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I posted recently about a Johns Hopkins study on aging senior citizens: For Older Adults, Participating in Social Service Activities Can Improve Brain Functions. Today's story is about a man who could be Exhibit A for this point: local hero Al Armenti.
Al is well-known in his home town of Concord MA. Well into his 90s, he is very active in many social service activities, in his church (First Parish in Concord, a Unitarian Universalist congregation), and in music circles. He is a combat veteran and has been a peace activist for decades. Recently, I received an email from Al reporting on his participation in the St Patrick's Day with the Veterans For Peace. He writes by way of explanation that "As a long-standing member and, because of my age, I was allowed to ride in the back seat of an open convertible." That's okay, Al, I hope that if I am still fighting the good fight when I'm nearly 100, someone gives me a ride in the parade, too.
Although it seems that Al has been a dedicated member of Veterans For Peace for since the Revolutionary War, his participation is somewhat more recent. This is not a small commitment: a few days before the parade, Adrian Walker wrote a column in the Boston Globe about VFP's efforts to march in the traditional St Patrick's Day parade: Antiwar Veterans Group Battles to March in St Patrick's Day Parade. Al also sent along a video of the event (he appears in the red convertible toward the end).
The picture above at the right is Al playing his mandolin, which he still does in public. One of his favorite songs is Pete Seegar's humorous My Get Up and Go Has Got Up and Went. Delivered with a twinkle in his eye and an engaging smile, the song as Al sings it is clearly ironic. His 'Get Up and Go' is doing just fine.
So here's to you, Mr. Armenti! You aren't old - you have just been young for a very long time!
Karen Tannenholz works in our office, and last summer she faced the kind of sudden medical emergency we help many people through. Stressed families often imagine their circumstances are unique, but Karen’s story reveals threads common among many: feelings of growing confusion, helplessness, stress, anger, and even humor are all normal. Ultimately, deeper appreciation of each other can emerge as we navigate together through some of life’s most difficult passages. To hear Karen’s story, click 'Read More' below:
My mother is 79 and my stepfather, 87. They have battled Dad’s Parkinson’s for 11 years, but it was only after my parents moved to Connecticut in 2004 that we learned that Mom had been calling paramedics each time my stepfather fell. She had been getting up six times each night for months to help him to the bathroom. They needed help, but my brother, sister, and I didn’t know how to give it.
We watched as medical conditions worsened for both of them. Money management became difficult. But at that time we didn’t know how to get information from doctors, talk to visiting nurses, decipher Medicare, and handle legal issues. We finally put aside feelings of guilt and stepped in – not only to maintain life quality for our parents, but also to preserve our own emotional and physical health.
After my stepfather broke his hip in 2010, my parents hired daytime caregivers. But my mother still became house-bound, feeling that she had to be with her husband. I helped around the house and tried to tactfully suggest practical solutions. She wouldn’t accept them. As our concerns mounted, my brother, sister and I began to talk daily. While my brother handled legal and financial issues, my sister visited and took her out for lunch. I joked with Mom that putting the three of us together would create the perfect child. But I didn’t feel like a child anymore.
Then as I visited last summer, Mom frantically called my name one night. Dad was delusional. Still in bed, he had a tight grip on her wrist and was yelling that we were trying to kill him. Mom told him that he was having a bad dream, but he slapped her in the face. He had always been gentle, and I realized that he was not only delusional, but terrified. I wanted to call 911, but she told me they had an emergency plan in place and I should call hospice and get the medicine they had left her. As Dad continued yelling, I dashed down the hall, angry that I had known nothing about her plan before this happened.
We gave him a tranquilizer, and I spoke to him calmly, saying he was safe. As I searched for soothing music on his TV, he began calling out random channels,”66, 24…53!” Overwrought and exhausted as I was, the absurdity of those numbers nearly caused me to burst into hilarious laughter. Finally, as the tranquilizer took effect, Mom and I turned out his light and sat listening in the next room, hugging each other. The incident had lasted two hours. We decided not to remind Dad of what had happened.
The next morning, we met with their hospice nurse and social worker. When asked if we needed 24 hour care, my mother and I answered, “No” and “Yes”, at the same time. I looked at her and explained, “Mom, he wasn’t hurting YOUR mother.”
The next two days were a blur. Despite my mother’s objections, and telling her I was going out for medicine, I stopped to meet their lawyer, see a nursing home and get medical consent forms for my sister and me. I got advice from my coworkers and typed out a contact information sheet for caregivers and family. I fired one caregiver who had not cleaned Dad nor transferred him properly, and found a local family-run care agency to provide 24 hour care. I couldn’t think clearly for the next few days.
My parents slept soundly through the first night of live-in care. They, and we, are happier and calmer. Their caregiver is now part of our family and Dad no longer needs hospice care.
Last month, I teased him, saying that his heart-shaped pillow was very romantic. He leaned over, asking Mom, “Is Karen leaving now?” Mom answered, “No, of course not.” He stage whispered, “I mean is she mentally leaving us?” He still shares his dry sense of humor, only he speaks more slowly. I kiss him and say “I love you” often and now have a deeper relationship with my parents. We have shared this struggle and found answers, together.
And so it is with many families. A difficult passage, to be sure, but with patience and love it can be a blessing nonetheless.
Concord Park in West Concord, MA announced the opening of The PhotoVoice Project, a distinctive exhibit featuring the photographs and writing of older adults living with memory loss (see video below for a view of last year's exhibit in a sister community in Hopkinton, MA).
The Opening Reception for the exhibit is Thursday, November 29, 2012 from 4:00-7:00pm at Concord Park located at 68 Commonwealth Avenue, Concord. The public is invited to attend to view the works and will have an opportunity to meet the artists.
The PhotoVoice Project was developed by several researchers at the University of Michigan to enable individuals with disabilities to identify, represent and articulate aspects of their lives by working with cameras to capture images of interest and then giving meaning to those images through words.
Senior Living Residences, the Boston-based company which manages the daily operations of Concord Park and created Compass Memory Support, is the first assisted living company in the United States to adapt this program for individuals living with different types of dementia. Exhibiting the work at the end of the six-week project in a public space creates a forum for dialogue, awareness and solidarity with individuals living with memory loss who are often isolated and misunderstood by society.
According to Mary Baum, Compass Program Director at Concord Park, “We are excited about the ways in which the PhotoVoice Project is positively affecting individuals living with memory loss. This unique project increases engagement, improves mood, and offers our residents a pathway to tap into emotional memory and the rich history and identity of their lives. Exhibiting their work allows the general public to move beyond the stigma of Alzheimer’s disease to see the person who is still there, who still has so much to offer.”
She added, “The enormous positive impact of this program on the lives of individuals living in Senior Living Residences’ communities is reflected in the words of a woman at one of our sister communities who said, ‘Thank you for bringing the world back to me.’”
Compass Memory Support programming treats the symptoms of memory loss. Through an affiliation with Boston University School of Medicine’s Alzheimer’s Disease Center, Compass puts research into action through social engagement, lifelong learning, physical fitness, the arts, and an award-winning Brain Healthy Cooking Program. Ms. Baum said, “We believe individuals with memory loss should have the fullest possible sense of control over their daily lives, continue to learn, enjoy personal relationships, play a role in their own care, and live meaningful lives. The PhotoVoice Project is one way we achieve these goals.”
Concord Park is located at 68 Commonwealth Avenue in Concord. For more information, visitwww.concordpark.net or call 978.369.4728.
“So what’s it like to ride 100 miles with 4400 feet of vertical climb on a really hot, humid day in July?”
That’s the question I heard most often following Saturday’s Alzheimer’s Memory Ride. And I'd like to answer it here: like many athletic challenges, the key to success is psychological – you have to be crazy! Fortunately, I was the right man for the job, and was joined by more than 50 similarly-minded folks. I’m not a skilled cyclist – Concord has dozens of people who ride faster and farther and more challenging routes than I do – but I do it enough that I knew I’d be fine, and I really enjoyed the ride.
The best part of the day was simply being with so many other people who were happy to be helping others. There’s something about the spirit of working together to help that is enlivening for me. I am so naturally self-absorbed that I can easily focus on my own circumstances, but when I do something to help out, the spirit of gratitude and service that I see in other people infects me. So that made the entire event a joy – especially since so many friends had donated generously. THANK YOU to all of you!
In fact, it was so much fun that Debbie Bier (the Concord office director, Dr. Deborah Bier) and I will form a team for the Alzheimer’s Memory Walk in September. That’s not a physical challenge – about 3 miles. The point is to raise awareness and money to help fight a disease that’s hurting a lot of people. If you’re interested in joining the team, let us know. You will have a lot of fun with lots of great people.
We got off to a 6:30AM start. That was smart because we got in several hours of riding before the sun really got bad. As we pulled out of the parking lot, another rider recognized me from the Concord Journal article. I was glad to see that; much of the challenge we face now is awareness, and knowing that others saw the article helped to confirm the effort.
The first leg included lots of collegial chatting among cyclists – swapping notes about where we’re from, where we enjoy riding, other fund-raising rides. Really a nice leg of the trip. We circled down around the Wachusett Reservoir, and from that point I was on routes new to me. The scenery was gorgeous and I was struck again by New England’s beauty. As a native Floridian, I love the change of seasons and the variety of landscape here. But man – it was muggy! Even at 22 – 25 mph, the sweat didn’t seem to evaporate. But at least it was overcast to that point. I knew that wouldn’t last, so I counted my blessings and looked at the farms and rolling hills.
At the rest stops I wrote a Facebook post for any donors or others who’d expressed support. That was fun, but I tended to stiffen because of the long stops and the first 5 – 10 minutes after re-starting made me groan a bit.
Then the sun came out. About that time, I got lost. I had fun laughing at myself – who else would go on an Alzhiemer’s ride and get lost?! You guys will be riding for me before long (and joking aside, 10 million baby boomers will get Alzheimer’s – this is serious business). Local cyclists pointed me the right direction and I got back on track, 4 miles later. Oh well. You just pedal ’til you get there. But it was sure getting hot!
By the last legs the riding conditions were not pleasant anymore, but the people were still great and we’d been riding together now for 5 hours. You’d encounter the same folks at different points, depending on how long someone stopped or who went faster on a given leg (or who got lost). I made some friends and was enjoying the day. Whoever said, “It's not the heat – it’s the humidity” wasn't a cyclist. Some of us formed a pace line on the last two legs, which helped both physically and psychologically.
By the end I was a happy camper and looking forward to some ice cream. My wife Diana and my kids Julia and Liam were really kind and came out on a hot Saturday for the finish line. Debbie Bier also came with her husband Rich Stevenson. I really appreciated all that support, and after a lunch of Red Bones barbeque (a local favorite, for readers who may not be from around here) and a 5 minute massage, we headed off to Bedford Farms for ice cream.
All in all, a wonderful day. And again – THANK YOU to all who donated, and to those who help spread the word. The cure for this disease does not appear to be around the corner, so we have a lot of work to do -- and a lot of people to support while it is found. Working together, we can do it. And at the end of this day, having worked together with all who rode, or volunteered, or donated, or spread the word felt just great.
This is what it's all about! On the heels of our 100-mile Alzheimer's Memory Ride fund-raiser, here is the story of a man whose efforts cast ours in a pale light. Carleton-Willard Village resident Bob Sawyer of Bedford, MA, is an active cyclist approaching 90 who might easily have given up when his health declined.
But he didn’t, and those around him didn't, either. In a recent article in the Boston Globe, Sawyer’s physician describes his “recovery as a case in which the presence of friends, the efforts of medical professionals, and the patient’s inner drive conjoined to turn a dire situation around.”
Sawyer was hospitalized with lymphoma, compounded by pneumonia, and had stopped eating. But the former competitive cyclist says he reached a point "when I felt like I had to make a decision. Can I make it back? Do I want to lie here like a vegetable for a year? So I said, ‘I’ll have some breakfast. ..."
The decision can be that simple. The road to recovery may not be - it surely wasn't for Sawyer - but the turning point can be no more complicated than "OK, I'll try it. I'll eat meals, take meds, and try to enjoy life."
And look at Bob! Sawyer is not a CCC client, but he displays the drive and the engagement we seek to foster. In May, barely a year after being released from Lahey Clinic, the 88-year-old participated in the annual Connecticut Senior Games and earned three gold medals for his age group: 5K time trial, 10K time trial, and 20K road race. Talk about recovery!
This story is not only inspiring, but instructive. We often talk about "Reinventing Massachusetts home care for the 21st Century." One of our core tenets is that older age is a phase of life but not an illness. We work to re-engage our clients’ passions as a route to improved quality of life. Time and again in our own clients we see stories like Bob Sawyer’s – not as dramatic as his, to be sure, but nonetheless personally transforming. Re-engagement in life's passions cannot of itself overcome debilitating illness, but it can change the attitude and the experience of client – sometimes with miraculous results.
We work hard to build attitudes of active engagement and positive energy in our caregivers and our caregiving. We find that it improves the quality of our care, and the quality of life in our clients. Stories like Bob Sawyer's are dramatic examples of why this is so important.
I had lunch with my mother at her home earlier this week. She also invited Tillie Sweet, whom I know from Concord's Medical Reserve Corps, but hadn't seen for quite some time. Tillie is a registered nurse who's had a varied and fascinating career, and it was a delight to see her again and to hear her stories.
It turns out that Tillie had been a part of early innovations in home care. She told us that around 1981, she answered an ad from BayPath Elder Services. They were looking for their very first RN to be part of a brand new, innovative program. Those crazy kids were going to try to keep seniors in their houses and out of nursing facilities by delivering personal care and homemaking services right where they lived!
And you know what? It worked! They found that para-professional services could successfully come right to people's homes. Seniors could enjoy their familiar surroundings, receive the help they needed right at home, save money over the cost of an institution, and continue to live out in the community and not in a nursing facility. This system is now known as "home care."
And here we are today at Caring Companion, just about 30 years later, continuing to blaze trails in home care by adding technology and wellness activities in innovative, cost-cutting and humane ways. I was so thrilled to hear about "the old days" from an early adopter like Tillie, and to learn about a part of her life I hadn't known. I'm proud that we're continuing to advance our field with "thinking outside the box" programs and services. Hats off to Tillie and her fellow early innovators -- we have some big shoes to fill!
The post below is adapted from an except of our white paper, Re-Imagining Home Care: New Needs, New Approaches. This is the 2nd in a series of of 11 posts.
Ted and his wife Marian – everybody called her "Mikie" – retired to Cape Cod in the 1970s. In 1984, at only age 60, Mikie was diagnosed with terminal cancer. Its progress was quick: she received home medical care from visiting nurses, but within six months, with her children at her bedside, she died.
|An increasing number of home care clients
Home care aides were soon back at the house, however. Years earlier, a stroke had left Ted with limited mobility. He was able to walk with a cane, and even to drive short distances; he could manage through a day. Now a widower and alone, he declined noticeably and was in a wheelchair within a year. So after a family conference, the home care aides returned: twice daily visits for meal preparation, medications, grooming, hygiene, and related needs. But Ted spent his days in his wheelchair watching TV reruns. His adult children, with jobs and families off the Cape, visited often and managed his care from afar, but they were sometimes unaware of changing needs or significant events until they came for weekend visits and read the care log kept on the kitchen counter. Otherwise reasonably healthy, Ted’s daily routine did not change much until he entered a nursing home 16 years later, in 2000.
Ted and Mikie were my wife’s parents, and they represent the different needs of what I have called the 20th Century and 21st Century home care clients. This is, of course, a gross simplification, but it helps to frame the discussion of the changing requirements of a growing percentage of the home care population, and it points to the entirely valid reasons that home care agencies developed with a different set of target clients and needs as their focus.
Ted languished in a system designed to care for Mikie. He was unable to, or chose not to, reengage fully with life as the depression of a lost spouse combined with the lingering effects of his stroke to isolate and immobilize him. The availability of care was not an issue, but the two daily visits from a home care agency focused on medical needs and basic bodily functions rather than on reengaging him with an active life or communicating with the family. Concerned adult children could only monitor from afar, and he declined.
The lost opportunity to improve Ted’s life resulted not from neglectful agencies, incompetent staff, or uncaring children. Good people did what they were trained and knew how to do. But the system was not designed for people like Ted – and today, the percentage of Teds in a typical home care agency’s client census is significant and growing.
Developing new approaches to support long-term home care for older Americans is one of the key challenges of 21st Century health care. The remainder of the this series expands on changes in service operations and technology implemented at Caring Companion Connections to address these needs. We have found that re-imagining home care -- thinking of our clients differently, and re-defining how we use technology, for example -- fundamentally changes our service and improves our clients' outcomes.
The passage above is an excerpt from the introduction of a white paper describing our innovative strategy for 21st Century home care. We will publish the remainder of the paper in a series of posts over the coming weeks. This is the 2nd of 11 planned posts.
Readers wishing to read the complete white paper, click here.
I read your article online about normal forgetfulness and wanted to ask where you would turn if you were 44 and worried about this. I do live with quite a bit of stress (divorce, own business, a somewhat mentally abusive boyfriend, etc), and have always been a multi-tasker who doesn't like to focus on details. Since high school, I've been awful with names and memories of long term events.
So it didn't concern me when my boyfriend became concerned I didn't remember seeing a movie (I slept through it), or that we discussed something. We had a rocky relationship and I thought he was excusing his behavior. Recently, though, I had an intern work 3 months for me, and when a month later I tried recalling his name, I could not for the life of me remember until I looked it up. If you think I should worry? I've mentioned this to my primary and they excuse it to juggling.
On the bright side, I've noticed I am able to remember more things now that I've left the boyfriend, but I want to double check... Thank you!! -- Signed, Worried
Now, I can't diagnose and I'm not a physician, but I think you said a few key things here.
1) You have had this problem for ~30 years; though it perhaps has gotten worse over time it's not otherwise different
2) You remembered you had an intern and recalled the name once you looked it up (and you knew how to find the info)
3) You have experienced improvement with lowered stress
To me, these lean toward normal forgetting. Your physician may be right. However, what has not been addressed by your inquiries to your doctor are:
1) That this impacts your daily functioning
2) How to strengthen these areas
3) How much it causes you concern
That less stress helps you makes me think that more tools for handling stress (since we can't make it all go away, though it would be nice if it would) might be additionally helpful to you. Mindfullness or meditation training may help -- look at the community education offerings at local hospitals or through continuing or adult ed listings. Pamela Ressler, RN of Stress Resources in Concord, MA is an expert in this area, and offers both group and individual training.
Note: The following was published in our monthly column "Living and Loving: Elder Care in the 21st Century" in Gate House News' Concord Journal
Aging has changed during the past generation. From an elderly woman choosing to live alone in Belmont, MA rather than enter assisted living, to a Concord wife with mild dementia struggling to provide senior care for her ailing husband, to a Bedford couple in their 90s and still home with outside help, we see many more families with elders who have moderate to significant needs. Those terms of care can stretch into years.
This requires a change in attitudes and expectations for families to reduce their stress. It’s necessary to reset our expectations and assumptions that result from such widespread changes. Let me illustrate with a story.
Ted and Mikie
Ted and Marian – everybody called her “Mikie” – retired to Cape Cod in the 1970s. In 1984, at only age 60, Mikie was diagnosed with terminal cancer. Its progress was quick: she received home medical care from visiting nurses, but within six months, she died with her family at her bedside.
Home care aides soon returned to the house, however. Years earlier, a stroke had left Ted able to walk with a cane, and even to drive short distances, but his mobility was limited. Now a widower and alone, he declined noticeably and was in a wheelchair within a year. So after a family conference, the home care aides returned: twice daily visits for meal preparation, medications, grooming, hygiene, and related needs. Ted spent his days in his wheelchair watching TV reruns. His adult children, with jobs and families off the Cape, visited often and managed his care from afar, but were sometimes unaware of changing needs or significant events until they came for visits and read the care log kept on the kitchen counter. They found that the sustained high level of care and time they had given during Mikie’s illness was impossible to sustain forever. Sixteen years later in 2000, a daughter residing in Vermont moved Ted to a nursing home a few miles from her house.
Ted and Mikie were my in-laws, and they represent the different needs of what I call the 20th Century and 21st Century home care clients. This is, of course, a simplification, but it helps to frame the discussion of the changes today’s families face, compared to those of earlier generations.
It is usually impossible to deliver the level of care – in terms of hours, energy, dollars, and overall family resources – that Mikie received when a parent is in Ted’s situation. Part of the path to finding a workable solution is understanding what is possible for you to deliver given your current life situation. This involves a balance of understanding the sacrifices you are willing to make, the limits you need to set, and the help that is available from others.
Sacrifices – Many of us are surprised when we realize that we will have to devote time and money to the care of our parents, though it’s not as if we hadn’t noticed they were getting older. But unlike raising our children, we often find ourselves unprepared mentally for the significant work before us on behalf of our parents. Make a mental adjustment – like other parts of family life, this will require devotion of time, money, and emotional energy, but it can be very rewarding.
Setting Limits – the flip side of being unprepared is to assume the burden of relieving all “the thousand natural shocks that flesh is heir to,” in Hamlet’s words. We in the sandwich generation can run ourselves ragged – and the devotion of many adult children is often touching – trying to help our parents. But we cannot stop time or its effects, or meet every need or request from a parent. In the hurly-burly, it is sometimes useful to step back and examine your own life, to understand what resources you have, and realize that you can give a certain amount – but then you must stop. This is not neglect, but simply a fact of life.
Ask for Help – family, volunteer, or professional. This can be difficult, but even if your parent prefers that you or your siblings cover every need, it may not be possible. As they say in an airplane, “Put on your own oxygen mask first.” You are no good to anyone if you collapse in exhaustion. Ask a friend, or a local faith community. And if financial resources are available, use them. They were saved for a rainy day, and if that time has come, be thankful for your family’s foresight and use the funds.
None of this is to suggest that achieving balance is easy. But understanding that your parents may need your help almost as long as your children do is a mental adjustment many of us need to make. Understanding the territory and the choices can provide some much needed stress relief.
The upcoming film, Last Will and Embezzlement, starring Mickey Rooney and a host of legal and elder experts, will shine a light on the huge and growing problem of financial abuse of elders. The movie-makers' hope is to help those who have potentially-vulnerable adults in their lives to be on the look-out for signs of victimization, and maybe even make some waves in the communities where the rights of these citizens are not being looked after and protected by the public servants and law enforcement officials who are charged with that responsibility.
Mickey Rooney himself is a victim of financial exploitation by a family member. Rooney testified before the United States Congress when they were considering legislation meant to curb elder abuse. In this film, he shares own own personal experience. Below is the movie's trailer.
Course instructor Deborah Bier, PhD (photo, below right) has been a health care educator, author, and wellness coach for over 20 years. She holds a doctorate in therapeutic counseling, and has helped hundreds of individuals and families to live better with chronic illness and disability. She is the director of the Concord, MA office of Caring Companion Home Care. (www.CaringCompanion.Net) and has lived in Concord for 30 years.
Middlesex Community College's MILES Program (Middlesex Institute for Lifelong Education for Seniors) offers intellectual stimulation, interaction, and friendship for adults ages 50+. Some of the topics explored through MILES include history, politics, arts, fitness, health, safety, music, computers, internet, travel, business, psychology, law, poetry and opera. Courses have no term papers, exams or grades, and are held at their Bedford campus. They are facilitated by individuals with expertise in topics based on professional, educational or personal experience. Semester membership fee of $95 includes access to all MILES courses. MILES is an afffiliate of the Elderhostel Institute Network.
The "Sages and Seekers" program will be unfolding again at Concord, MA's Concord Academy. This program brings "Sages" over 65 and "Seekers" among the CA student population together for 8 weeks to learn about one another. This excellent video shows the program from several viewpoints.