Post contributed by Jackie Waters
Losing a spouse can have a devastating impact on seniors, both physically and emotionally. Getting older is a slow transition that comes with its own physical, mental and emotional stressors, but when you couple that with the overwhelming sense of loss from losing a spouse, the aftermath can be debilitating.
When a senior spouse dies, your entire world can turn upside down. The grief and sorrow of losing someone you have likely spent the bulk of life with can cause you to feel numb, shocked and distraught. Who are you without this person next to you? How will you get through the day-to-day without his or her guidance? If aging has been a difficult journey, filled with stress or sickness, you may feel alone, isolated or even abandoned. On top of the emotional trauma, you may also start having more troubling health concerns yourself.
There is no manual for how to deal with the loss of a senior spouse. Mourning the loss of a partner can bring you to your knees. Seek out friends and relatives for strength and compassion, but also know that you have wells of these emotions within.
At first, you may feel little or nothing, especially if your senior spouse was ill or suffering. That’s often the shock of death hovering just above the surface of deep pain. Depression and an overwhelming feeling of helplessness are often a part of the grieving process, and can strike at any time. Try to reach out to a friend or family member to help you cope with your various emotions during this difficult time. Some clinicians believe that we go through specific stages of grief, while others suggest that grief manifests in mood swings that rapidly switch from one moment to the next. You might feel anxious or unsettled one day, and then upbeat or optimistic the next. However you grieve, your grief is your process of accepting and growing through the trauma of losing your life partner.
What You May Experience
When losing a senior spouse it’s not uncommon to feel the heavy guilt of being the survivor. You may even feel angry at your spouse for leaving you. Then you might experience guilt or depression for feeling angry. When dealing with the emotional aftermath of death, senior spouses may also experience:
How to Cope
While your emotions are healing, try not to make major decisions. If you must make these decisions, reach out to a loved one or a friend to help you feel less overwhelmed. Even if you’re not hungry, try to eat at regular mealtimes and go for peaceful walks. Though you may feel like being alone, resist the urge to isolate yourself. Spend time with your grandchildren or a neighbor. You can also volunteer and take classes at the local community center or your nearest library to stay active and social. Consider joining a support group to work through your feelings or adopting a pet to keep you company at home.
Regardless of how you feel, the grieving process takes time. There is no right or wrong way to mourn, and no timeframe to adhere to. Take your time, take it slow, and be patient with yourself.
[Jackie Waters reached out to Memory Café Catalyst wishing to share what she has learned while helping her family cope with her mother-in-law’s passing. She is also the author of a blog that provides tips on home organization and simple living.]
About a year ago "Aroma de Cafe" was launched, the first Spanish-speaking memory cafe in Massachusetts. It is held in the city of Lawrence, in a predominantly Latino community. The room is decorated with real palm trees, pictures of coffee and cocoa fields. Traditional foods are served, and period style music plays softly in the background. The coordinators named the cafe after the scent of brewing coffee, which is evocative for most of their guests, who come from Puerto Rico, the Caribbean, Mexico and Central America.
In order to encourage and support the development of more Spanish-speaking cafes, we translated our free Memory Café Toolkit into Spanish. It includes a description of Aroma de Cafe written by the cafe coordinators, along with step-by-step instructions for starting a memory cafe, sample budgets, and templates that can be adapted for the use of a new cafe. It is now available at www.jfcsboston.org/GuiaCafeDeMemoria. The English version of the toolkit is at www.jfcsboston.org/MemoryCafeToolkit.
Please share this link with any Spanish speakers who might be interested in starting a café or simply learning more about the memory café movement. Together we can help share this model so that more and more people can benefit.
Memory Cafés provide a much needed opportunity for both care partners to get out of the house and connect with an accepting circle of friends. At Memory Care Café here in the San Francisco Bay Area, we hear from our guests how important it is to have that break in their daily routine, and to take part in a fun social outing together.
Most memory and Alzheimer's cafés across the country meet once or twice per month. We are lucky enough to offer a café event weekly in our area. But we know that care partners need to get out and engage in their communities more frequently than that!
Wouldn't it be wonderful if there was a comprehensive resource for 'forgetfulness friendly' activities to help fill the gap between memory café events? It's a difficult proposition because most senior organizations don't have the bandwidth to collect and post information on local activities available across regional organizations. It's a lot of work, and there may be some concern about liability when advocating for events sponsored by other organizations.
Our current solution is a "Forgetfulness Friendly and Free" Bay Area page available on our memory café website. We keep our eyes and ears open for local events, programs and services that fit that bill, and update the page frequently. Listings include a short description, time, location, cost (if any), and contact information. We cannot cover everything that's out there of course, but we keep it fresh, and we incorporate feedback from our community.
If you're interested in creating such an activity resource for your café members, have a look at our page HERE. The Café Catalyst community would also be grateful to hear about how you find activities and get the word out in your area! Please shed some light by posting a comment or sharing on our forum.
We are fortunate to have a member of our community who wants to plan a monthly conference call for Café organizers across the country to come together and share experiences and ideas that will help build and keep our Cafés vibrant and growing. See below Marshall's suggestion and details on how to join the call:
Fellow Memory Catalyst Leaders,
After working with a local team to develop a model we can use to roll out multiple Cafes in San Diego, we now have six scheduled venues, and over a dozen more sites asking to host Cafes. Now I'd like to learn what I can from others and thought it might be interesting to talk with others through a live conference call.
I'm happy to host the call and wondered how many others would be interested in participating to share and learn from each other. My motto has always been, "None of us is as smart as all of us". I talked with Debora about this months ago and she was supportive, yet I wasn't ready to start this until I had my own Memory Cafes launched with some personal experience to share.
Anticipating some interest, I'm providing a link with some time slots that work for me. If you are interested, choose ALL the time slots that also work for you. Once we have 6 or more respondents, I'll share the slot with the highest participation and notify everyone.
Once we have the time scheduled, I'll provide the dial-in number for the conference call. I hope you will be able to join us and share what you've experienced.
Hope this works for some, as I'd love to meet you and talk with you about your experiences and share mine now that we're launching multiple Cafes in San Diego, with more to follow.
Young volunteers are making some magic at the JF&CS Memory Café! The café just opened on March 7th—the second in Massachusetts so far—and it’s off to a strong start, in part, because of some enthusiastic student volunteers from Brandeis University (volunteers attending their May 2nd café are pictured above).
Beth Soltzberg, who spearheaded development of the café at the Waltham Jewish Family and Children’s Service (JF&CS), got the idea to create an intergenerational café program from Upper Valley Memory Café at Dartmouth in New Hampshire, which has volunteers from a sorority on campus. She believes that educating young volunteers on how to embrace people living with memory loss is a valuable outcome of this kind of collaboration. “An important goal of the memory café is to break down walls between people with dementia and others in our community,” she says.
When Beth first reached out to the Brandeis Student Volunteer Organization, she was happy to find a very organized and enthusiastic group of students, which already had a subgroup specifically dedicated to doing work with elders in the Waltham community.
Nonetheless, the students were a little nervous initially. They wanted to know—how do I relate to the people at the memory café? Beth developed a schedule to help them feel comfortable about where they should be and what they should be doing at different points during their first café. She encouraged them to just get out there and give it a try, and when they did, they found that they really enjoyed the group. The feedback from the leader of the student volunteers is that the experience has been “magical.” And now, the student volunteer organization has taken on the responsibility for screening, training and scheduling volunteers, which has been a real boon for this new café.
The café is housed at the JF&CS office building in Waltham, which is about 10 miles outside of Boston. They have a small start-up grant but will be looking for additional funding in the fall. The café already has 15 regular attendees—mostly ‘early adopter’ types according to Beth—who have open minds about trying something new.
Their community seems to want something programmatic for the café meet-ups. One café attendee told Beth that having an invited guest presentation helps motivate her spouse to get out of the house. Beth has invited community artists to do interactive projects, and they also have singing, dancing, and of course, lots of great socializing and refreshments. She is planning to have more artists, musicians, and poetry presentations in the future.
Next fall, the students at Brandeis have offered to take on some of these programming responsibilities as well, possibly bringing in students and faculty who want to visit and share their knowledge and passions on various topics.
Collaborating with a university is not a common model for memory cafés yet, but it is certainly worth considering if such an opportunity exists in your community. Students and faculty can clearly be a resource for the café, and, in turn, the café can be a great learning opportunity for these volunteers.
Do you have students volunteering at your café? We would love to hear more about intergenerational memory café programs!
Fort Walton Beach Neighborhood Memory Café in the Spotlight:
Maryann Makekau is off to a great start with her new memory café in Fort Walton Beach, Florida. And I’m not surprised. Her warmth and enthusiasm are palpable in every interaction—even her emails bring ‘Hugs from Maryann.’
Hope Matters to Maryann. Through writing, speaking and advocacy, she spreads love and hope to people coping with cancer, deployment in war, memory loss and other difficult life situations. Where memory loss is concerned, it’s personal—her mother is living with Alzheimer’s and Maryann approaches every aspect of her new café with the experienced eye and heart of a caregiver.
The Fort Walton Beach Neighborhood Memory Café began in June of this year and their sixth café gathering is coming up on November 29th. A group of 20-30 are currently taking part in these monthly social events held at Synergy, a local organic juice bar and café.
How did she start a successful memory café from scratch? Below, Maryann generously shares some helpful tips from her ongoing café development experiences.
Like many memory cafés, the focus in Fort Walton Beach is on relaxing, chatting, and making new memories with others who are experiencing similar circumstances. She has also incorporated opportunities for guests to make art, experience music and dance. One very unique community building idea is their ‘memory board’ (see photo above). Pictures of previous café gatherings are hung from a chalkboard and guests are encouraged to share their thoughts.
“What word does this picture bring up for you?” she asks attendees.
Maryann says the board has become a point of connection for creating community in the moment and remembering past experiences together.
Synergy Organic Juice Bar and Café sounds like just the place to nourish the mind, body and soul! Guests are served refreshing drinks, fresh coffee and healthy snacks. Maryann shared this tip about café ambiance: she pushes individual tables together to create one long table where everyone sits together ‘family style.’ She finds that this physical format creates a better space for connection and camaraderie.
Maryann also knows that when couples or care partners venture out of the home, routine tasks can become a source of stress if their destination is not user-friendly. In that light, she made sure the venue was handicap accessible, particularly where the restroom facilities were concerned. She gave two additional suggestions not included in my earlier post on Memory Café Environments: 1) Make sure the restrooms are labeled as “unisex” during the event so that spouses can help their loved ones and, 2) Bring a basket with extra supplies like wipes, gloves and briefs—little conveniences that will make all the difference for guests.
Maryann has rounded up several local sponsors—eight at this time—to help with supplies and food. Her thoughtful way of appreciating her sponsors is also respectful to her café patrons: While sponsors are not always present for the café event itself, she includes the names of these organizations on meeting reminder cards, tips sheets, and on the banner at the top of her Hope Matters Facebook page and website. Sponsors of the memory café currently include the local Massage Envy, a home health care agency, two assisted living facilities, a senior day care, and a medical imaging facility. Additionally, a local hospice and a graphic arts company provide in-kind donations of supplies and artistry, respectively. The Synergy Café generously closes its doors to the public for the memory café gatherings each month and provides healthy snacks at a fixed low price (with costs paid by the sponsors). Although the local Alzheimer’s Association supported her initiative by attending the café’s opening day event, they are not sponsoring the café directly.
Outreach, outreach, outreach…
Maryann also has some useful suggestions on outreach. When first starting out, she did a press release, reaching out to local media to ensure coverage of their opening day event. Importantly, she formed collaborations with local community-based services and medical providers to further spread the word to people in need and increase the likelihood of direct referrals. Maryann made in-person contact with support groups, neurologists and other physicians in the Fort Walton Area and continues to pass out flyers with information about upcoming meetings. One of the café attendees is also on board helping Maryann’s volunteer efforts with the outreach.
For those of you who are just getting started and/or looking for simple marketing ideas, Maryann has provided us with her press release, café event flyer, the brief summary she uses on meeting reminder cards, and an information sheet for potential sponsors. Feel free to use them as templates for your own café outreach and fundraising needs.
Maryann says she included the word “neighborhood” in the café name because she is hopeful it will inspire the emergence of more grassroots memory cafés across the Florida Panhandle. In particular, the recent news report out of Cornwall, UK on the development of a memory café specifically for veterans has her thinking about that need in the Panhandle area.
“We have a large military population here and it would be great to work towards developing similar cafés in coordination with existing veteran services in our area.” Wouldn’t that be a fantastic addition here in the US?
I applaud Maryann’s vision of “more memory cafés… as places where isolating stigmas are uncommon and miracles inside Alzheimer’s are commonplace.”
Hugs to you, Maryann, for your inspiration and thoughtful tips!
To learn more about how to start a memory café see the Guidance section of our Resources page for links to available handbooks, toolkits and guides.
Fox Valley in the spotlight:
This post was slated to be about memory café activities. But through conversation and investigation, I quickly came to the point that what is done at the café is probably less important than how it is done.
Some cafés opt to have a pre-planned format with specific events scheduled, some are purely social, and many are somewhere in between—having occasional guest speakers, music, art, or other projects offered.
Whatever the level of structure, the key to successful café events, according to organizer John McFadden of the Fox Valley Memory Project in Wisconsin, is engagement.
I interviewed John for this post because the Fox Valley memory cafés in Wisconsin have been very successful (eight cafés up and running with good attendance in less than one year) and their approach includes regularly scheduled events at each café.
John says some people are choosing which café to attend based on proximity or the social connections they have made, but others are choosing based on their interest in the specific events scheduled. “We have one couple who never misses a café that has a music event planned,” he says.
But John emphasizes that they are trying to avoid “activities” that rely purely on performance or entertainment, which tend to provide a passive experience for the people attending. “Our goal is engagement,” he says.
Social engagement has been defined as a social group’s participation in activities. Interaction, exchange, and not forcing participation, are key components.
But how do we cultivate engagement, exactly?
As you can see from the below café event announcements in the Fox Valley Memory Project newsletter, the active participation component for each event is planned out in advance:
“Take me out to the ball Game! Come experience seventh inning stretch activities, baseball trivia and share your greatest baseball memory. We’ll have refreshment, door prizes and great conversation!”
“Guess the Object! We’ll be sharing a collection of useful items- some old, some new. The challenge will be guessing what they were used for. Do you have any unique items to bring from home that might stump our group?”
“Sparking Memories with Poetry! Classic poems will take us on a reminiscing and sometimes humorous journey. FUN is at the heart of this program led by Valley VNA. In fact, we may even create our own poem of the day!”
With respect to activity choice, John cites Ann Basting (who developed TimeSlips) on games to avoid: those with letters and numbers and those that are fast-paced. But again he says that even the best intentions can go awry if the engagement component is missing from the plan. For example, several occupational therapy students recently created an interactive game for a Fox Valley memory café, which was supposed to get people talking about their life experiences. But because the focus was on the technical parts of the game and not on how to elicit engagement, the game only lasted a few minutes and did not garner active participation. The engagement plan had not been sorted out beforehand.
Another way to cultivate engagement is to listen carefully to your community and find out how you can support their ideas for activities. In Fox Valley, they have brainstorming sessions with café members to come up with future activities, and, they follow through. A group of gentlemen attending a memory café recently decided they wanted to get together and do something to give back to their community. Café organizers supported their initiative, and now this group gets together regularly to do woodwork—making birdhouses and selling them in town. The group has decided to give their profits to the Fox Valley Memory Project.
This last example reminded me of some advice from Teepa Snow, occupational therapist and renowned dementia care expert: many people find “working” leisure activities more engaging and rewarding. Including such opportunities at the café also fits very well with Emi Kiyota’s emphasis on providing opportunities for older adults to give back to their communities.
Finally, the memory café environment itself can help with engagement by providing a space where people feel a sense of belonging and acceptance that allows them to be themselves in a social setting.
John related this story about a couple who rediscovered their love of ballroom dancing at a recent memory café:
A dance floor was set up after a musical event to get people moving and participating in the music. This particular café had an engaging volunteer who had been a music broadcaster in an earlier era. The tone of his voice and manner of speaking put everyone at ease and really took them back in time. It turned out that a couple attending the café had been avid ballroom dancers in the past, but the husband’s memory loss had brought an end to this very important activity in their lives. His wife was still encouraging though, and prompted him many times to come out and dance during the event. He did not seem interested at first, but then finally, at the second-to-last song of the afternoon, he decided to come out onto the dance floor. To everyone’s amazement, this couple danced up a storm—his ability was still there! His wife had tears of joy streaming down her face as they danced. She was so grateful to experience connection with her husband in this way again—they had not danced together in six years!
What is your experience with engaging activities? Please consider sharing your thoughts here. This kind of information can be especially useful for people who are just getting a café off the ground.
I was very excited to learn that there is a psychosocial ‘therapy’ that is as effective as several Alzheimer’s drugs at improving cognition in a way that also appears to improve quality of life for people with memory loss.
I first heard about this Cognitive Stimulation Therapy, or “CST” from Sue McDermott, the coordinator for close to 30 memory cafés in the Cornwall region of England. She has been encouraging memory café workers there to incorporate aspects of the new therapy into their café gatherings.
Last week I attended a CST workshop in London to learn more. It was led by Dr. Aimee Spector, first author on many of the research publications describing the CST clinical trial results that have come out over the past seven years.
The basic idea behind the therapy is to get people’s minds to be more active and engaged. Although the backdrop for the program sessions involves some standard activities such as current events discussions, physical games, and creative projects, the difference lies in how conversation is stimulated by the facilitators during these activities:
Instead of asking questions that would elicit factual, or well-rehearsed responses, the idea is to ask open-ended questions that spark new thoughts, opinions and associations.
An example might be: If you were in charge of our government’s finances, what would you do? In contrast, a more directed question about a specific financial issue in the news might make people feel like they need factual knowledge in order to participate. Another example from CST is to bring out two photographs and ask what similarities attendees notice between the two. Answers might range from: the subjects are both female, they both have brown hair, they appear to be famous figures, or they are both from England--but all levels of observations are valued responses.
In other words, because the questions are open-ended and intended to elicit opinions or ideas rather than facts, people with memory loss can participate in the conversation at their own comfort level. In essence, people feel less ‘put on the spot’ about coming up with specific information, which can really get the conversation rolling!
In its clinical form, CST is an evidence-based therapy, which has been shown by clinical trial to significantly improve cognition (specifically, it improves language including spoken language, naming, and word finding). The core program consists of 14 themed sessions for groups of 5-8 people with mild to moderate memory loss and is typically facilitated by two health specialists. In one study, Aimee Spector, Martin Orrell, Bob Woods and colleagues found that the subjects’ MMSE cognitive impairment test scores improved by almost 2 points on average following a 6-month extended CST program. While these effects eventually dissipate with progression of the disease, participants and caregivers report improvement in overall quality of life during and following the program. The results have been impressive enough that the UK National Institute of Clinical Excellence recommends the use of CST for people with mild/moderate dementia of all types in the UK. You can read more details about the evidence-based CST program here.
Although it is probably not practical to include CST in its formal format within the memory café venue, it seems worth thinking about how cafés might provide this kind of stimulating conversation informally. Even at café gatherings that do not have structured activities, having awareness about how we engage in conversation may help guests participate more actively. And, this new way of engaging may even be carried over into the home environment through care partners who witness the value of it in practice.
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