity." His mood was lighter and he sounded excited.

"That would be awesome. I'm sure she'd really appreciate that."

We headed back into Ms. Alford's room and the three of us talked for a while before I signaled it was time for me to leave.

"Thank you so much," Willie Alford said to me, "you've given me more than I could have hoped for."

"I'm glad," I replied, happy Ms. Alford had a son who so obviously cared about her welfare.

Something Good About Nursing Homes: Gary M. Riffe's Story

This positive story about long term care is from the perspective of a nursing home administrator/president. If you'd like to add your own good news, please use the comments box at the bottom of the post, or for a possible featured blog post, send me an email using the Contact Me button on the top right corner of the blog. Enjoy!

"Having been a part of the Long Term Care profession for more than 38 years, I find myself always being defensive. You are right in the fact that most of the good news in nursing homes never gets printed, just those about the bad things. I would love to share a couple of projects we are doing in our facility which have been wonderful for those residents entrusted into our care.

One is a writing class. It started out with residents writing/telling something about their first day at school, or their first car, things of that nature. It was fun to hear them share. We had some assistance from our activity staff and a couple of volunteers. We collected these short stories and printed them into a book and invited their friends and family to come to a reading. Most of the residents read their story. It was a blast to watch a gentleman with Alzheimer's disease read flawlessly as if he were giving a presentation to the city committee. He never missed a beat. Yet when he had finished and a couple of others shared their story, he asked when his turn would be. To assist in our second book, we asked the our local college if any English majors would be interested in coming and assisting the resident in writing their stories. We were able to have two students come for a semester and would record the story and help the resident in getting it ready for print. We have printed 3 booklets of short stories and each resident and family member receives a copy.

Our second project was a dream of one of our staff members and it's like the “Make a Wish” program. It’s called “Day Dreams.” We have a dream team made up of staff, who then volunteer their time in helping residents have a wish come true. These dreams can vary from going a local restaurant with their loved ones, to flying model airplanes, to traveling out to their homestead, to riding in a parade in a convertible with the top down. There is no cost to the resident of this experience. We have been able to receive some donations to help cover the costs. We have been able to do over 45 dreams since 2005. These are only a few of those dreams.

I share these with you to encourage others, that being a Caregiver in a Nursing Home is a wonderful profession. It is not for everyone, but most of those caring for others are angels.

Thanks for stating there is a lot of good going on in Nursing Homes."

Gary M. Riffe, CNHA, Fellow

Administrator/President

Hi-Acres Manor Nursing Center

Jamestown, ND