“We can only be said to be ALIVE
in those moments when our
HEARTS are conscious of our treasure.”
-Thorton Wilder, The Woman of Andrus
-Thorton Wilder, The Woman of Andrus
I stand watching the darkness settle in. The black dog comes to torture me. Emotions, negative feelings left behind are brought out like dolls in a toy box.
I fight, fight hard not to fall in the abyss. Mask are taken out of their resting place, the mask are for me, which one will I need today. Lies and hurtful memories are resolved or locked away, march before me as if yesterday.
Fighting the darkness med change after med change is paralyzing me. How does my husband stay, never knowing the outcome of each day. The uncertainty of mental illness disrupts every one, every day.
I believe God has a plan, I’m on a journey with no road map. I trust the tools learned over thirty-five years. This to shall pass, not fast enough, never fast enough.
There is a light ahead I can not see, trusting it will come back to me. When the darkness lifts my mind looks for a positive. What is positive about the pain and darkness engulfing me.
The survivor in me knows the light is there, the darkness will lift. I push and push trying to get loose of the anchor holding me down. What others think means nothing to me, I’m fighting my own battle, a battle they can not see.
As the sound of birds return and squirrels play chase, I see sunshine once again.
Melinda
Twenty six years have passed.
When you looked in the mirror what did you see?
A happy man with a fulfilling life?
A man who could not see the illness?
A man who refused to fight the illness?
Your demons staring at you?
Looking in the mirror with no reflection at all?
I looked at the mirror stained with your blood.
M
Knowing my grandparents wanted to die at home was the easiest part of caring for them. The conversation was a common in my gramps family partly because of time the period, the late 1800’s early 1900’s and money.
I now understand the difficulty of making decisions as a caregiver, it’s the decisions on the fly you can’t prepare for. Heartbreaking and so personal but they have to be made, sometimes everyday.
“gramps why give granny her medicine, we know she’s dying, it’s causing her more discomfort swallowing them.”
“gramps you can’t leave the house anymore, granny thinks you left her at someone’s house. She starts hitting her head on wall and wants to die, I can’t manage her anymore.”
“gramps don’t you think it’s time to make calls to give people a chance to see you.”
Caring for my grandparents taught me what I was made of and how strong unconditional love is.
Melinda
Death and taxes are two of life’s certainties. But while we’ve most likely talked to our relatives and dearest friends about money, few of us bring up death — even with the people we’re closest to. That must change, says Pulitzer Prize-winning journalist Ellen Goodman (TEDxBoston talk: The conversation project); as she puts it, we need to bring dying into the open.
Her belief stems from her own missed opportunities. She and her mom had the kind of relationship where they talked about everything — or so she thought. But when her mother became seriously ill and unable to make decisions, Goodman recalls, “I got a phone call from her doctor at the long-term care facility. He said, ‘Your mom has another bout of pneumonia. Do you want her to have antibiotics?’ And I froze.” At that moment, she realized how little she knew about what her mother wanted.
In 2010, Goodman founded The Conversation Project, a nonprofit based in Cambridge, Massachusetts, that helps people talk about their end-of-life plans. Here, she shares how to kick off this critical conversation with someone you love.
Hesitation is natural. There are many reasons not to talk about death, especially the death of a parent. Maybe you’re scared that your mom or dad isn’t emotionally ready to have the conversation. But according to a survey from The Conversation Project, 92 percent of Americans polled said they were eager to talk about their end-life-care.
Perhaps you think talking about death is unnecessary now — your parent is in great health. But, as we all know, death is unpredictable. Goodman says, “It’s best to have these conversations before there’s a crisis, because a crisis is a terrible time to learn.”
Or, you may worry your parent will change their mind about what they want between your talk and when they finally need end-of-life care. But as Goodman points out, “None of this is written in stone.” The point is just to get started.
OK, you’ve accepted that it’s time to talk — but you don’t know how to even begin. Again, this is normal. Goodman suggests a brilliant way to open the conversation. “With children talking to their parents, we find it’s often good for them to say ‘Mom, Dad, I need your help. There may come a time when I need to make decisions for you.’” Why this approach? Goodman explains, “When you phrase it in those terms, it’s a rare parent who will say, ‘No, I’m not going to help you.’”
Another way you can begin: Share a family story. In her time zigzagging across the country for the Conversation Project, Goodman has found everybody has a story — whether it’s about a good or difficult death.
“You can start with ‘Remember when Grandma or Uncle Jeff died. What did you think about it? How would you like yours to be different?”’ says Goodman. “Touching on a familiar experience opens the door to how people experienced it and how people feel about it.”
Pro tip: Blunt is bad.
While there are many good ways to start, please avoid the tell-it-like-it-is approach. Goodman says a sledgehammer statement like “Dad, you know you’re gonna die someday” is a terrible opener. “It just makes everybody tense.”
To guide the conversation, ask your loved one to complete this sentence for you: “What matters to me at the end of life is …”
Possible answers could include:
“Being in the best hospital with the best care available.”
“Being in the comfort of my own home.”
“Having a chance to say goodbye to loved ones.”
“Being assured that all medical efforts have been used to keep me alive.”
“Being assured that no heroic efforts will be used to artificially keep me alive.”
“Knowing that Person X will take care of all my financial affairs.”
“Knowing that Person X will make my medical decisions.”
This sentence can give you an understanding of your loved one’s priorities and concerns, and also point you towards which issues will need to be explored.
Let your initial talk last as long as it does naturally — without your extending it or steering it. According to Goodman, “this usually takes several conversations” to hammer out. Many people may want more time to think about these questions; they might also come up with their own. So how should you conclude this first talk? “A hug would be nice,” says Goodman.
Rather than seeing these conversations as a painful ordeal or a dreaded obligation, try to see them as a chance for you to speak honestly with your loved ones and bring everyone’s worries out into the open. “People are so anxious about having the conversation,” reports Goodman. “But once they do, the huge majority will say, ‘It’s the best conversation we ever had. It was real, it was emotional, it was talking about things that matter.’”
These talks are a gift we can give each other, says Goodman. By having them, she says, “it’s not that everything will go perfectly at the end of your loved one’s life, but you will know you did the best you could.”
For more advice, check out the Conversation Starter Kit on The Conversation Project website.
Watch Ellen Goodman’s TEDxBoston talk here:

How parents of teenagers can manage their fears.
All parents worry about their children’s well-being at any age, but the issues to worry about mount when children hit the teen years. I am often asked by parents of one child about how to deal with the anxiety they feel. With one child the focus can be more intense, however a parent’s anxiety, upset, or despair when something goes amiss is the same no matter how many children there are in the family.
Parental anxiety is readily absorbed by children and not helpful as teenagers navigate their more complex world—facing more temptations and risks then they did as young children.
I asked my colleague, Dr. Alice Boyes, author of The Anxiety Toolkit, to recommend ways that all parents can tamp down the anxiety they feel as their kids enter the teen years.
7 Ways to Cope with Anxiety about Your Teen
1. Whether you have one adolescent or several, first, be compassionate with yourself about your feelings. There’s no need to beat yourself up about the fact you’re worried. You want to keep your child safe and that concern is bubbling over as anxiety. That’s very understandable and relatable.
2. Confront your specific fears. For instance, do you fear your child will die in a car crash? Is your fear that your child will do something stupid and get arrested? Once you identify your specific fears, gather some “base rate” data on how likely those things are.
Don’t spend hours researching; a 5-minute Google search will usually give you helpful information. For example, a World Health Organization report indicates that the death rate for adolescents aged 10-19 in high-income countries is about 10 per 100,000 in any given day, so around 0.001%. The report also breaks down the major causes of adolescent death and serious injury in those same countries.
The facts make it clear that your son or daughter is unlikely meet harm in this way. While confronting your specific fears might make you more anxious in the short-term, it should decrease your anxiety overall.
3. Once you’ve looked at what the most realistic worries are, identify what you can do to lessen those risks. For example, for male adolescents in the 15-19 age group, road injury is a realistic concern. Perhaps you could schedule a driving lesson every 3 months for your child even after they get their driver’s license so that the instructor can catch any bad habits your teen might be slipping into. The paradox of excessive worry is that it’s paralyzing, and can make people less likely to take the practical steps that would lessen the risk of whatever they’re anxious about.
4. Take practical steps, but don’t go overboard. You might decide to plan or implement one risk reduction strategy every month. Try to start with the things that worry you the most, even if they’re things you’re tempted to avoid such as talking to your adolescent about sexual consent or alcohol and other drug use.
article continues after advertisement5. Keep in mind that while a catastrophe is unlikely, it’s more likely that you and your adolescent might need to deal with a mildly to moderately negative situation, whether it’s bullying, failing to make a sports team, or test anxiety. The best approach to concerns like these is to briefly imagine how, in practical terms, you’d cope if one of them occurred, and that could include getting support for yourself or for your teen.
Reassure yourself that you have the capacity to cope with these sorts of circumstances. Although they would be emotionally difficult to deal with and you might not feel 100% confident or get it 100% right, you’ll be prepared to successfully navigate challenges.
6. You can probably easily think of the risks of being under-protective. In addition, think about the potential costs of being over-protective. By being overprotective you impede your teen’s desire for independence or you can raise a teen who feels stifled and leans on you for every little thing. Write down some of the things you do because of your concern. How might you pull back or at the least, strike a balance?
Whether or not your child has siblings to share the rocky road of the teen years, a child needs to explore and make mistakes to learn and grow.
7. Acknowledge anything that’s going on for you related to your child getting older. Are you concerned about how your identity will shift as you transition to being the parent of a teen rather than a young child? Make sure worries that relate to you aren’t getting unconsciously mixed in with your anxiety about your child’s safety. Acknowledge your own emotions and thoughts without judging them.
article continues after advertisementAlso of interest:
The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes (or Ad Hoc Committee) is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.
In 2017, members of the Ad Hoc Committee met with Dainius Pūras, the United Nations (UN) Special Rapporteur on the right to health and Dr. Shekhar Saxena, the senior WHO official responsible for addressing dementia to discuss their findings from the Report, UPDATING ICD11 Borreliosis Diagnostic Codes, Edition One (March 29, 2017) and entered many potentially fatal complications from Lyme borreliosis into the WHO ICD11 Beta Platform. Many persons in the UN system have friends and family devastated by this disease.
The ICD11 codes now recognize: 1C1G.2 Congenital Lyme borreliosis; 6D85.Y Dementia due to Lyme Disease (Dementia due to other specified diseases classified elsewhere); 8A45.0Y Central Nervous System demyelination due to Lyme borreliosis (Other Specified white matter disorders due to infections). There is additional flexibility under the ‘Coding Note’ for Lyme borreliosis to ‘use additional code if desired, to identify any associated condition or sequelae’ and use the ‘extension code ‘Cause of late effect’ (in addition to both codes) to show the relationship between the causative condition and the resulting sequelae’.
ILADS members who contributed to ‘ICD codes report’ are Jenna Luché-Thayer, Leona Gilbert, Richard Horowitz, Kenneth Liegner and Mualla McManus.
The Ad Hoc Committee’s 2018 report, ‘The Situation of Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients: Edition One’also emphasized the need to change these ICD codes. ILADS members Jenna Luché-Thayer, Robert Bransfield, Joseph Burrascano, Mualla McManus, Jack Lambert, Kenneth Liegner, Christian Perronne, Ursula Talib and Armin Schwarzbach contributed to the ‘defenders report’ that was entered into UN record in 2018 by Michel Forst Special Rapporteur for the situation of human rights defenders and reviewed by the Special Rapporteur on the right to health.
Joan Doucette was sipping coffee in a small café at MIT, her bicycle resting next to her. The Institute tends to frown on bringing bicycles into buildings, but only a hard soul could have stopped Doucette from wheeling in hers, with its ribbons streaming from the handlebars, white tires and a front basket filled with yellow and pink flowers.
The demeanor of the 75-year-old cyclist was just as sunny. Doucette peered up from a travel itinerary for a trip to Chicago. “There’s going to be 20 of us going,” she said. “We’re going to take a river trip. We’re going to go to the museums … then we’re going to the Russian tearoom. We’ve got a tour of the skyscrapers. And a lot of us are going to the Frank Lloyd Wright house. So, very busy.”
Doucette spoke with an English accent redolent of her native Surrey, where she was born in 1938. As a young woman, she was a nanny and became involved with the US embassy, which assigned her to foreign posts where she cared for diplomats’ families. When the father of one of those families died, she moved with the mother and kids to Massachusetts. “I was their nanny until I married and their mother remarried,” she said.
In 1970, Doucette began a career at MIT, moving among the Institute’s libraries, alumni relations department, Center for Transportation Studies (now the Center for Transportation and Logistics, home of the AgeLab), industrial relations, corporate development and more. She retired at 62, after having worked at MIT for 25 years. “What am I going to do with my days?” she wondered. The answer that presented itself seemed opportune at the time. She had no idea how revolutionary it would become.
Doucette and her husband moved to an apartment on Beacon Hill, one of the oldest areas in Boston. She didn’t know anyone there and worried about her social life. Then she received an invitation to join the Beacon Hill Village. But it’s not a village per se. It’s a loose confederation of older people who live on Beacon Hill, who, instead of moving to a community or facility devoted to old age, want to stay in their own homes, interact with their friends, eat at their favorite restaurants, and attend their favorite cultural events.
Many of the Village’s founders had seen elder care gone wrong and were resolved to find a better way. “Each of us had witnessed firsthand the distress our relatives experienced as they aged: a mother in a retirement community in Florida who felt lonely and abandoned; a parent in a nursing home, marginalized and overdrugged; an uncle with very limited means and no immediate family to help out,” founding member Susan McWhinney Morse has written.
n 1999, when the Beacon Hill neighbors began to consider creating something different, the story pervasive in the culture was clear. When you grew old, there was only one thing to do: move, whether it was to an independent or assisted living facility, country-club retirement community or nursing home. The neighbors were determined to tell a new story.
The Village’s members agreed to help each other with the small things that come up and to help each other find assistance for the big things. Today, in exchange for annual dues of $675, the Village offers help with tasks like grocery shopping, pet care, light housework and small repairs. For issues that pose a greater challenge — including health, caregiving and financial needs — the organization curates lists of trusted service providers, who sometimes even give member discounts.
The Village also provides access to vetted drivers trained in transporting elderly people who need special care. “They’ll take you shopping for your groceries. If you’re having an operation, they’ll come and pick you up and take you home,” said Doucette. “When I had the new knee put in last September, somebody came and picked me up.”
Perhaps the most essential aspect of life in Beacon Hill Village is what might sound like the least important: the fun. Doucette and her husband joined when the Village first opened to the public in 2002 and began building out its membership base as well as relationships with vendors, providers and contractors. Doucette helped build its social schedule, which, these days, is full.
“On Mondays we have a movie group that come in my house, and we have tea, and I stream a movie. And there’s about ten of us do that. And on Tuesdays, twice a month, there’s another group that meets down at 75 Chestnut” — a snug Beacon Hill restaurant — “and we talk about anything we want to, mostly about theater and movies,” she says. “And that’s called Terrible Tuesdays. And then every Wednesday a group meets on Charles Street in one of the restaurants there. And we talk world affairs mostly . . . And then on Thursdays I got my husband to go and do First Drink, because that’s for the men.” Doucette’s groups are so popular, she says, that she’s started to set up satellite gatherings in other parts of the city.
My immediate response was skeptical when I heard something special was going on across the river from my MIT office. Older people helping each other sounded great in theory, but I wondered how long such an altruistic collective could last. What I found: The Beacon Hill philosophy has not only endured; it’s spread. In the US, the Village to Village Network facilitates the development of Beacon Hill-esque communities. According to the Network, there are at least 190 villages built on the “Beacon Hill model” in all but four states, with 150 in development.
One 2014 study found that a quarter of Villages along the Beacon Hill model are actively working to improve their communities’ attitudes toward older adults. Every day, by going out and creating a positive impression on the people around them, the members of Beacon Hill and other Villages dispel the old myth that elders are unfit to co-mingle with society.
As new Villages have sprung up, several themes have emerged. One is the development of a pay-it-forward ethos. Paid staffs tend to be small, averaging between one and two-and-half full-time employees, so the majority of what Villages provide their members comes from volunteers, most of them members. They’re typically younger and healthier — people in their 50s, 60s and 70s — who provide occasional care to older members in their 80s and 90s. This care isn’t medical or care with the activities of daily living, which usually requires help from professionals or family members. Rather, Villagers assist each other with the issues that come up over the course of a full life.
At the San Francisco Village, member Bill Haskell said he had joined hoping to “pay it forward” to the local older community. “Within 30 days, my partner found out he had to have open-heart surgery. So we needed not to volunteer, we needed help. I needed a lot of help because I’m his primary caregiver,” he said. “Bob had a difficult surgery with a lot of complications. He was in the hospital for two weeks” — far longer than the expected three days. “Then there’s the home period.”
The Village provided Bill with vetted referrals for home care. For times when he needed to run out to the store or the gym, it sent a volunteer to sit with Bob. “People who are members brought over meals when I couldn’t cook any longer,” Bill said. “People we didn’t know brought over dinner for us.”
As appealing as this pay-it-forward mentality may sound, there are drawbacks. For one thing, it’s hard to market. Beacon Hill started as an organization devoted to mutual care and later took on its social-club vibe. The intrinsic focus on care can scare off potential members who don’t think of themselves as patients.
Beacon Hill also doesn’t offer an entirely coherent solution to the problem of identity in retirement. But in many ways, this is a feature, not a failure. Beacon Hill embraces complexity. Members are free to not just pursue a leisure-oriented idea of retirement but other aspirations, including caregiving, interacting with other generations, patronizing cultural institutions, volunteering and working.
If Beacon Hill’s embrace of complexity over clarity makes sense for its members, it also poses a liability in terms of defining a new way of life in old age. It’s hard for its subtle, complicated message to compete with the volume, vividness and simplicity of that broadcast by traditional senior communities. However, Beacon Hill could fight back by doubling down on its own model and offering more services and activities. Increasing its number of social events might allow those in the midst of a transition away from a primary career to wrap themselves in new interests. And a wider variety of workshops, classes, clubs and volunteer jobs would increase its visibility — turning Beacon Hill into, well, a beacon on a hill.
The barrier to achieving this kind of scale is considerable. Joanne Cooper, part of the membership committee at Beacon Hill, said bringing in new members is a challenge. “Two new members come in, four leave, one way or another,” whether they’re “moving to a more structured setting or, unfortunately, passing away.”
The relatively new San Francisco Village has 300 members. Nationwide, said San Francisco leader Kate Hoepke, Village memberships can be measured in the low tens of thousands. “You know, it should be ten times that many.” She wonders if the issue is a lack of funding or visionary leadership. The Village to Village Network’s pattern of growth — fast to spread across America and the globe, yet slow to flourish in sheer membership — might come down to the fact that “so much has happened in such a short period of time. That infrastructure isn’t there yet.”
If you, like me, want to live in a world where older adults and their kids aren’t antagonists but invest in each other, work for each other and help each other, then the Village movement is a good guide to follow. The Beacon Hill model is finding fertile ground in countries such as the UK and Germany. Other experiments in age integration are springing up as well. One program in Germany and Switzerland, Wohnen für Hilfe or Housing for Help, subsidizes the rent of carefully screened students who want to live in older people’s homes and help out with minor chores. The UK has a similar program called Homeshare. A law in Germany provides the 82 percent of elders who say they do not want to live in a nursing home with a grant of up to €10,000 to establish shared, community apartments, with a monthly subsidy of up to €200 per tenant.
The Beacon Hill Village and others like it aren’t perfect. They’re small, and they don’t leverage mobile technology as well as they could to improve connectedness. They’re limited mainly to urban areas, and they tend to skew middle-class-and-up, leaving people out. Still, as new generations of longevity-economy products make it easier to do more in old age than merely recreate and relax, it’s easy to envision something resembling the Beacon Hill Village emerging from our current state of frontier chaos.
Excerpted from the new book The Longevity Economy: Inside the World’s Fastest-Growing, Most Misunderstood Market by Joseph F. Coughlin. Published by PublicAffairs, an imprint of Hachette Book Group. Copyright © 2017 Joseph F. Couglin.