For many families, placing a loved one in a nursing facility is a dreaded choice made only when every last option (and caregiver) is exhausted. But a move may be necessary once a person’s medical needs exceed our expertise and stamina. Care in a nursing home can still be very personal if family members visit often and get involved. Here’s a story of how one loving caregiver enriched the lives of dementia patients at her mom’s skilled nursing residence by starting a “dream fulfillment” program.
Ms. Z. began her work by persuading the facility to add more cultural activities that resonated with the lives of the residents. That meant putting rice and beans and soul food on the dining menu for the home’s many Latino and African American patients. She helped find volunteers to paint bright, live-affirming murals in the drab hallways. Then, after completing these smaller scale projects, Ms. Z helped launch a campaign to raise funds for a Second Wind Dream program. This program is operated by a national organization headquartered in Atlanta, GA. Second Wind Dreams works with communities to discover and fulfill the dreams of elders living in nursing homes, assisted living facilities, and hospice centers. A primary goal of the Second Wind program is to change the perception of aging.
According to the organization, “A Second Wind Dream® is when a group of visionary believers enable an elder to awaken their dreams, often hidden or forgotten.” When such a dream is fulfilled, it “renews hope and champions further dreaming.” The program works with member communities to discover and fulfill the dreams of elders at the member site. In the facility where Ms. Z.’s mom lives, they were able to get a local philanthropist to donate the fee required for membership in the national network. To fulfill one resident’s dream, the group had Mario Andretti visit the site for an afternoon. To link the resident’s dream to other community activities, they also had a mural of Mario Andretti, Larry Holmes, and Chuck Bednarik — local heroes for the home’s Lehigh Valley residents — painted in the hallway. Staff and volunteers developed a process to get elders to tell them their dreams which are now fulfilled once or twice per month. In addition, the facility now has a “dream celebration” every three months.
The volunteer group has organized fundraising events to pay for some of the dreams which have included flying family members in for visits or taking a resident to Niagara Falls. But the nursing home has a multi-ethnic population and some dreams have been as simple as having a favorite childhood food — like collard greens or sweetbreads — served on a special day. One resident had an eyelid that never went down and was able to get a new prosthesis to help her lower the eyelid. You can read more about fulfilled dreams at www.cedarbrookdreamcatchers.org , the URL for the Pennsylvania site. Second Wind Dreams is celebrating a national anniversary on January 13th ,2011 and hopes to fulfill the dreams of many people across the country that day.
For Ms. Z.’s mom, the dream was seeing her whole family together. This involved transporting 25 people from around the U.S. to celebrate her “half birthday” in July, when snow could not ruin their travel plans. What a joyful day that must have been! Fulfillment of a dream like this make our waking lives more vivid and rich. Consider helping an elder realize a long-held dream at this emotion-filled time of year. Next week I’m taking my mom to see the Christmas tree at Rockefeller Center. It may be our last chance to make this trip, and I want her to be as happy as possible. Plus, she’s not the only dreamer in the house.
Providing companionship to a person with dementia is not easy. Memory lapses disrupt communication and can make the caregiver feel like they live in an echo chamber. Despite these barriers, I believe that I have developed a strong ability to understand my mom and enjoy quality time with her. Although I have learned a lot through trial and error, I talked with Maris Krasnegor, the director of the Communicare program at the Community Outreach Partnership (CORP), to get her advice on building a strong relationship with a fragile elder. In her 21 years of matching Communicare volunteers with elders in Philadelphia, she’s learned to identify some behaviors that can help a younger person foster a deep connection with a fragile or impaired elder.
I asked Maris to list some qualities that can help someone cultivate a strong bond with a fragile elder. She cited, “Patience, careful and compassionate listening, a non-judgmental attitude and a focus on the specific needs of the elder.” There are many issues that can derail your efforts if you are not careful about the way you approach problems. Maris notes that some common obstacles include, “Unanticipated time conflicts. People don’t always realize at the beginning that it is necessary to devote time to the relationship even when other things come up.” This has certainly been true in my experience. Time takes on a different dimension when you are helping someone with cognitive impairments. It took me months to give up my “let’s solve this problem” attitude and adapt to the rhythm of my mom’s real needs – which are not what I originally anticipated.
In the Communicare program, many of the elders have outlived their family members and need help getting health care or other services. Maris functions as sort of a coach who helps the volunteers learn how to help their elder match get what they need to improve their quality of life. She is also a bit of a marriage counselor who coaches elders and volunteers to resolve conflicts that arise in the relationship. I’m sure I’m not the only caregiver who wishes I had this kind of help! Caregivers are often exhausted by the effort it takes to distract their loved one from a problem that has no instant solution. A coach like Maris might help me find more patience when it is most urgently needed.
Maris feels that elders with dementia symptoms are best-served by volunteers who are older or have significant life experience. She says that it’s important to have “the ability to meet the older person where they are and to accept the person and not judge them.” This has been true in my experience. People who have the hardest time appreciating my mom are those who look at her through the lens of who she once was, instead of accepting her as she is now. The most supportive relationships, according to Maris, develop when the younger person encourages the elder to get involved in activities they can still manage and have conversations that do not focus solely on the elder’s problems. This reflects one of my basic strategies: When my mom just seems stuck and lost, I try to shift her focus to something that will stimulate her senses. Despite her many impairments, she still loves the color of a flower, the beat of a dance tune, or the sound of a bird outside our window.
In the Communicare program, Maris has seen volunteers connect so deeply with their elder that they helped plan the funeral or attended a family memorial as an honored guest. These relationships crossed religious, cultural, and racial boundaries. If a volunteer can create this kind of deep bond with an elder, we can also do this within our families. In spite of the many frustrations, finding a way to deepen ties with an impaired family member can be one of the most rewarding experiences in life.